Wallis86
09-02-2008, 01:16 AM
So I'm getting ready to go see this new doctor at the Cleveland Clinic to figure out about Mitochondrial disease. (I started out with a dx of "under the radar MS" which is why I ended up on these boards, and now I just can't leave!) My question is, how should I prepare for this new doctor besides bringing records? Those of you who know me can help me out with specific things, otherwise what kinds of general things should I do and keep in mind at this appointment?
I've been to TONS of doctors, but I really want to do this one right, asking the right questions etc especially given the rarity and severity of this potential dx. Your help is GREATLY appreciated.
Wallis
I've been to TONS of doctors, but I really want to do this one right, asking the right questions etc especially given the rarity and severity of this potential dx. Your help is GREATLY appreciated.
Wallis
Sponsor
april1848
09-02-2008, 07:57 PM
Good luck, and welcome to Cleveland! I'm glad you ended up on this board, and there probably isn't a mitochondrial one anyway!;) We'll take you!
I'm not sure what kind of advice to give, but you might want to just lay it out on the line, and emphasize to the doctor that nobody has figured it out. He or she may see it as a challenge, like Dr. House! The Clinic is definitely a good place for uncommon or strange diagnoses (no offence, dear!) so I think you're at a good place. I would be perfectly up front with him about the heck you've been through and all around the country seeking a diagnosis. Make them know that you're not a number, and that you need to know.
*If you have time, check out the Art Museum, even though much of it is under construction. It's free, parking is cheap, and totally accessible. It's one of the best, and just a hop away from the Clinic!
I'm not sure what kind of advice to give, but you might want to just lay it out on the line, and emphasize to the doctor that nobody has figured it out. He or she may see it as a challenge, like Dr. House! The Clinic is definitely a good place for uncommon or strange diagnoses (no offence, dear!) so I think you're at a good place. I would be perfectly up front with him about the heck you've been through and all around the country seeking a diagnosis. Make them know that you're not a number, and that you need to know.
*If you have time, check out the Art Museum, even though much of it is under construction. It's free, parking is cheap, and totally accessible. It's one of the best, and just a hop away from the Clinic!
Nenu
09-02-2008, 08:28 PM
Good luck Wallis. I can't wait to hear how this one pans out for you. You've been suffering so much and it's unfair.
I'd be honest with who you see, as April said. Just lay it all out on the table. Stress that you can't go on living like you are now and need answers.
I'd be honest with who you see, as April said. Just lay it all out on the table. Stress that you can't go on living like you are now and need answers.
Bearygood
09-02-2008, 10:20 PM
Hmm. Well, considering your very loooong history of having so many things wrong that COULD be related, maybe some sort of list or even maybe spread sheet with an approximate date/year, what your sx were, doctor(s) you saw and then if there was a dx, what it was and what course of action (medication, etc.) was taken?
What do you think? Might this help or is there more specific input you're looking for?
What do you think? Might this help or is there more specific input you're looking for?
Wallis86
09-02-2008, 11:02 PM
The spreadsheet is a good idea, I should start on that seeing as it will take me until I leave to finish! At some point, I'll lay out for you guys my list of sx to make sure I'm covering everything. I don't want to leave anything out.
April, I'll certainly inform this doc about the hell I've been through for the past decade, and maybe chain myself to him until he figures out what's wrong with me ;) I'll also stop by the Art Museum!
I have two pieces of news, one is a sx, one is a result. The PFT seems to have come back normal, I don't know what that really means as far as what's causing my SOB because it still happens, especially with exertion. I've been having one heck of a time with neuropathy I think. I have really annoying burning in my hands and feet. It was originally on and off, but it's gotten fairly constant. What can I do to make that feel better???
I don't have a migraine per se today, but my eye is killing me, hurting behind my eye and when I move it. Grumble.
I'm going to start that list right now!
April, I'll certainly inform this doc about the hell I've been through for the past decade, and maybe chain myself to him until he figures out what's wrong with me ;) I'll also stop by the Art Museum!
I have two pieces of news, one is a sx, one is a result. The PFT seems to have come back normal, I don't know what that really means as far as what's causing my SOB because it still happens, especially with exertion. I've been having one heck of a time with neuropathy I think. I have really annoying burning in my hands and feet. It was originally on and off, but it's gotten fairly constant. What can I do to make that feel better???
I don't have a migraine per se today, but my eye is killing me, hurting behind my eye and when I move it. Grumble.
I'm going to start that list right now!
Bearygood
09-02-2008, 11:26 PM
I'll also stop by the Art Museum!!
Whaaattt? You're not going to go to the Rock and Roll Hall of Fame? :eek:
Don't know what to say about the burning -- it sounds like something that might be neuropathic and if that's the case, I guess you're talking about some meds.
Have you been taking the magnesium religiously or have you been slacking? If it really doesn't help and you're still hurting, maybe you should call Dr. M.?
Re: the PFT, etc., put those things on the list -- any tests that you know have been administered. It might also be helpful to search your post history to remind you of dates and sx.
Whaaattt? You're not going to go to the Rock and Roll Hall of Fame? :eek:
Don't know what to say about the burning -- it sounds like something that might be neuropathic and if that's the case, I guess you're talking about some meds.
Have you been taking the magnesium religiously or have you been slacking? If it really doesn't help and you're still hurting, maybe you should call Dr. M.?
Re: the PFT, etc., put those things on the list -- any tests that you know have been administered. It might also be helpful to search your post history to remind you of dates and sx.
Wallis86
09-03-2008, 01:37 AM
Good idea regarding the past posts. It's amazing that I now have a pretty detailed record of my medical history right here! And yes, Rock and Roll hall of Fame is on the list too!
I probably will call Dr. Moazami at some point about the migraines.
I probably will call Dr. Moazami at some point about the migraines.
Wallis86
09-03-2008, 02:59 AM
Nenu,
I read your clonazepam post for your BMS and it intrigued me. I you probably saw in one of my posts here, I'm really having an issue with burning in my hands and feet (probably neuropathy, hooray.). Do you think its worthwhile to discuss clonazepam with my doc (probably AFTER my Cleveland Clinic trip) to see if that makes a difference, even if I just take it when the burning is bad? It seems to me that if it help neuropathic mouth pain, it should help neuropathic pain in my extremities, right? I'm not a big fan of anything habit forming and probably wouldn't take it very much anyhow, but this is getting awfully annoying... Let me know your thoughts.
