Wallis86
12-07-2008, 04:37 PM
Hi all,
I've missed updating you all. I don't remember where I left off a while ago, so forgive me if I repeat anything.
Basically, I've had to move home to NY until January. I started taking Sinemet (levodopa) to treat my "dopa-responsive dystonia", as they thought it was. The Sinemet made my dystonia so bad that I couldn't care for myself. I got off the Sinemet and improved. However, after an appointment with a new movement disorder specialist who told me to stop the Sinemet, my feet curled up and have stayed that way ever since. I haven't walked in over 2 months now. Then about 3 weeks into that, I woke up one morning with my head stuck to the left and my left shoulder stuck up by my ear. That stayed permanently too. Basically, the dystonia spread to involve my back, which makes me twist and lean over sharply to the left, and my shoulder, neck, legs, and arms (intermittently still). It got much too hard to live alone, unable to do laundry or cook for myself, or even bathe myself some times.
So my dad flew out to bring me and my cat home. I have an appointment friday with Dr. Greene, a movement specialist at Columbia, and an appointment next monday with Dr. Hirano, on of the top mitochondrial disorder specialists, also at Columbia. We're still working on the mitochondrial problem, if it exists.
Basically I have a few possible problems... 1. primary generalized dystonia (DYT1 negative) 2. Secondary generalized dystonia, secondary to mitochondrial myopathy 3. Secondary tardive dystonia, caused by medications I took for years, which is permanent 4. I might have dystonia caused by neurotransmitter deficiencies, but not fixable by dopamine supplementation.
I'm having a rough time at home since the house is not at all accessible. So I'm carried everywhere, which I hate. I'll keep everyone updated :)
I've missed updating you all. I don't remember where I left off a while ago, so forgive me if I repeat anything.
Basically, I've had to move home to NY until January. I started taking Sinemet (levodopa) to treat my "dopa-responsive dystonia", as they thought it was. The Sinemet made my dystonia so bad that I couldn't care for myself. I got off the Sinemet and improved. However, after an appointment with a new movement disorder specialist who told me to stop the Sinemet, my feet curled up and have stayed that way ever since. I haven't walked in over 2 months now. Then about 3 weeks into that, I woke up one morning with my head stuck to the left and my left shoulder stuck up by my ear. That stayed permanently too. Basically, the dystonia spread to involve my back, which makes me twist and lean over sharply to the left, and my shoulder, neck, legs, and arms (intermittently still). It got much too hard to live alone, unable to do laundry or cook for myself, or even bathe myself some times.
So my dad flew out to bring me and my cat home. I have an appointment friday with Dr. Greene, a movement specialist at Columbia, and an appointment next monday with Dr. Hirano, on of the top mitochondrial disorder specialists, also at Columbia. We're still working on the mitochondrial problem, if it exists.
Basically I have a few possible problems... 1. primary generalized dystonia (DYT1 negative) 2. Secondary generalized dystonia, secondary to mitochondrial myopathy 3. Secondary tardive dystonia, caused by medications I took for years, which is permanent 4. I might have dystonia caused by neurotransmitter deficiencies, but not fixable by dopamine supplementation.
I'm having a rough time at home since the house is not at all accessible. So I'm carried everywhere, which I hate. I'll keep everyone updated :)
Sponsor
MSJayhawk
12-07-2008, 04:48 PM
It is good to hear you getting on the forums. I am sorry that you have progressed to your current state. My mom takes Sinemet for her Parkinson's. I know for her it makes her sleepy as well as causes hallucinations.
Due to my latest battle my left leg is pretty useless for mobility. As a result my doctor has asked me to get a passive exerciser to keep my range of motion and assist with my muscle strength and tone. I have tried looking for a Theracycle, but it is too expensive. I have just purchased an Exercycle. The Exercycle has been around since the 1930s and is the predecessor to the Theracycle. Would this help you too?
I will mention your leaning to the left to my mom. Her leftward direction is mostly from her subderal hematoma from her accident. She veers left even in her powerchair.
I will keep you in my prayers. You are blessed to have a father and family who care for you- the best medicine. Check with your local state rehabilitation agency for assistance with making your parent's home accessible.
I hope you are able to soon regain some independence. Many blessings to you.
