Snickers60
10-09-2008, 04:04 PM
Hello, I'm a newbie here.
I was diagnosed with Mitochrondrial MD back in 1993. I also have fibromyalgia and a few hundred other things....SMILE...ok..let's don't :)
I have been in a serious, serious health and muscle decline for the past 3-5 years and this year has taken me to a Scooter. I've been staring at them for a long, long time.
No longer able to get groceries, do housework, get dinner only occasional...just living, breathing in and out has become a huge chore. The only parts not affected so far are heart and lungs and liver.
My Neuro says I'm severe.........and is sending me to TOP DOG NERUO she says...in Atlanta in next few weeks.
I'm sooooooooooooooooooo discouraged. Just turned 60, went on a cruise and wound up collasping at LAX and in hospital unable to move. WAYYYYYYYYYY overdid. Understatement.
Anyone here have MITO.......how are you..........vitamin cocktail help ?
How bad is it for you ?
THANKS sooooooooo much for reading this far.
Snickers60
I was diagnosed with Mitochrondrial MD back in 1993. I also have fibromyalgia and a few hundred other things....SMILE...ok..let's don't :)
I have been in a serious, serious health and muscle decline for the past 3-5 years and this year has taken me to a Scooter. I've been staring at them for a long, long time.
No longer able to get groceries, do housework, get dinner only occasional...just living, breathing in and out has become a huge chore. The only parts not affected so far are heart and lungs and liver.
My Neuro says I'm severe.........and is sending me to TOP DOG NERUO she says...in Atlanta in next few weeks.
I'm sooooooooooooooooooo discouraged. Just turned 60, went on a cruise and wound up collasping at LAX and in hospital unable to move. WAYYYYYYYYYY overdid. Understatement.
Anyone here have MITO.......how are you..........vitamin cocktail help ?
How bad is it for you ?
THANKS sooooooooo much for reading this far.
Snickers60
Sponsor
Wallis86
10-09-2008, 08:42 PM
Hey Snickers,
I might be a fellow mitoer also. I'm waiting on my test results and possibly going for a muscle biopsy. My mito would be somewhat atypical, if there reall is such thing as typical mito. I just got some blood work back stating that some of my amino acid levels could be due to a pyruvate dehydrogenase E3 deficiency, which I guess is a type of mito. But I'm still waiting on other results.
I have dystonia and spasticity in my legs and sometimes my trunk and arms, myoclonus conscious seizures, GERD, severe hypoglycemia, tremors, migraines, and probably more but I don't remember! I also have a completely healthy twin sister!
I haven't started any treatment except baclofen for the spasticity, which hasn't helped, and I'm hoping to just get this mito diagnosis so I can stop wondering what's wrong with me and move on! I'm in a wheelchair most of the time out of the house, use crutches for shorter distances, but can still walk around my apartment (although with a very spastic gait!).
I might be a fellow mitoer also. I'm waiting on my test results and possibly going for a muscle biopsy. My mito would be somewhat atypical, if there reall is such thing as typical mito. I just got some blood work back stating that some of my amino acid levels could be due to a pyruvate dehydrogenase E3 deficiency, which I guess is a type of mito. But I'm still waiting on other results.
I have dystonia and spasticity in my legs and sometimes my trunk and arms, myoclonus conscious seizures, GERD, severe hypoglycemia, tremors, migraines, and probably more but I don't remember! I also have a completely healthy twin sister!
I haven't started any treatment except baclofen for the spasticity, which hasn't helped, and I'm hoping to just get this mito diagnosis so I can stop wondering what's wrong with me and move on! I'm in a wheelchair most of the time out of the house, use crutches for shorter distances, but can still walk around my apartment (although with a very spastic gait!).
Snickers60
10-11-2008, 10:19 AM
Hello, thanks for your post. Do you remember having symptoms all your life as you look back or is this something new to you ?
I can look back early into childhood and see it's been there all the time. I always felt bad that I could not keep up with other kids. I just knew in my little mind that something was not right with me. I did not have the stamia they did. I got exhausted over things that did not even wind them.
I was sickly with IBS, Migraines, Gerd, WEAKNESS, learning disabilities after 6th grade, and a long host of other symptoms like TIA'S, stroke like episodes.