I read your clonazepam post for your BMS and it intrigued me. I you probably saw in one of my posts here, I'm really having an issue with burning in my hands and feet (probably neuropathy, hooray.). Do you think its worthwhile to discuss clonazepam with my doc (probably AFTER my Cleveland Clinic trip) to see if that makes a difference, even if I just take it when the burning is bad? It seems to me that if it help neuropathic mouth pain, it should help neuropathic pain in my extremities, right? I'm not a big fan of anything habit forming and probably wouldn't take it very much anyhow, but this is getting awfully annoying... Let me know your thoughts.
Nenu
09-03-2008, 03:05 AM
It can be VERY habit forming, BUT it's fast acting as well, so it's not a drug you need to take over an extended period of time. Like, say the pain you're having is completely intolerable, you can take a half or full pill, and within the hour you'll feel relief (if it works for your condition that is!).
April has had some VERY good results with it. I really wanted to try it for the burning mouth, because having read so much about BMS, most of those responding say Klonopin (Clonazepam) has been the only drug that has provided them with relief.
Since I failed on anti convulsants, and my GP didn't think Lyrica would help me what so ever, she was surprised when I said, "I'd like to try Rivotril" (the Canadian generic name). She knew I had done my homework!
I took .25mg (half pill) at 6pm and got a lot of relief from the pain. Interestingly enough... NO HEADACHE! No burning face or head pain like before either! It does make me sleepy feeling though, but as you can see, I'm still awake (3am my time) and I took another .25mg at midnight. Again, effect felt very quickly. So I'm quite pleased at the results, and it is helping with my pain for certain.
April should come in here and explain how it's helped her. I'm sure she'll check the thread. I think she detailed in my post a bit about how it's helped her in many ways.
April has had some VERY good results with it. I really wanted to try it for the burning mouth, because having read so much about BMS, most of those responding say Klonopin (Clonazepam) has been the only drug that has provided them with relief.
Since I failed on anti convulsants, and my GP didn't think Lyrica would help me what so ever, she was surprised when I said, "I'd like to try Rivotril" (the Canadian generic name). She knew I had done my homework!
I took .25mg (half pill) at 6pm and got a lot of relief from the pain. Interestingly enough... NO HEADACHE! No burning face or head pain like before either! It does make me sleepy feeling though, but as you can see, I'm still awake (3am my time) and I took another .25mg at midnight. Again, effect felt very quickly. So I'm quite pleased at the results, and it is helping with my pain for certain.
April should come in here and explain how it's helped her. I'm sure she'll check the thread. I think she detailed in my post a bit about how it's helped her in many ways.
Wallis86
09-03-2008, 03:33 AM
Thanks for your input Nenu. Interestingly, I'm on Tegretol (brand name... can't spell generic!) which is an anticonvulsant. If those types of drugs generally work for nerve pain, and this is nerve pain, shouldn't it logically control the pain? I did read Tegretol is one of the drugs used for neuropathy. hmmm... I also really don't want to go on Lyrica. I hear horrible things about it.
Beary, here's my list so far of symptoms since this all got so bad:
burning hands
spasticity
clonus
"seizures"
clenching
short of breath
nausea
hyperreflexia
toe walking
twisting arms
auras
migraines
trunk spasticity
loss of appetite
excessive fatigue
severe hypoglycemia
intermittent highs
tonic spasms?
muscle spasms
I can't decide if I'm missing anything. I also did a whole list of all the tests I can remember getting in the last year or two, along with any results I know (just positive, negative, normal, etc, not actual values.) I tried to estimate start dates for my symptoms too.
Beary, here's my list so far of symptoms since this all got so bad:
burning hands
spasticity
clonus
"seizures"
clenching
short of breath
nausea
hyperreflexia
toe walking
twisting arms
auras
migraines
trunk spasticity
loss of appetite
excessive fatigue
severe hypoglycemia
intermittent highs
tonic spasms?
muscle spasms
I can't decide if I'm missing anything. I also did a whole list of all the tests I can remember getting in the last year or two, along with any results I know (just positive, negative, normal, etc, not actual values.) I tried to estimate start dates for my symptoms too.
Nenu
09-03-2008, 03:46 AM
Tegretol is Carbamazepine if memory serves me correctly.
That's the first anti convulsant I tried, and failed on. In 2 days I had suffered one of the 'very rare' side effects. So rare, it was not in the documentation of the side effects of the drug. I actually had to go searching and found reference to it elsewhere.
Basically, what it did was alter my pitch perception of music. All music I listened to was a pitch off. My neuro said immediately "You must be musically trained". I was at a much younger age actually. :) But I stopped taking it. If it was giving me that side effect, no telling what long term use would result in for me.
That's the first anti convulsant I tried, and failed on. In 2 days I had suffered one of the 'very rare' side effects. So rare, it was not in the documentation of the side effects of the drug. I actually had to go searching and found reference to it elsewhere.
Basically, what it did was alter my pitch perception of music. All music I listened to was a pitch off. My neuro said immediately "You must be musically trained". I was at a much younger age actually. :) But I stopped taking it. If it was giving me that side effect, no telling what long term use would result in for me.
dakota lee
09-03-2008, 12:02 PM
I go to Cleveland Clinic to see Dr. Bruce Cohen for Mitochondrial Disease. My family has a
long history of illness, with two neices being diagnosed with MS. and my sister and I with
mito. At first we had the MS diagnose, then sent to Cleveland where It was confirmed Mito.
There is a ***REMOVED***com.
long history of illness, with two neices being diagnosed with MS. and my sister and I with
mito. At first we had the MS diagnose, then sent to Cleveland where It was confirmed Mito.
There is a ***REMOVED***com.
Wallis86
09-03-2008, 01:39 PM
Hi Dakota,
Nice to hear from you as a fellow adult mito sufferer. I'm seeing Dr. Parikh at Cleveland because Dr. Cohen was booked, but that's fine with me, they are both excellent. It's vry interesting that you were all thought to have MS before dx. Do you know what type of mito you have?