Due to my latest battle my left leg is pretty useless for mobility. As a result my doctor has asked me to get a passive exerciser to keep my range of motion and assist with my muscle strength and tone. I have tried looking for a Theracycle, but it is too expensive. I have just purchased an Exercycle. The Exercycle has been around since the 1930s and is the predecessor to the Theracycle. Would this help you too?
I will mention your leaning to the left to my mom. Her leftward direction is mostly from her subderal hematoma from her accident. She veers left even in her powerchair.
I will keep you in my prayers. You are blessed to have a father and family who care for you- the best medicine. Check with your local state rehabilitation agency for assistance with making your parent's home accessible.
I hope you are able to soon regain some independence. Many blessings to you.
Wallis86
12-08-2008, 12:30 AM
Jayhawk,
I've considered using a passive ROM machine, but I'm not sure what will work for me right now. I was doing passive ROM 4x a week originally at PT, but it tends to make my dystonia significantly worse, so I'll have to talk to the doctor about what I should be doing. I think my biggest issue right now is that when my dystonia acts up, my left arm feels like it's half dead... I don't know if maybe I'm trapping a nerve from my shoulder being stuck up or something, but it feels like my muscles don't work. It's not a tingling or anything or a numbness... just a dead/weakness.
I know Sinemet works fairly well for Parkinson's if you can tolerate the side effects... I'm never going back on it though... It made me have serious bouts of akathesia, where I literally couldn't stop moving because I had this deep crawling sensation throughout my body MAKING me move. It was truly torture to be unable to stop it and it brought me to tears and eventually the ER once it switched from akathesia to dystonic spasms/chorea as a dystonic storm.
But I at least know I'm doing everything I can for myself right now. Jayhawk, we'll have to talk service dogs in a couple months too ;)
Wallis
I've considered using a passive ROM machine, but I'm not sure what will work for me right now. I was doing passive ROM 4x a week originally at PT, but it tends to make my dystonia significantly worse, so I'll have to talk to the doctor about what I should be doing. I think my biggest issue right now is that when my dystonia acts up, my left arm feels like it's half dead... I don't know if maybe I'm trapping a nerve from my shoulder being stuck up or something, but it feels like my muscles don't work. It's not a tingling or anything or a numbness... just a dead/weakness.
I know Sinemet works fairly well for Parkinson's if you can tolerate the side effects... I'm never going back on it though... It made me have serious bouts of akathesia, where I literally couldn't stop moving because I had this deep crawling sensation throughout my body MAKING me move. It was truly torture to be unable to stop it and it brought me to tears and eventually the ER once it switched from akathesia to dystonic spasms/chorea as a dystonic storm.
But I at least know I'm doing everything I can for myself right now. Jayhawk, we'll have to talk service dogs in a couple months too ;)
Wallis
MSJayhawk
12-08-2008, 01:50 AM
I know what your arm feels like. Have you tried a masseuse? A masseuse might be able to assist you with some of the muscles. I do not know how well I will do on the passive machine. I hope to take delivery within the next two weeks. My doctor wants to see how I do. I am going to give it a go. If a passive ROM worsens your condition, then I would back off.
I am glad you are off the Sinemet. I know my mom would rather be off the Sinemet.
LOL, I look forward to shop talk on service dogs :angel:
I am glad you are off the Sinemet. I know my mom would rather be off the Sinemet.
LOL, I look forward to shop talk on service dogs :angel:
Wallis86
12-08-2008, 07:15 AM
I haven't tried a masseuse, although I did get my sister to massage my shoulders and upper back yesterday. What I've found is that it feels goodish, like a massage does, a little painful, but it doesn't do anything to help my dystonia. It's like the muscles are so permanently seized up that nothing makes a difference.