I have ragged red fibers in my biopsy. I have no idea what kind you have...........that's a new one on me, but hey, there's a go zillion different kinds that cause various symptoms in each individual. Certainly it's a very complex illness.
The guy DOC ....I will go to in Atlanta suppose to be the TOP DOG for Genetics and finding out exactly what kind one has and prescribing the Vitamin Cocktail for them.
Waiting on vitamin testing now and hopefully will see him in November..should be interesting.
Keep me updated if you don't mind, I'll like to see how it turns out for you.
THANKS, SNICKERS60
I can look back early into childhood and see it's been there all the time. I always felt bad that I could not keep up with other kids. I just knew in my little mind that something was not right with me. I did not have the stamia they did. I got exhausted over things that did not even wind them.
I was sickly with IBS, Migraines, Gerd, WEAKNESS, learning disabilities after 6th grade, and a long host of other symptoms like TIA'S, stroke like episodes.
I have ragged red fibers in my biopsy. I have no idea what kind you have...........that's a new one on me, but hey, there's a go zillion different kinds that cause various symptoms in each individual. Certainly it's a very complex illness.
The guy DOC ....I will go to in Atlanta suppose to be the TOP DOG for Genetics and finding out exactly what kind one has and prescribing the Vitamin Cocktail for them.
Waiting on vitamin testing now and hopefully will see him in November..should be interesting.
Keep me updated if you don't mind, I'll like to see how it turns out for you.
THANKS, SNICKERS60
Wallis86
10-11-2008, 10:45 AM
Hey snickers,
Ironically I was diagnosed yesterday, but didn't really clear up the mito part. I was dx with severe dopa responsive dystonia with dopamine levels of 40 (they should be 150+). The problem is that many people with mito have DRD as well, and vice versa. Basically, the doc told me at this point it wouldn't matter one way or another if it was secondary to mito because he would treat it the same way, with dopamine. I think he said that he might be able to tell if its secondary after some more tests.
I've had problems from the time I was 11 (11 years ago). But I had little quirky things all my life really. I may be headed to columbia in ny for further mito testing, so ill keep you posted.
Unfortunately, I've had way to severe DRD for too long so I won't have excellent response to meds, only partial response, but I have no issue walking with crutches and I'm getting my service dog very soon.
Ironically I was diagnosed yesterday, but didn't really clear up the mito part. I was dx with severe dopa responsive dystonia with dopamine levels of 40 (they should be 150+). The problem is that many people with mito have DRD as well, and vice versa. Basically, the doc told me at this point it wouldn't matter one way or another if it was secondary to mito because he would treat it the same way, with dopamine. I think he said that he might be able to tell if its secondary after some more tests.
I've had problems from the time I was 11 (11 years ago). But I had little quirky things all my life really. I may be headed to columbia in ny for further mito testing, so ill keep you posted.
Unfortunately, I've had way to severe DRD for too long so I won't have excellent response to meds, only partial response, but I have no issue walking with crutches and I'm getting my service dog very soon.
Snickers60
10-13-2008, 12:59 PM
Sooooooooo sorry to hear about your diagnosis. Don't know much about that kind. There's so many and so much info. Please keep me updated. So sorry you are having to go through this so young. I got sick very young also so I can relate.
Can't type much today.......sorry........in debilitated pain.
BLESSINGS, SNICKERS60
Can't type much today.......sorry........in debilitated pain.
BLESSINGS, SNICKERS60
Wallis86
10-13-2008, 02:16 PM
Yes, mito is such a broad spectrum of diseases/symptoms! It's any wonder they can characterize the disease at all! But I will certainly let you know what I discover as per the mito dx.
Feel better quickly!
Feel better quickly!
Snickers60
12-04-2008, 10:03 AM
I wish there was more actitivy here. I'm waiting to see Doc in Atlanta soon.
Have been really, really bad lately. Shut in totally, pain and debilitation off the charts.
NEED ENCOURAGEMENT........anyone on MITO ?
Have been really, really bad lately. Shut in totally, pain and debilitation off the charts.
NEED ENCOURAGEMENT........anyone on MITO ?