Nice to hear from you as a fellow adult mito sufferer. I'm seeing Dr. Parikh at Cleveland because Dr. Cohen was booked, but that's fine with me, they are both excellent. It's vry interesting that you were all thought to have MS before dx. Do you know what type of mito you have?
Wallis86
09-03-2008, 01:45 PM
Nenu thats the weirdest side effect I've ever heard of! I guess I'll have to speak to my doctor and see what she says about the burning, in fact I just put in a call to her.
I have a terrible new symptom that I've realized has arisen. I'm not eating. I eat dinner and I have juice for my hypoglycemia, so I get the calories from the juice, but I'm NEVER hungry anymore. I try to force myself to eat at meal times, but I'm just not hungry. The only times that I'm hungry are when I'm low, and as soon as I correct the low, I'm not hungry anymore. I'm worried about myself.
I have a terrible new symptom that I've realized has arisen. I'm not eating. I eat dinner and I have juice for my hypoglycemia, so I get the calories from the juice, but I'm NEVER hungry anymore. I try to force myself to eat at meal times, but I'm just not hungry. The only times that I'm hungry are when I'm low, and as soon as I correct the low, I'm not hungry anymore. I'm worried about myself.
Nenu
09-03-2008, 01:51 PM
Yesterday Wallis, I didn't eat much period. Maybe the stress of everything was a contributing factor. Who knows?
What I do is nibble a lot to keep food constant. Thank goodness for having cereal around to eat.
What I do is nibble a lot to keep food constant. Thank goodness for having cereal around to eat.
Wallis86
09-03-2008, 02:09 PM
Well the problem is that I've just realized this has been going on for over a week now. I'm pretty sure I've lost weight. Ive been trying at least to make dinner pretty high calorie and nutritious at least.
dakota lee
09-03-2008, 02:18 PM
Hi Dakota,
Nice to hear from you as a fellow adult mito sufferer. I'm seeing Dr. Parikh at Cleveland because Dr. Cohen was booked, but that's fine with me, they are both excellent. It's vry interesting that you were all thought to have MS before dx. Do you know what type of mito you have?
My sister has a probable MELAS. I have ragged red fibers, still testing for
exact, but that may never be found. My symptoms are
severe fatigue
severe muscle weakness
loss of balance
peripheral neuropathy
dysautonomia (Wrong spelling)
constant leg pain now spreading to arms and back
shooting pains
numbness
air hunger
cardiomyopathy
rapid heart rate
eye problems, ex. troubling focusing, halo around lights at night. blurriness
feet and leg spasms increasing
diabetes
fatty liver
high colesterol good and bad
I think that is it, no wait a minute-cognitive problems. Can't remember
anything.
Nice to hear from you as a fellow adult mito sufferer. I'm seeing Dr. Parikh at Cleveland because Dr. Cohen was booked, but that's fine with me, they are both excellent. It's vry interesting that you were all thought to have MS before dx. Do you know what type of mito you have?
My sister has a probable MELAS. I have ragged red fibers, still testing for
exact, but that may never be found. My symptoms are
severe fatigue
severe muscle weakness
loss of balance
peripheral neuropathy
dysautonomia (Wrong spelling)
constant leg pain now spreading to arms and back
shooting pains
numbness
air hunger
cardiomyopathy
rapid heart rate
eye problems, ex. troubling focusing, halo around lights at night. blurriness
feet and leg spasms increasing
diabetes
fatty liver
high colesterol good and bad
I think that is it, no wait a minute-cognitive problems. Can't remember
anything.
Wallis86
09-03-2008, 06:42 PM
Dakota,
There are an awful lot of similarities between our conditions. My blood sugar has been a serious issue for me. I have mostly terrible hypoglycemia, but I have periods of highs too, which will probably turn into full blown diabetes at some point. Have you progressed slowly or rapidly? For me, it's been progressing weekly. The fatigue is awful, I'm sitting here right now desperately trying to keep my eyes open because I have plans this afternoon. I take daily 2-3 hour naps and force myself to get out of bed afterwards. I also have terrible GERD on top of ulcerative colitis, so my digestion is a mess. Have they tested you for Kearns-Sayre Syndrome? You have a lot of the markers for it: diabetes, eye problems, heart problems. I think I posted my symptoms list here (I don't remember, but I think it was here) a few posts back. It's interesting to compare, especially since there are a lot of similarities. Do you use assistive devices to get around, or are you still ambulatory?
To everyone,
I went to PT this morning and it was hilariously awful. It really made me finalize the decision-- I'm getting a baclofen pump once I have a dx. We were doing mild stretching and my foot turned into a claw foot and then into a complete "hook". My toes had pulled completely down. Then my legs went, then my back, then my arms. My right hand turned clawed next and I couldn't put either of my arms down. It's all spasticity going insanely crazy. I'm not going to accomplish anything right now. I'm making an occupational therapy appointment too to improve my "Activities of Daily Living" also.
There are an awful lot of similarities between our conditions. My blood sugar has been a serious issue for me. I have mostly terrible hypoglycemia, but I have periods of highs too, which will probably turn into full blown diabetes at some point. Have you progressed slowly or rapidly? For me, it's been progressing weekly. The fatigue is awful, I'm sitting here right now desperately trying to keep my eyes open because I have plans this afternoon. I take daily 2-3 hour naps and force myself to get out of bed afterwards. I also have terrible GERD on top of ulcerative colitis, so my digestion is a mess. Have they tested you for Kearns-Sayre Syndrome? You have a lot of the markers for it: diabetes, eye problems, heart problems. I think I posted my symptoms list here (I don't remember, but I think it was here) a few posts back. It's interesting to compare, especially since there are a lot of similarities. Do you use assistive devices to get around, or are you still ambulatory?
To everyone,
I went to PT this morning and it was hilariously awful. It really made me finalize the decision-- I'm getting a baclofen pump once I have a dx. We were doing mild stretching and my foot turned into a claw foot and then into a complete "hook". My toes had pulled completely down. Then my legs went, then my back, then my arms. My right hand turned clawed next and I couldn't put either of my arms down. It's all spasticity going insanely crazy. I'm not going to accomplish anything right now. I'm making an occupational therapy appointment too to improve my "Activities of Daily Living" also.