I feel like I NEED to do something to preserve my muscles, I know the dangers of not walking for so long, and how hard it will be to ever gain that strength back. I was also told by my OT that my arms are nearly shot too. She has told me I really should only be using a power chair, even if I can use my crutches again, because I need to save my arms. If I don't have working arms, I'm in trouble as far as independence goes... no transfers, no manual chairs, no crutches. I hate using the power chair though... It's so inconvenient and I can't take it anywhere. I don't have a van :/
I feel like I NEED to do something to preserve my muscles, I know the dangers of not walking for so long, and how hard it will be to ever gain that strength back. I was also told by my OT that my arms are nearly shot too. She has told me I really should only be using a power chair, even if I can use my crutches again, because I need to save my arms. If I don't have working arms, I'm in trouble as far as independence goes... no transfers, no manual chairs, no crutches. I hate using the power chair though... It's so inconvenient and I can't take it anywhere. I don't have a van :/
MSJayhawk
12-08-2008, 11:28 AM
There is the MOTOMED from Germany. Your OT may have even used it. I looked at that for my passive exercise. It can be used from a powerchair. Even if you are in a powerchair, it does not mean a loss of independence. My next vehicle, when the time comes, will be a roll-in driver's side that allows me to drive from my powerchair. For now, I limit myself to the powerchair for about 90% of the time indoors. This allows me to preserve my "get up and go" power.
For now, your goal should be rest and recovery. I was on bed rest for nearly 6 months and it was terrible! BUT my body needed the time to recover. I spent the time reading, praying, teaching, etc.
No matter what point you are at, find a small thing you can do and relish that small thing as your independence. Each day strive to acheive a little more, but do not beat up on yourself when the day forward is more of a day backing-up. No pity parties!!
Many years ago when I was first knocked back by MS, I learned to crochet. I crocheted an entire twin-size blanket. It was good therapy for my hands and my cognitive ability. In 2002 the rehabilitation nurse visited my home and told me to play with Lego Blocks. This news was good for my little boy. Since I had to rehab daily, together we built castles and forts out of Legos.
When you can do something like Legos, time passes easily and at the end of the day you can see your progress! Though it may seem like small steps, when you are really hurting, the small bridge made of Legos can seem like a major bridge construction.
When my muscles were seized up, the doctor had me in rehab for 3 weeks with a licensed masseuse. They used electrical stimulation and massage to loosen my muscles. I remember the sessions fondly because the relief was so good I would fall asleep during the 2-3 hour sessions.
For now, your goal should be rest and recovery. I was on bed rest for nearly 6 months and it was terrible! BUT my body needed the time to recover. I spent the time reading, praying, teaching, etc.
No matter what point you are at, find a small thing you can do and relish that small thing as your independence. Each day strive to acheive a little more, but do not beat up on yourself when the day forward is more of a day backing-up. No pity parties!!
Many years ago when I was first knocked back by MS, I learned to crochet. I crocheted an entire twin-size blanket. It was good therapy for my hands and my cognitive ability. In 2002 the rehabilitation nurse visited my home and told me to play with Lego Blocks. This news was good for my little boy. Since I had to rehab daily, together we built castles and forts out of Legos.
When you can do something like Legos, time passes easily and at the end of the day you can see your progress! Though it may seem like small steps, when you are really hurting, the small bridge made of Legos can seem like a major bridge construction.
When my muscles were seized up, the doctor had me in rehab for 3 weeks with a licensed masseuse. They used electrical stimulation and massage to loosen my muscles. I remember the sessions fondly because the relief was so good I would fall asleep during the 2-3 hour sessions.
Wallis86
12-08-2008, 01:29 PM
I'd love to get a van like that. I don't know that I'm ever going to be safe to drive again though. The problem is that I randomly have dystonic storms or increased symptoms that prevent me from using my arms as well as my legs. I feel like if that happened to me on a freeway I would be roadkill. I don't even know if I'd be able to drive if I cold walk a little again. At some point I'll have to get a van anyhow so I can go out in my powerchair. When I'm home, I'm not usually in my chair, I'm usually in my bed. Those are my options for now.
So far I've done light massage and ultrasound on my dystonia with no benefit. The good news about dystonia is that it lessens or remits during sleep, although once you get contractures, you obviously aren't going to loosen up during sleep.
I've been spending my time knitting, reading, watching TV, using the computer... And I try and get to the service dog org I volunteer with as much as possible, which is my favorite way to spend my time. I like to knit and play video games, but can only do so for short periods because then my hands seize up. I haven't noticed a huge problem with hand dystonia from the computer though, I guess I don't move as much.
Thanks so much for all the advice, it helps :)
So far I've done light massage and ultrasound on my dystonia with no benefit. The good news about dystonia is that it lessens or remits during sleep, although once you get contractures, you obviously aren't going to loosen up during sleep.