Wallis86
12-04-2008, 11:09 AM
Snickers,
So sorry you're having a rough time. I am too sadly. I'm going on Dec. 15 to see the mito doc at Columbia in NY. I've moved home to my dad's, but the house isn't accessible so I have to be carried everywhere. I somehow contracted a virus that made me have a rash that is essentially chicken pox, EVERYWHERE. Of course it's worse than it should be and terribly itchy. My dystonia is still terrible too. I've been so exhausted I keep falling asleep during the day, even sitting in my wheelchair at a restaurant. It's terrible.
I truly hope the doctor can help you soon.
Feel good,
Wallis
So sorry you're having a rough time. I am too sadly. I'm going on Dec. 15 to see the mito doc at Columbia in NY. I've moved home to my dad's, but the house isn't accessible so I have to be carried everywhere. I somehow contracted a virus that made me have a rash that is essentially chicken pox, EVERYWHERE. Of course it's worse than it should be and terribly itchy. My dystonia is still terrible too. I've been so exhausted I keep falling asleep during the day, even sitting in my wheelchair at a restaurant. It's terrible.
I truly hope the doctor can help you soon.
Feel good,
Wallis
Bearygood
12-07-2008, 02:05 PM
Wallis, I haven't been around lately but had to check up on you. I see there have been some huge changes in your life! I'm sorry to hear that answers are still missing and I really hope you get them soon. I just wanted to let you know that I'm thinking about you and sending you lots of virtual (((hugs))).
Nenu
12-07-2008, 04:05 PM
Wallis, I missed your updates terribly! Stopping in to say hello to you girl. Have a happy and safe holiday. I'll be praying for you. :angel:
Snickers60
12-23-2008, 11:44 AM
Hey Wallis..........God bless you child. You really are having a TOUGH, TOUGH TIME. I'm soooooooo sorry.
I'm going for a brain MRI and ECHO today. Had to cancel last time because I just could not go.
I'm so sick lately I can't even get to Doc/Exam/test appointments. I'm in a deep, deep pit.
I've got to get out of some of this PAIN. :mad:
BLESSINGS AND HEALING TO YOU WALLIS.........this too shall pass......IT BETTER ;)
I'm going for a brain MRI and ECHO today. Had to cancel last time because I just could not go.
I'm so sick lately I can't even get to Doc/Exam/test appointments. I'm in a deep, deep pit.
I've got to get out of some of this PAIN. :mad:
BLESSINGS AND HEALING TO YOU WALLIS.........this too shall pass......IT BETTER ;)
dutchess99
12-24-2008, 12:00 AM
hi! I have been diagnosed with mitochondrial myopathy since July 2008. I have been doing so so with slow progression. I also have SLE, fibro, migraines, IBS, Raynaud's, and few others. Sometimes it seems the list could keep going on and on. The drs have been trying me on a vitamin cocktail in addition to my other meds but it hasn't worked. So the other day, they started me on DHEA because I got salmonella poisoning and it really through me for a loop and it put my body in a tail spin. Let me know how ya'll are doing. God bless ya'll.
Snickers60
12-24-2008, 07:27 AM
Dutchess, do you know what KIND of MITO you have ? I'm suppose to be going to Atlanta to one of the best Doc's in the country, but it cost a lot of money and VITAMINS is their only answer, so I'm wondering if I will go that far. I already know I have ragged red fibers and probably MERFF or MELAS, so I just dunno how much Medical DEBT I can put us in to find out something that will really not help me.
My hubby is a two time cancer survivor and we've lost everything once before from medical.
If there was real help, I would look at it differently.
Do you know the exact kind you have ? What vitamins do you take ?
HAS ANYTHING HELPED YOU ?
My hubby is a two time cancer survivor and we've lost everything once before from medical.
If there was real help, I would look at it differently.
Do you know the exact kind you have ? What vitamins do you take ?