Wallis86
09-04-2008, 11:54 PM
Good news for once everyone! I was invited to go to training for my service dog in november! So I will have the help I need in only two months! It's really excellent news and I'm really excited about it.
I'm still really having problems getting myself to eat without much progress...
I'm still really having problems getting myself to eat without much progress...
Nenu
09-05-2008, 12:03 AM
Oh cool Wallis!! Can't wait for you to get your new doggie! I'm sure that will be a big help for you. :)
Bearygood
09-05-2008, 11:45 AM
Wallis, that IS great news!! That's going to be fun to hear about and I'm sure it will be helpful to others. (Let us know what your cat thinks too, LOL!)
Sounds like you're making a good chart there. I know you said migraines but I just wanted to mention to make sure you include the pain in your eyes and then say that is was dxed as optical migraines.
As far as the eating, don't rely on juice alone to get your calories. It might be a good idea to invest in some liquid meal replacements to make sure you're getting the nutrients you need. This is important for anyone and with a possible mito dx, it occurs to my medically untrained mind that this might be even more of an issue.
Question -- what happened to the rest of the test results?
Dakota -- just wanted to welcome you. It's nice to see you on the board! I hope you and your sister are doing okay.
Sounds like you're making a good chart there. I know you said migraines but I just wanted to mention to make sure you include the pain in your eyes and then say that is was dxed as optical migraines.
As far as the eating, don't rely on juice alone to get your calories. It might be a good idea to invest in some liquid meal replacements to make sure you're getting the nutrients you need. This is important for anyone and with a possible mito dx, it occurs to my medically untrained mind that this might be even more of an issue.
Question -- what happened to the rest of the test results?
Dakota -- just wanted to welcome you. It's nice to see you on the board! I hope you and your sister are doing okay.
Wallis86
09-05-2008, 03:11 PM
Beary,
Please excuse my exhausted, eye pain riddled mind... I think you are referring to the PFT and the Echo? If you are, I called the doctor AGAIN yesterday and they told me he hasn't read the results yet. I feel like that's the only tests I'm waiting on, right?
I forced myself to eat two high carb meals yesterday, albeit lunch was fairly small. Oddly, the high carb didn't steady my blood sugar like it usually does... hmm. But I was hungry for dinner and cooked myself pasta.
I'm literally counting down the days until I leave for training. I've looked at the database of dogs available (unless they've been career changed between then and now) and decided which dogs I want, based on their names, color/ breed, and parents. It's not like I actually have any say in the matter, but it occupies my 60 days of waiting!
I'm going to make some more doctor phone calls now to update them on anything I've found out.
Please excuse my exhausted, eye pain riddled mind... I think you are referring to the PFT and the Echo? If you are, I called the doctor AGAIN yesterday and they told me he hasn't read the results yet. I feel like that's the only tests I'm waiting on, right?
I forced myself to eat two high carb meals yesterday, albeit lunch was fairly small. Oddly, the high carb didn't steady my blood sugar like it usually does... hmm. But I was hungry for dinner and cooked myself pasta.
I'm literally counting down the days until I leave for training. I've looked at the database of dogs available (unless they've been career changed between then and now) and decided which dogs I want, based on their names, color/ breed, and parents. It's not like I actually have any say in the matter, but it occupies my 60 days of waiting!
I'm going to make some more doctor phone calls now to update them on anything I've found out.
ellekay
09-06-2008, 12:40 AM
Hi Wallis..
What does "under the rader" MS mean and what were/are your symptoms?
Have you had an MRI done, and if so, what did that show?
Im about to get tested for MS as i have all the textbook symptoms and to be honest with you, the diagnoses is not scaring me as much as the "non diagnoses". I dont want to be given the run around.
What does "under the rader" MS mean and what were/are your symptoms?
Have you had an MRI done, and if so, what did that show?
Im about to get tested for MS as i have all the textbook symptoms and to be honest with you, the diagnoses is not scaring me as much as the "non diagnoses". I dont want to be given the run around.
Wallis86
09-06-2008, 02:38 AM
Under the radar MS basically meant that I had the symptoms but didn't have the positive test results... I have a whole slew of symptoms, if you look a few pages back in this thread I have the whole list. I didn't end up having MS after all, if you check out my other posts here. I know what you mean about worrying more about the unknown rather than the possibility of dx. The unknown is far scarier! I wish you luck with your dx.
Wallis
Wallis
Wallis86
09-06-2008, 02:42 AM
Today was a pretty terrible day for me sx-wise. I basically willed myself not to have a true bout of unconsciousness at PT. I was clenched up and twisting in my arms nearly constantly, I had that tell-tale feeling of impending doom that I get before episodes, I kept grasping my clothing with my hands uncontrollably... I felt positively awful. I also had hypoglycemia every 20 min which was really fun.
On the service dog front, I counted the days wrong... Only 57 days left until training!
On the service dog front, I counted the days wrong... Only 57 days left until training!
ellekay
09-06-2008, 02:42 AM
Wallis what do you have then?
Have they diagnosed you with anything yet, and if so, are you satisfied with the result?
Have they diagnosed you with anything yet, and if so, are you satisfied with the result?
Nenu
09-06-2008, 03:17 AM
Wallis what do you have then?
Have they diagnosed you with anything yet, and if so, are you satisfied with the result?
Well, I don't know if Wallis is around, but she'll surely answer your questions when she's back. I've been following her story. MS has been 'ruled out' in her case, and now she's been in limbo waiting for a doctor to figure out what is causing her symptoms. Bless her heart.
We won't let her leave here though, because we're all learning from her, and she's part of our family :)
Have they diagnosed you with anything yet, and if so, are you satisfied with the result?
Well, I don't know if Wallis is around, but she'll surely answer your questions when she's back. I've been following her story. MS has been 'ruled out' in her case, and now she's been in limbo waiting for a doctor to figure out what is causing her symptoms. Bless her heart.
We won't let her leave here though, because we're all learning from her, and she's part of our family :)
ellekay
09-06-2008, 03:53 AM
Oh the poor girl :(
Do you know what she is suffering from? Nothing was found in the MRI?