I've been spending my time knitting, reading, watching TV, using the computer... And I try and get to the service dog org I volunteer with as much as possible, which is my favorite way to spend my time. I like to knit and play video games, but can only do so for short periods because then my hands seize up. I haven't noticed a huge problem with hand dystonia from the computer though, I guess I don't move as much.
Thanks so much for all the advice, it helps :)
april1848
12-08-2008, 07:09 PM
Hey Wallis--thanks for the update, I've been wondering how you're doing. I have no advice and I know nothing about your illness. I just wanted to tell you that you are in my prayers, and I'm sorry you can't get around. Good for you for staying as active as possible, and thank goodness you have a great family. Jayhawk's right that family is the best medicine of all.
Please continue to update us and remember you're in my thoughts. I hope you find some relief!
Please continue to update us and remember you're in my thoughts. I hope you find some relief!
Bearygood
12-08-2008, 07:50 PM
Wallis, I posted to you on another board here as well. I haven't been around much at all but I've been thinking about you and was concerned! I'm glad to see an update here as well. So I'm a little confused -- is now THE definitive dx? Did CC turn out to be helpful or a little wacky?
I'm sorry to hear about the inaccessibility of your father's house -- I can only imagine how much of a drag that is! I hope that there's some good news coming 'round the corner for you -- somehow, somewhere! You deserve it!!
I'm sorry to hear about the inaccessibility of your father's house -- I can only imagine how much of a drag that is! I hope that there's some good news coming 'round the corner for you -- somehow, somewhere! You deserve it!!
Wallis86
12-08-2008, 11:29 PM
Beary,
I still don't have a definitive diagnosis... unless you ask to jerk docs at CC. CC thinks I have dopa-responsive dystonia, ignoring completely the fact that I am not responsive to dopamine... or rather, I am REVERSELY responsive to dopamine. I even have adverse reactions to caffeine (took me this long to figure out I was worse after having one of my many sodas!). Caffeine increases dopamine release, so should actually be helpful to someone with DRD, but I get more dystonic and akathesic (I may have totally invented that word, oh well).
I mean, there's a chance this IS DRD but that would basically mean it's gonna be hard to find tx that don't make me worse. The only definitive things are 1) I have dystonia and 2) my neurotransmitter levels in my CSF are severely low (dopamine level is 42, ref. range is >150; Serotonin level is 27, ref. is >67; biopterin [precursor to dopamine] is 8, which is low but I don't know the ref. for that one). Somewhat importantly, my neopterin level is normal. neopterin is supposed to be low in classic DRD (along with biopterin).. who knows what that means.
Now what's left to figure out is whether this is a primary dystonia (DYT1 negative), a primary DRD, a secondary DRD from mito, or secondary dystonia from SSRIs (possible, not common though).
I guess I'll find out more on Friday. I will say I'm drawing the line at spinal taps.. no more for me!
P.S. thank you for your other post, I did see it :)
P.P.S. I think I DO have some good news coming my way soon. Furry four legged news :D (about time!)
I still don't have a definitive diagnosis... unless you ask to jerk docs at CC. CC thinks I have dopa-responsive dystonia, ignoring completely the fact that I am not responsive to dopamine... or rather, I am REVERSELY responsive to dopamine. I even have adverse reactions to caffeine (took me this long to figure out I was worse after having one of my many sodas!). Caffeine increases dopamine release, so should actually be helpful to someone with DRD, but I get more dystonic and akathesic (I may have totally invented that word, oh well).
I mean, there's a chance this IS DRD but that would basically mean it's gonna be hard to find tx that don't make me worse. The only definitive things are 1) I have dystonia and 2) my neurotransmitter levels in my CSF are severely low (dopamine level is 42, ref. range is >150; Serotonin level is 27, ref. is >67; biopterin [precursor to dopamine] is 8, which is low but I don't know the ref. for that one). Somewhat importantly, my neopterin level is normal. neopterin is supposed to be low in classic DRD (along with biopterin).. who knows what that means.
Now what's left to figure out is whether this is a primary dystonia (DYT1 negative), a primary DRD, a secondary DRD from mito, or secondary dystonia from SSRIs (possible, not common though).
I guess I'll find out more on Friday. I will say I'm drawing the line at spinal taps.. no more for me!