HAS ANYTHING HELPED YOU ?
dutchess99
12-29-2008, 12:38 AM
Snickers, I don't remember what kind it is without looking. So much medical mumbo jumbo. I currently take CO enzyme Q10 250 mg, Lcaritine 250 mg and DHEA 200 mg (now they have decided to try and build back up some muscles that have atrophied). The first two helped some for a little while, but when I got sick, they didn't help me once my body got stressed. Now I am trying to recover from the set back that was over 6 weeks ago. We'll see how the DHEA works.
klattsoe
12-29-2008, 10:57 PM
what is dhea ?
pleases\ explain me
is it good drugs?
pleases\ explain me
is it good drugs?
dutchess99
01-02-2009, 09:45 PM
Dehydroepiandrosterone (DHEA) is a steroid produced by the adrenal glands. DHEA acts like a hormone, so it is called a steroid hormone. A hormone is a chemical produced in one part of the body that is carried to another part of the body where it has a specific effect. The adrenal glands are located on top of the kidneys. Your doctor should recommend it to you, because too much of it can cause some serious side effects, like adrenal failure. It has helped some with my muscles.
Snickers60
01-14-2009, 05:43 PM
Has anyone here tried Ambrotose ? I understand it is doing wonderful things for folks like us.
Dutchess, I too have fibro and a long list of other STUFF. I just don't know where all this comes from nor do they, that's the hard part no !
I'd like to know if the DHEA helps.
I have been taking very low dose steriod and it has helped me tremendously. I actually just got back from a short cruise. I hate to take it, but hate not to take it. I'd rather have a shorter but happier life myself.
Health and blessings, Snickers60:wave:
Dutchess, I too have fibro and a long list of other STUFF. I just don't know where all this comes from nor do they, that's the hard part no !
I'd like to know if the DHEA helps.
I have been taking very low dose steriod and it has helped me tremendously. I actually just got back from a short cruise. I hate to take it, but hate not to take it. I'd rather have a shorter but happier life myself.
Health and blessings, Snickers60:wave:
Randy W
05-01-2009, 12:27 PM
Hi Everyone, I also have a long list of diagnoses which include Myasthenia Gravis, CFS, IBS, inflammatory myophathies, migraines, and the list goes on and on. Several of my Dr's are thinking it is a Mito disease that is causing all the problems, and running an ischemic forearm test shows my mitochondrial production has declined so badly at times it now rarely comes up high enough to register. I have found that my Muscular Dystrophy Association Dr, which MDA has helped with the cost of alot of things, has been an excellent source for testing, and very up to date info on Mito disease. They are scheduled to do more testing, plus I've had several muscle biopsies, plus they have me taking CoQ10 200-400, L-carnitine 500, B-1 100 every day with eating small meals, with an hour nap and battle every day with pain, fatique, and many problems. Even though its easy to let myself get down, especially when getting hammered with this stuff, I know I have to keep positive, and remain hopeful things will turn around , or at least stop progressing. My wife keeps me inline as much as she can, and its easy to return to the old person I was and try to do too much, and end up in trouble. Its a hard disorder to adjust to, but I'm doing the best I can considering the circumstances. Keep your spirits up everone. RandyW
michigani
05-01-2009, 04:37 PM
Hi Randy,
Hang in there, and welcome to the board. This is a great place to vent, get advice and share your story with others. My name is Mark and I'm a 48 year-old male with Limb-Girdle. Progressed now to the point were walking is barely possible. I used a cane for a few years but that doesn't cut it now because I can no longer lift my feet off the ground. My feet just slide which is dangerous. AFOs don't help because it's the hip flexors, not my shins which are the trouble. So I use a roller walker but mostly a scooter. The scooter is a huge help and gets me doing things again that I've been missing out on. I have a wife and 2 teenage daughters that are a big help but I HATE asking for help. But sometimes I must. I'm sure you understand. Take care.
Hang in there, and welcome to the board. This is a great place to vent, get advice and share your story with others. My name is Mark and I'm a 48 year-old male with Limb-Girdle. Progressed now to the point were walking is barely possible. I used a cane for a few years but that doesn't cut it now because I can no longer lift my feet off the ground. My feet just slide which is dangerous. AFOs don't help because it's the hip flexors, not my shins which are the trouble. So I use a roller walker but mostly a scooter. The scooter is a huge help and gets me doing things again that I've been missing out on. I have a wife and 2 teenage daughters that are a big help but I HATE asking for help. But sometimes I must. I'm sure you understand. Take care.