Do you know what she is suffering from? Nothing was found in the MRI?
Bearygood
09-06-2008, 10:00 AM
Wallis, yes, I was asking about the PFT and Echo.
Elle, whatever Wallis has can't be found on an MRI. Right now they are thinking along the lines of mitochondrial disease. It's very complicated (there are many) and she is preparing to go to Cleveland Clinic to see a specialist.
Elle, whatever Wallis has can't be found on an MRI. Right now they are thinking along the lines of mitochondrial disease. It's very complicated (there are many) and she is preparing to go to Cleveland Clinic to see a specialist.
Wallis86
09-06-2008, 10:31 AM
Thanks for all the kind words guys! I had a dream I was banned from the boards! It was horrible! Darn cat waking me up every morning...
Ellekay please feel free to ask me questions if you have any, I'm the type of person who is always willing to educate.
I've been peaking to a lot of mito adults and there is a disturbing consensus... most of them were dx with MELAS when they had neg. bloodwork. Some of them had neg. muscle biopsy too and were dx based on sx alone. here I was thinking I had ruled that particular one out. I also discovered that the Cleveland Clinic does all their testing on an outpatient basis, even muscle biopsies, I wonder?
Ellekay please feel free to ask me questions if you have any, I'm the type of person who is always willing to educate.
I've been peaking to a lot of mito adults and there is a disturbing consensus... most of them were dx with MELAS when they had neg. bloodwork. Some of them had neg. muscle biopsy too and were dx based on sx alone. here I was thinking I had ruled that particular one out. I also discovered that the Cleveland Clinic does all their testing on an outpatient basis, even muscle biopsies, I wonder?
Bearygood
09-06-2008, 10:37 AM
Unfortunately, there are going to be some things that aren't going to be answered until you get to Cleveland. I bet you sure have one up on others who have gone through the same dx process though -- I bet the doctors will be stunned and impressed by your list of questions! ;)
A while ago, I did stumble onto a Q&A type thing with a mito doctor from CC who mentioned that they send their muscle biopsies out -- if I recall correctly, to a place in Atlanta.
(((Go back to sleep!)))
A while ago, I did stumble onto a Q&A type thing with a mito doctor from CC who mentioned that they send their muscle biopsies out -- if I recall correctly, to a place in Atlanta.
(((Go back to sleep!)))
april1848
09-06-2008, 01:21 PM
Wallis, you poor thing, we aren't letting you leave our cyber family! My memory is telling me that you go to the Clinic on the 16th or 17th and I wish it was sooner! Please get some rest, and hang in there. Hugs!
Nenu
09-06-2008, 05:53 PM
But guess what? He fights for people just like all of us, and he's been doing it HIS way for over 20 years now.
Removed: Discussing the behavior of a named doctor is not permitted. Please review the Posting Rules.
Thank you
Removed: Discussing the behavior of a named doctor is not permitted. Please review the Posting Rules.
Thank you
Wallis86
09-06-2008, 06:13 PM
Yes, I know I shouldn't let one person's point of view tarnish my opinion, I am just nervous because I so desperately want the answers I've been seeking for so long. I'm not sure if Dr. D will call Parikh or email him, or whether she sent a note with my records. She's been horrible at returning my calls recently, but I'll call her monday and ask her to speak to him somehow.
Today is another horrible day, ugh. My blood sugars for the day: 73,73,76,73,56,54,67... I mean seriously? I feel just horrible from being low so much. I'm getting back into a bad period with my blood sugar after a somewhat manageable period this past month. I also attempted to walk farther than usual, probably about 200 yards or so (maybe a bit more). While it used to be hard for me to do because it hurt, made me stiff, and made me tired, I've reached a new level of problems now. After about 100 yards, my left leg did its "thing", my toes curled up and my leg contracted until it was bent at the knee about 6" away from the ground. So now its not just hard to walk, its impossible. My hands are burning like I've dunked them in hydrochloric acid too. I've decided I should just sleep all day every day so that time seems to pass quicker ;)
Today is another horrible day, ugh. My blood sugars for the day: 73,73,76,73,56,54,67... I mean seriously? I feel just horrible from being low so much. I'm getting back into a bad period with my blood sugar after a somewhat manageable period this past month. I also attempted to walk farther than usual, probably about 200 yards or so (maybe a bit more). While it used to be hard for me to do because it hurt, made me stiff, and made me tired, I've reached a new level of problems now. After about 100 yards, my left leg did its "thing", my toes curled up and my leg contracted until it was bent at the knee about 6" away from the ground. So now its not just hard to walk, its impossible. My hands are burning like I've dunked them in hydrochloric acid too. I've decided I should just sleep all day every day so that time seems to pass quicker ;)
ellekay
09-06-2008, 11:39 PM
With the risk of sounding somewhat stupid and uneducated ( which im not ) :) can someone tell me what Mito is?
Wallis86
09-07-2008, 12:00 AM
No problem elle,
Mito is the short form of mitochondrial disease, as I'm sure you gathered. There are many many diseases under the heading of mitochondrial disease, but many people who have mito don't know which kind they have. There are a few defined diseases such as MELAS (mitchondrial encephalopathy lactic acidosis and stroke-like episodes), MERRF (myoclonic epilepsy with ragged red fibers), MNGIE (mitochondrial neurogastrointestinal encephalopathy), Leigh's diseases, to name a few.
Basically, the mitochondria are tiny organelles (part of your cells) present in every cell in the body. They are the cell's powerhouses and are responsible for providing your cells with energy. Mitochondrial disease is basically a mutation of the mitochondria. The more energy-hungry organs are generally more affected, i.e. have more mutated mitochondria. Those include the brain, nerves, pancreas, heart, liver, GI tract, and lungs. As the cells replicate, more and more of them become mutated, causing more failure of the organs involved.
While it is INCREDIBLY variable from person to person, mito symptoms can include (but as I say some people have the symptoms some don't):
Seizures, GI dysmotility, neuropathy, eye problems, loss of hearing, diabetes, heart failure, liver failure, air hunger (feeling like you aren't getting enough air), Lactic acidosis (build up of acids in the blood), severe hypoglycemia, dementia, muscle problems (spasticity, hypotonia, spasms, muscle wasting), mental retardation, and SEVERE fatigue.