P.S. thank you for your other post, I did see it :)
P.P.S. I think I DO have some good news coming my way soon. Furry four legged news :D (about time!)
Bearygood
12-09-2008, 11:53 AM
I'm going to be waiting for your update on the doctors' visits! Also, I read some time ago about a center for rare/hard to be dxed diseases and I think it was here in the city. From what I remember they deal with people like you. I can't promise I'll be able to find the info. but I'm going to try.
Congrats in advance on the new member of the Wallis family! Do you have a name picked out or will the dog come with one?
Congrats in advance on the new member of the Wallis family! Do you have a name picked out or will the dog come with one?
Wallis86
12-09-2008, 04:22 PM
Thanks for trying to find the info. I will definitely update you as I get any info. The dog will come named :) I will know one way or another by late next week if I'm going to get him yet. I;m excited...vthis is my one bright spot in my life currently.
MSJayhawk
12-09-2008, 09:17 PM
Many congratulations to your new family member!
Wallis86
12-10-2008, 12:00 AM
Thanks Jayhawk, it's been a long time coming (2 years). Hope to be able to tell you that it'll only be a few more weeks, otherwise I've got to wait until May, which I don't want to do at all. :)
april1848
12-10-2008, 07:56 PM
Let us know when you get the dog! Yay, this has been a long time coming.
Bearygood
12-10-2008, 11:28 PM
I'm not sure that this is what I saw -- I remembered it as being in NY but I might have been mistaken. In any event, if it ISN'T (and it very well might be) it seems like they would probably know about any other programs in the works.
"NIH Launches Undiagnosed Diseases Program - Clinical Researchers to Tackle the Most Puzzling Medical Cases" http://www.nih.gov/news/health/may2008/nhgri-19.htm
On another note, you might already know this but there's a Mitochondrial and Metabolic Disease Center at the University of California in San Diego. Hopefully you'll get more answers soon and won't need either one of these but just in case...!
"NIH Launches Undiagnosed Diseases Program - Clinical Researchers to Tackle the Most Puzzling Medical Cases" http://www.nih.gov/news/health/may2008/nhgri-19.htm
On another note, you might already know this but there's a Mitochondrial and Metabolic Disease Center at the University of California in San Diego. Hopefully you'll get more answers soon and won't need either one of these but just in case...!
Wallis86
12-11-2008, 11:06 AM
Beary,
I CAN tell you that these docs I'm seeing tomorrow and Monday are very intrigued by my case. The head of Columbia neurology, Dr. Mitsumoto is the doc who set up these appointments. He keeps saying that I'm so interesting. Interesting is good, until you're talking about your health!
I think this time I'm going to need a muscle biopsy. I have Christmas Tree Disease (rash), and of course it is a million times worse for me than most people. Instead of just being on my chest, its on my hips, legs, arms, neck, back and ears! I'm worried they won't do a surgical procedure while I have a virus... Is that a valid concern? It's not a highly contagious virus or anything. I really wanted to get this out of the way before Jan.
Thanks for the info, I think you and I had discussed the NIH program, and I think its in Maryland or DC. Hopefully, I'll get answers this week and won't need it though!
I CAN tell you that these docs I'm seeing tomorrow and Monday are very intrigued by my case. The head of Columbia neurology, Dr. Mitsumoto is the doc who set up these appointments. He keeps saying that I'm so interesting. Interesting is good, until you're talking about your health!
I think this time I'm going to need a muscle biopsy. I have Christmas Tree Disease (rash), and of course it is a million times worse for me than most people. Instead of just being on my chest, its on my hips, legs, arms, neck, back and ears! I'm worried they won't do a surgical procedure while I have a virus... Is that a valid concern? It's not a highly contagious virus or anything. I really wanted to get this out of the way before Jan.
Thanks for the info, I think you and I had discussed the NIH program, and I think its in Maryland or DC. Hopefully, I'll get answers this week and won't need it though!
Nenu
12-11-2008, 08:57 PM
Wallis, I too posted to you on another thread, but thank you for the extensive updates. I think about you all the time and how you're doing. :angel:
Wallis86
12-12-2008, 04:55 PM
Well I saw the movement specialist at columbia... I swear I attract jerks. This guy was the biggest pompous jerk ever. He's told me that my dystonia is a reaction to stress?! He video taped my movements and told me what HE wants to do next is to admit me to the hospital long term, do intensive PT (obviously the 4x a week I was doing with no success doesn't count), and involve a psychiatrist to determine the source of my stress. I must have been one stressed out 11 year old by his standards. I'm so tired of the stress fall back. It's a crock. Oh and he told me I can't go back out to CA. When he asked me what I was doing to allow myself to live alone I told him home care and that I was getting a service dog, he laughed at me. Clearly he's never seen the help a service dog can provide. I was really displeased. Oh well, I have the mito guy on Monday. Oh he also told me to ignore the fact the my CSF neurotransmitters were really really low because "no one knows how to run that test". Apparently no one is as smart as he is.
MSJayhawk
12-12-2008, 09:03 PM
Jerks abound in all professions. It is unfortunate that you have to meet a jerk who lacks bedside manners. I dealt with a doctor like that this summer. I told him he was never to go near my mother and reported him to the hospital administration.
As to a service dog, those who never need a service dog will never understand the independence a four legged angel can provide. My neurologist loves my SD. I have had tremendous support from the MS Clinic and many others who are getting SDs as a result of meeting mine.
In 2002 I went to UCLA. The neurologist there tried the Psych angle with me. I told her I did not appreciate her doubts. She tried to tell me that I was misdiagnosed in 1982. She could not believe the medical records. After battling to re-establish my diagnosis, she gave in, but left me with "90% sure its MS". I am back with KUMC in Kansas City. My neurologist is a fine woman who knows MS.
Jerks abound in every field you enter. I have met jerks in every country, BUT I must say, there are generally more compassionate people than jerks. The last Jerk Doctor I dealt with finally gave up his practice. LOL< it is no wonder. He needed an infusion of compassion and a long term stay with a psych doctor.
My SD helps me to stay mobile and can alert me on seizures. Working with your four legged angel will bring you daily, unconditional love. SDs do not judge, they serve with a passion!!
As to a service dog, those who never need a service dog will never understand the independence a four legged angel can provide. My neurologist loves my SD. I have had tremendous support from the MS Clinic and many others who are getting SDs as a result of meeting mine.
In 2002 I went to UCLA. The neurologist there tried the Psych angle with me. I told her I did not appreciate her doubts. She tried to tell me that I was misdiagnosed in 1982. She could not believe the medical records. After battling to re-establish my diagnosis, she gave in, but left me with "90% sure its MS". I am back with KUMC in Kansas City. My neurologist is a fine woman who knows MS.
Jerks abound in every field you enter. I have met jerks in every country, BUT I must say, there are generally more compassionate people than jerks. The last Jerk Doctor I dealt with finally gave up his practice. LOL< it is no wonder. He needed an infusion of compassion and a long term stay with a psych doctor.
My SD helps me to stay mobile and can alert me on seizures. Working with your four legged angel will bring you daily, unconditional love. SDs do not judge, they serve with a passion!!
Wallis86
12-13-2008, 10:48 AM
I totally agree Jayhawk, I know the unbeatable benefits that a service dog provides. I do understand that if you never need one, you'll never understand how a SD can help someone. I wish people could see the blessings that they are though.
I just seem to be attracting Jerk Docs recently, I have handfuls of them. I feel like I've gone back in time to when I was 11, except I'm severely more disabled, yet people are still trying to tell me this is all in my head. The guy didn't even allow me to explain all my symptoms: myoclonus, dystonic storms, myoclonic jerks, neuropathy... hope the next guy is nice.
Hi to Tiny.
I just seem to be attracting Jerk Docs recently, I have handfuls of them. I feel like I've gone back in time to when I was 11, except I'm severely more disabled, yet people are still trying to tell me this is all in my head. The guy didn't even allow me to explain all my symptoms: myoclonus, dystonic storms, myoclonic jerks, neuropathy... hope the next guy is nice.
Hi to Tiny.