Mito is rare, and very hard to diagnose. I've been having symptoms for 11 years now and the possibility of mito has only just been brought up 2 months ago. It can present similarly to MS in adults, although most mito sufferers are children, either because it could be more common in children or because affected children don't survive to adulthood.
Treatment is not well developed. The standard of care, although the effects are variable, include supplements of CoQ10, L-carnitine, and a host of other supplements that help bypass some of the steps the mitochondria need to do to produce energy. Other treatments take care of the secondary complications such as insulin for diabetes, hearing aides, pace makers, medications to control seizures and muscle problems, and G-tubes for liquid nutrition.
Diagnosis is generally through muscle biopsy, blood tests, skin biopsy, and examination. Many people with mito go through all the diagnostic tests coming up negative but still having the disease. This is because not all cells are affected by mutated mitochondria so its possible to get a false negative result.
Generally, the rule for mito is: If you have diseases involving more than three organ systems with atypical presentation, think mito. That doesn't mean everyone who fits those two characteristics has mito, obviously, but since testing is very expensive, those criteria help establish who should be tested.
Hope that was informative. Please ask any questions you may still have!
Wallis
Mito is the short form of mitochondrial disease, as I'm sure you gathered. There are many many diseases under the heading of mitochondrial disease, but many people who have mito don't know which kind they have. There are a few defined diseases such as MELAS (mitchondrial encephalopathy lactic acidosis and stroke-like episodes), MERRF (myoclonic epilepsy with ragged red fibers), MNGIE (mitochondrial neurogastrointestinal encephalopathy), Leigh's diseases, to name a few.
Basically, the mitochondria are tiny organelles (part of your cells) present in every cell in the body. They are the cell's powerhouses and are responsible for providing your cells with energy. Mitochondrial disease is basically a mutation of the mitochondria. The more energy-hungry organs are generally more affected, i.e. have more mutated mitochondria. Those include the brain, nerves, pancreas, heart, liver, GI tract, and lungs. As the cells replicate, more and more of them become mutated, causing more failure of the organs involved.
While it is INCREDIBLY variable from person to person, mito symptoms can include (but as I say some people have the symptoms some don't):
Seizures, GI dysmotility, neuropathy, eye problems, loss of hearing, diabetes, heart failure, liver failure, air hunger (feeling like you aren't getting enough air), Lactic acidosis (build up of acids in the blood), severe hypoglycemia, dementia, muscle problems (spasticity, hypotonia, spasms, muscle wasting), mental retardation, and SEVERE fatigue.
Mito is rare, and very hard to diagnose. I've been having symptoms for 11 years now and the possibility of mito has only just been brought up 2 months ago. It can present similarly to MS in adults, although most mito sufferers are children, either because it could be more common in children or because affected children don't survive to adulthood.
Treatment is not well developed. The standard of care, although the effects are variable, include supplements of CoQ10, L-carnitine, and a host of other supplements that help bypass some of the steps the mitochondria need to do to produce energy. Other treatments take care of the secondary complications such as insulin for diabetes, hearing aides, pace makers, medications to control seizures and muscle problems, and G-tubes for liquid nutrition.
Diagnosis is generally through muscle biopsy, blood tests, skin biopsy, and examination. Many people with mito go through all the diagnostic tests coming up negative but still having the disease. This is because not all cells are affected by mutated mitochondria so its possible to get a false negative result.
Generally, the rule for mito is: If you have diseases involving more than three organ systems with atypical presentation, think mito. That doesn't mean everyone who fits those two characteristics has mito, obviously, but since testing is very expensive, those criteria help establish who should be tested.
Hope that was informative. Please ask any questions you may still have!
Wallis
ellekay
09-07-2008, 12:20 AM
Wallis thank you so much for that. I was reading all your posts trying to join the dots but i just grew more confused :) I should just ask next time!
So is that what you have undoubtably? Sounds a lot worse than MS but i could be wrong, although some of the symptoms are very much like MS, they also sound very different.
From what some of ladies have posted on here, i seem to have the more "lighter" symptoms than others, but having said that, a few month ago i didnt have half the symptoms i have now. So i am a little concerned that whatever it is i have, is progressing beyond my control.
I know there is something not quite right with my body, and have felt this way for a while. The numbess in my fingers, toes, muscles twitches all over my body, distorted vision in my right eye, the fullness, popping feeling in my left ear, the occasional dizzy spell, the constant and ever so frequest UTI, the faint spells, thyroid disfunction, EXTREME fatigue and tiredness, confusion and a fogged up head feeling, depression. ETC..
With all these symptoms that im dealing with, some all at once, do you think its MS?
Elle
So is that what you have undoubtably? Sounds a lot worse than MS but i could be wrong, although some of the symptoms are very much like MS, they also sound very different.
From what some of ladies have posted on here, i seem to have the more "lighter" symptoms than others, but having said that, a few month ago i didnt have half the symptoms i have now. So i am a little concerned that whatever it is i have, is progressing beyond my control.
I know there is something not quite right with my body, and have felt this way for a while. The numbess in my fingers, toes, muscles twitches all over my body, distorted vision in my right eye, the fullness, popping feeling in my left ear, the occasional dizzy spell, the constant and ever so frequest UTI, the faint spells, thyroid disfunction, EXTREME fatigue and tiredness, confusion and a fogged up head feeling, depression. ETC..
With all these symptoms that im dealing with, some all at once, do you think its MS?
Elle
Wallis86
09-07-2008, 03:15 AM
It's very hard to say if you have MS or not. MS, like so many others, is such an elusive disease. Even if you HAVE MS people tell you it might not be MS! It's hard to have a disease where all the symptoms can be caused by other benign things like stress or lack of sleep. My best advice to you is to get all the testing done and see if that clarifies anything for you. There's the possibility that, like me, all the MS tests will be normal. Then you just think of it as one less thing to worry about having, right? I know how scary it is to progress at a rapid rate. I didn't have many of my symptoms 3 months ago and literally every week something changes or gets worse. It's terrifying. Just do your best, as hard as it is, not to let illness control you. Get out and try to enjoy the things you used to. I wish I had taken that advice more myself because many of the things I used to love to do I can't do at all anymore. Please keep us updated on your dx progress.