Nenu
12-15-2008, 01:12 AM
I'll be sure to check for an update Monday Wallis. Sorry you had to go through that with the other guy. :(
Wallis86
12-15-2008, 02:25 PM
Hi all,
Well, here's my next doctor update. Dr. Hirano was quite pleasant, thankfully! He spent two hours talking with us. After extensive talking and an examination, he feels there are three possibilities that might be my "issue". He does think its possible that I have a neurotransmitter synthesis disease, but NOT dopa responsive dystonia, since I am clearly not dopa responsive. That's the best bet probably. But he also thinks its possible that I have some kind of autoimmune problem that is attacking my CNS, although he acknowledges that MS was ruled out. This is a possibility since my problems became really bad after I discontinued my immune suppressing drugs. Thirdly, its possible I have a disease that hasn't been described yet.
So my next step might be trying a serotonin based drug to see if it might help. He doesn't think this is mitochondrial, although has offered that we can do a muscle biopsy at any point.
(an he actually said "oh good" when I said I was getting a service dog) :)
Well, here's my next doctor update. Dr. Hirano was quite pleasant, thankfully! He spent two hours talking with us. After extensive talking and an examination, he feels there are three possibilities that might be my "issue". He does think its possible that I have a neurotransmitter synthesis disease, but NOT dopa responsive dystonia, since I am clearly not dopa responsive. That's the best bet probably. But he also thinks its possible that I have some kind of autoimmune problem that is attacking my CNS, although he acknowledges that MS was ruled out. This is a possibility since my problems became really bad after I discontinued my immune suppressing drugs. Thirdly, its possible I have a disease that hasn't been described yet.
So my next step might be trying a serotonin based drug to see if it might help. He doesn't think this is mitochondrial, although has offered that we can do a muscle biopsy at any point.
(an he actually said "oh good" when I said I was getting a service dog) :)
MSJayhawk
12-15-2008, 02:35 PM
That is some excellent news. I know you do not have your diagnosis yet, but it is excellent that you were able to work with a nice doctor (and one who supports your service dog!!). Keep on keeping on and do let us know how you progress.
Wallis86
12-17-2008, 08:13 AM
Jayhawk,
Just a little update to say I'm officially joining the service dog club. 52 days left :)
Just a little update to say I'm officially joining the service dog club. 52 days left :)
MSJayhawk
12-17-2008, 11:45 AM
That sounds great! It will make 2009 a good year for you!:):):) Remember to keep receipts for your dog food, vet bills, any harness or leash, collars, etc. These are all tax deductible (medical equipment). Some states even have stipends to pay for dog food.
Wallis86
12-17-2008, 01:11 PM
Thanks for that info Jayhawk. Do you know how you find out about and receive those stipends? That would be great for me and my SD using friends.
MSJayhawk
12-17-2008, 01:25 PM
I am on an online site for dogs. The site includes a group/forum for SDs. The site is free of charge and you should be able to join without a problem. Tiny has his own web page there. I would think that your state rehabilitation agency (equivalent agency that deals with the disabled) should be able to assist you as to state assistance for SDs. As to the tax deductible features, these are federal tax deductions. Under ADA, a SD is a medical device. The maintenance and upkeep of the medical device is deductible. When I itemize my deductions, on Schedule A I list my expenses which are related to my SD.
Wallis86
12-17-2008, 06:06 PM
I think I may have found it but I didn't find Tiny on there. I did see the forum. I am actually in several groups relating to the organization I am getting my dog from. I really enjoy reading about the dogs in training and active SDs.
Thanks for the info on the taxes, it will be very helpful.
Off that topic, does anyone know how quickly vicodin stops working for you, I've only taken it 7 times but its not giving me relief. I don't like taking it, but my toes have been so painful from dystonia and spasticity. I fell asleep last night and my foot started to relax, as it does when I'm sleeping, but the pain of my toe moving woke me up with such excruciating agony that I was almost screaming.
Thanks for the info on the taxes, it will be very helpful.
Off that topic, does anyone know how quickly vicodin stops working for you, I've only taken it 7 times but its not giving me relief. I don't like taking it, but my toes have been so painful from dystonia and spasticity. I fell asleep last night and my foot started to relax, as it does when I'm sleeping, but the pain of my toe moving woke me up with such excruciating agony that I was almost screaming.
Nenu
12-26-2008, 08:57 PM
Wallis, thank you for the update sweetie.
An unidentified condition... that certainly makes things very interesting to say the least. :eek:
I hope you've managed to have a nice holiday through this all. :)
An unidentified condition... that certainly makes things very interesting to say the least. :eek:
I hope you've managed to have a nice holiday through this all. :)
jobalso
01-02-2009, 05:51 PM
Jerks abound in all professions. It is unfortunate that you have to meet a jerk who lacks bedside manners. I dealt with a doctor like that this summer. I told him he was never to go near my mother and reported him to the hospital administration.
As to a service dog, those who never need a service dog will never understand the independence a four legged angel can provide. My neurologist loves my SD. I have had tremendous support from the MS Clinic and many others who are getting SDs as a result of meeting mine.
In 2002 I went to UCLA. The neurologist there tried the Psych angle with me. I told her I did not appreciate her doubts. She tried to tell me that I was misdiagnosed in 1982. She could not believe the medical records. After battling to re-establish my diagnosis, she gave in, but left me with "90% sure its MS". I am back with KUMC in Kansas City. My neurologist is a fine woman who knows MS.
Jerks abound in every field you enter. I have met jerks in every country, BUT I must say, there are generally more compassionate people than jerks. The last Jerk Doctor I dealt with finally gave up his practice. LOL< it is no wonder. He needed an infusion of compassion and a long term stay with a psych doctor.
My SD helps me to stay mobile and can alert me on seizures. Working with your four legged angel will bring you daily, unconditional love. SDs do not judge, they serve with a passion!!
I had a head MRI and a spinal tap done the first of Dec., the head MRI said I have a 17 mm X 9mm lobular lignal finding in the posterior left parietal occipital white matter junction in the periventricular area. Also, just superior to the frontal horn on the left is another focal ovoid finding which measures about 11 mm X 11 mm. Stating that these can represent the result of white matter ischemic changes from diabetes or hypertension. These are large focal and asymmetric. This could be demyelination for multiple sclerosis. Also the Spinal Tap saw FOUR bands (?) what ever that is! I read info stating that two bands were indicative of MS....I have four. My GP says it's probably NOT MS.....but I have EVERY other symptom of MS as well! I see a nuerologist on the 13th of Jan. I called her office and asked if she treated many MS patients and was told "yes" she has several MS patients. So I hope see catches this quickly because I can't take the pain much longer! Thank you all for speaking out about JERK doctors! I thought I was all alone up here in the northwoods!!!
Thanks again, Jobalso
As to a service dog, those who never need a service dog will never understand the independence a four legged angel can provide. My neurologist loves my SD. I have had tremendous support from the MS Clinic and many others who are getting SDs as a result of meeting mine.
In 2002 I went to UCLA. The neurologist there tried the Psych angle with me. I told her I did not appreciate her doubts. She tried to tell me that I was misdiagnosed in 1982. She could not believe the medical records. After battling to re-establish my diagnosis, she gave in, but left me with "90% sure its MS". I am back with KUMC in Kansas City. My neurologist is a fine woman who knows MS.
Jerks abound in every field you enter. I have met jerks in every country, BUT I must say, there are generally more compassionate people than jerks. The last Jerk Doctor I dealt with finally gave up his practice. LOL< it is no wonder. He needed an infusion of compassion and a long term stay with a psych doctor.
My SD helps me to stay mobile and can alert me on seizures. Working with your four legged angel will bring you daily, unconditional love. SDs do not judge, they serve with a passion!!
I had a head MRI and a spinal tap done the first of Dec., the head MRI said I have a 17 mm X 9mm lobular lignal finding in the posterior left parietal occipital white matter junction in the periventricular area. Also, just superior to the frontal horn on the left is another focal ovoid finding which measures about 11 mm X 11 mm. Stating that these can represent the result of white matter ischemic changes from diabetes or hypertension. These are large focal and asymmetric. This could be demyelination for multiple sclerosis. Also the Spinal Tap saw FOUR bands (?) what ever that is! I read info stating that two bands were indicative of MS....I have four. My GP says it's probably NOT MS.....but I have EVERY other symptom of MS as well! I see a nuerologist on the 13th of Jan. I called her office and asked if she treated many MS patients and was told "yes" she has several MS patients. So I hope see catches this quickly because I can't take the pain much longer! Thank you all for speaking out about JERK doctors! I thought I was all alone up here in the northwoods!!!
Thanks again, Jobalso