Wallis
To all,
This day hasn't been a good one at all, really. Just not feeling well. I ate more today than I had, but everything I put in my mouth immediately made me feel like I was going to vomit. I'm having some serious GI issues now. I'm hurting quite a bit from all this increase in my spasticity. Any suggestions? I'm pretty annoyed that I've hit the inevitable low part of my blood sugar cycle again. I'm getting pretty worried because I'm going low earlier and earlier in the day, like 5am, which never happened before. Just further progression of the problem. I'm deathly afraid of stopping my 5mg of prednisone because I am positive it's the only thing that keeps my numbers up during the night. I'm scared that I could die in my sleep if I stop it. I'm getting scared as it is right now. If only they had invented a glucose pump... too bad it's impossible. Hope everyone is well.
Wallis
To all,
This day hasn't been a good one at all, really. Just not feeling well. I ate more today than I had, but everything I put in my mouth immediately made me feel like I was going to vomit. I'm having some serious GI issues now. I'm hurting quite a bit from all this increase in my spasticity. Any suggestions? I'm pretty annoyed that I've hit the inevitable low part of my blood sugar cycle again. I'm getting pretty worried because I'm going low earlier and earlier in the day, like 5am, which never happened before. Just further progression of the problem. I'm deathly afraid of stopping my 5mg of prednisone because I am positive it's the only thing that keeps my numbers up during the night. I'm scared that I could die in my sleep if I stop it. I'm getting scared as it is right now. If only they had invented a glucose pump... too bad it's impossible. Hope everyone is well.
ellekay
09-07-2008, 03:29 AM
Wallis thank you for your advice. I will surely keep you updated of my dx.
Should you not be in a hospital right now????
Should you not be in a hospital right now????
Wallis86
09-07-2008, 08:55 AM
Nah, no hospitals for me! I've lasted this long...
Beary, you're probably saying "why are you awake at 451am!" to yourself, and I'll start out by promising I'll go back to sleep. I woke up with darn spasms... they weren't my real convulsions, I just woke up with everything moving and jerking around. It makes me feel like a bug or something! As if I hadn't been tired enough, here I am up even earlier than usual. My cat DID come lie with me to help calm the convulsion though instead of just being a pain in the butt! I guess shes useful sometimes. And for the record, blood sugar is 92, so I'm good for the time being.
Beary, you're probably saying "why are you awake at 451am!" to yourself, and I'll start out by promising I'll go back to sleep. I woke up with darn spasms... they weren't my real convulsions, I just woke up with everything moving and jerking around. It makes me feel like a bug or something! As if I hadn't been tired enough, here I am up even earlier than usual. My cat DID come lie with me to help calm the convulsion though instead of just being a pain in the butt! I guess shes useful sometimes. And for the record, blood sugar is 92, so I'm good for the time being.
ellekay
09-07-2008, 09:07 AM
Well whenever your awake and cant sleep, your aussie mate will most likely be online so drop me a line whenever, and that goes to everyone else here also. Its only 10pm here in Sydney, and im chucking a sickie tomorrow and not going to work. Thats whats been annoying with all this, im becoming to tired to work. Is this something to look forward to? Am i going to end up in a nursing home by the time im 30?
Ahhhhh im hating life right now :(
Ahhhhh im hating life right now :(
Bearygood
09-07-2008, 11:45 AM
Ah, Wallis. Hang in there -- Cleveland is not so far away!! What are all the medications you're on? I think I may have missed something about the predisone. :dizzy:
Wallis86
09-07-2008, 02:35 PM
Yeah the prednisone is sort of one of those things the doctor has been trying to get me off of for a year now. I didn't want to start it in the first place, but I had a flare of my "arthritis" or whatever and my rheum. made me take it, so here I am 2 years later. No one is supposed to be on pred for two years. Besides that, baclofen, tegretol, cymbalta, colazal, and folic acid. A surprisingly short list for me.
I had a dream about being tested for seizures again. It was beyond strange. It involved testing urine to determine the cause of the seizures.
I had a dream about being tested for seizures again. It was beyond strange. It involved testing urine to determine the cause of the seizures.
Bearygood
09-08-2008, 12:09 AM
Well, perhaps it means that one day you'll be inventing new testing procedures and become rich and famous. It'll be called the "Wallis Criteria". ;)
Not that long a list of meds but a heavy duty one (except for the folic acid). And why are you on that and how long has it been?
Not that long a list of meds but a heavy duty one (except for the folic acid). And why are you on that and how long has it been?
Wallis86
09-08-2008, 12:26 AM
I was put on the folic acid when I was taking methotrexate. it's a chemo drug that I HATED taking. I stopped the MTX in March but was told to continue the folic acid because it was good for me or something. I'm a little patchy about taking it now though. Everything but the tegretol has been long term. Colazal has been like 3 years, pred is 2 years, cymbalta is about 2 years. I used to be on a lot more, so I'm glad the list has dropped down at least temporarily.
Wallis86
09-08-2008, 07:03 PM
Well, it's official. 1) Dr. D is not calling me back again. 2) I've hit a REALLY bad period in my blood sugar. I woke up at 65 this morning and after lunch (about 20 minutes) I was 47. I haven't been in 40s in a while. It makes me feel horrendous. My internet is completely dead too :(
Update: I got back the results of my pulmonary function test and echo. Both were normal. The doctor says that is good and bad because it probably means my diaphragm or lung muscles (do lung muscles exist?) aren't working so well. And the internet is kind of fixed!
Update: I got back the results of my pulmonary function test and echo. Both were normal. The doctor says that is good and bad because it probably means my diaphragm or lung muscles (do lung muscles exist?) aren't working so well. And the internet is kind of fixed!
ellekay
09-09-2008, 07:35 AM
Keep your chin up wallis, it'll all be okay.
However i am beginning to feel sorry for myself. Today was a shocker of a day. I think my boss is at witts end with me :(
However i am beginning to feel sorry for myself. Today was a shocker of a day. I think my boss is at witts end with me :(
Bearygood
09-09-2008, 09:46 AM
The newest test results are obviously not ideal but they're definitely more good than bad!
Re: Dr. D., call again today. If you only left a message saying that you called the other times, I'd suggest you leave a more detailed message with someone who will understand (like an Adele type person). You'd think she'd want to know these test results, anyway.
Re: the folic acid, don't discount it. My doctor had me taking it for a while years ago t bring down high hymocysteine levels. If they told you to continue taking it, it might be for heart protective reasons.
I had suggested meal replacements for you. Maybe they might also be good as a supplement, even if you're eating? How can you get this steadier and not fluctuate so much and so rapidly?
Cleveland is closer today than it was yesterday. ;)
Re: Dr. D., call again today. If you only left a message saying that you called the other times, I'd suggest you leave a more detailed message with someone who will understand (like an Adele type person). You'd think she'd want to know these test results, anyway.
Re: the folic acid, don't discount it. My doctor had me taking it for a while years ago t bring down high hymocysteine levels. If they told you to continue taking it, it might be for heart protective reasons.
I had suggested meal replacements for you. Maybe they might also be good as a supplement, even if you're eating? How can you get this steadier and not fluctuate so much and so rapidly?
Cleveland is closer today than it was yesterday. ;)
Wallis86
09-09-2008, 05:14 PM
Dr. D called me back today. I told her about the neuropathy, the blood sugar, the anorexia. She wants me to get in to see her colleague out here, which I've been trying to do. This doctor would just be a neurologist to follow my case out here and be in charge of tests and whatnot.
I don't discredit the folic acid at all, it worked and works wonders for me on my mouth sores from the UC and when I was on the MTX. I'm just not good at remembering it in my bunch of pills.
I tried Glucerna shakes a while back to help control my blood sugar but they were foul. I'll keep looking into some alternatives. Maybe I can start adding cornstarch to some of my meals. For some reason I have an aversion to corn starch, who knows why, I just dislike it.
53 days left until dog day! Did I mention there will be a dog at training named Cecil? He's adorable and I want him. :)
I don't discredit the folic acid at all, it worked and works wonders for me on my mouth sores from the UC and when I was on the MTX. I'm just not good at remembering it in my bunch of pills.
I tried Glucerna shakes a while back to help control my blood sugar but they were foul. I'll keep looking into some alternatives. Maybe I can start adding cornstarch to some of my meals. For some reason I have an aversion to corn starch, who knows why, I just dislike it.
53 days left until dog day! Did I mention there will be a dog at training named Cecil? He's adorable and I want him. :)
Nenu
09-09-2008, 05:22 PM
53 days left until dog day! Did I mention there will be a dog at training named Cecil? He's adorable and I want him. :)
What color is he Wallis? Cecil's an awesome name for a dog! :)
What color is he Wallis? Cecil's an awesome name for a dog! :)
april1848
09-09-2008, 08:16 PM
It's a beautiful, cool, sunny day in Cleveland today, Wallis, When you get here, try to enjoy the weather instead of the inevitable city-wide depression that will come after the Browns vs Steelers game.
I'm SO glad you're closer to getting a dog! I can't wait to hear about it. I love the name Cecil too; it reminds me of Queen Elizabeth I's Cecil, her wisest advisor. A cool, collected, intelligent guy, more so the father than the son. I'm digressing into history, sorry!
Apparently there is some benefit to cornstarch I don't know about. Is it sugar? If you need more in your diet, use it as a thickening agent. Mix it very well with any cold liquid, add it to any boiling liquid, and whisk until it thickens. I make lots of sauces this way, although in my family it's considered culinary fraud.
Speaking of food, the Cleveland Clinic is awfully close to Little Italy, where my little sister lives. If you like Italian food and baked goods, you know who to ask! I've eaten at them all several times.
You are in my thoughts Wallis!
I'm SO glad you're closer to getting a dog! I can't wait to hear about it. I love the name Cecil too; it reminds me of Queen Elizabeth I's Cecil, her wisest advisor. A cool, collected, intelligent guy, more so the father than the son. I'm digressing into history, sorry!
Apparently there is some benefit to cornstarch I don't know about. Is it sugar? If you need more in your diet, use it as a thickening agent. Mix it very well with any cold liquid, add it to any boiling liquid, and whisk until it thickens. I make lots of sauces this way, although in my family it's considered culinary fraud.
Speaking of food, the Cleveland Clinic is awfully close to Little Italy, where my little sister lives. If you like Italian food and baked goods, you know who to ask! I've eaten at them all several times.
You are in my thoughts Wallis!
Wallis86
09-10-2008, 01:14 AM
April, cornstarch is used for people with glycogen storage problems (can't stor glucose in their liver, so they re low constantly). Raw cornstarch is a very slow acting carb so ideally it should stabilize your blood sugar.
There is going to be a meeting near me for some of the older mito people in the area and they are trying to find a way to get me there if I'm back from cleveland in time.
There is going to be a meeting near me for some of the older mito people in the area and they are trying to find a way to get me there if I'm back from cleveland in time.
Wallis86
09-12-2008, 12:56 AM
I'm having a really hard time with my arms today. I have a hard time describing what happens to them... they repeatedly contract and twist around. I look like I'm showing off my muscles except my hands are unclenched but twisted and stuck in one position, and my arms are not facing my head . It stays that way for about 5-10 seconds and then some of the muscles will relax. Usually my hands are the last to relax from their weird position. Does this sound like spasticity? Dystonia? Something else? It's really annoying me.
At least there's only 11 days until the Cleveland Clinic.:rolleyes:
At least there's only 11 days until the Cleveland Clinic.:rolleyes:
Bearygood
09-21-2008, 12:01 PM
Wallis, I can't remember the exact day but I think you're leaving today or tomorrow? I wish you the very best of luck and hope you come back with some answers or at least get closer to them! Please keep us posted. :angel:
Nenu
09-21-2008, 12:15 PM
Beary I missed you in your absence! Welcome back! :)
Wallis, do give us an update sweetie! :)
Wallis, do give us an update sweetie! :)
april1848
09-21-2008, 09:47 PM
Ditto to Nenu!! Please let us know how it all goes!