Hi Jan,
I just wanted to let you know that I was just awarded SSDI. I had been denied 2x, and had a court date to appear before a Judge at the end of Mar.---The judge made a ruling without my appearance in court, and cancelled the court date.
This ruling was made on the diagnosis of MC.
Oh, and by the way I have started to see a new neurologist, and he seems alot more interested in my case, unlike all the others I have seen. So, I am very hopeful that he will be able to figure me out.
I am begining to loose all strength in my legs,and can no longer walk more than a few steps.
I am trying to keep my spirits up....but it sure is hard.
Beth

Beth,

Congratulations! I know it's a long battle to get disability, but it's worth it.

Although you said it was awarded based on MC, I have talked to judges and Social Security and they will not ever award disability on MC alone. However if you have other conditions along with it, they will often consider it. According to their "book" myotonia congenita is not disabling.

So it was probably a combination of things that your doctors submitted that helped (just wanted to clarify because I know others have asked about getting disability).

I'm glad you have a new doctor - hopefully they'll find out why you have the weakness and get you the right treatment. Have you ever had your potassium levels checked when you're at your worst? That would help with the paramyotonia diagnosis.

Jan

Thanks! It took 2 denials and almost 3 yrs. to get it.
I guess I am just assuming it was based on the MC alone.
I dont want to give the wrong idea to others.

The only other conditions I have been treated for is Anxiety and depression.....I have two Dr.'s my ruemotologist and my PCP that have been great, and have always tried to help....Oh, I forgot....I was also diagnosed with Fybromyalgia (excuse my spelling!) Maybe that was the ticket!?

Yes, I have been taking potassium pills for a couple yrs. now, and Once I went to the ER and I ended up needing 4 bags of potaassium..... So, I know I have isssues with potassium levels. But of course that didnt seem to make a difference to the Dr.'s @ the MDA. They still say I have MC. Go figure!

I have made several attempts to bet disability here in Britain, usually at someone else's prompting, but have never been successful.

After one appeal the woman representing Social Security, who were responsible for the disabilty benefit back then, urged me to try again - she was shocked at how much of a struggle it was for me to stand up and leave the room. Nice to know that seeing me in difficulty had an affect on someone but it's not changed anything, they still turn me down.

I think part of the problem is that MC affects each individual differently, there's no real rule of thumb betweem cases. The fact that it's also a rare condition and not even medical professionals understand it fully does not help either.

However, I'm not bitter, good luck to anyone who can get something from the system!

Hi, and thanks for your input. I've been careful not to say all of my symptoms because they don't all match everyone else. I'm realizing more every day that there's got to be underlying factors that are missing.
My symptoms are just like yours where my walking is getting harder and harder to hide. I have a lot of muscle spasming and terrible pain whenever I over move or over do it. I've checked CPK and THYROID LEVELS and they're fine. It's difficult to see myself falling apart after running a successful remodeling business for 25 plus years. This past 15 months I can only compare to what a muscle builder who lifts every day for many years, feels like if they stop abruptly.

David, a little mosquito was my undoing :-( I had no idea West Nile Virus could be so devastating and it took a year for the doctors to finally get the diagnosis right even though I knew when I'd been bitten and exactly when the symptoms started. My legs felt like concrete and I was in so much pain I couldn't sit down to watch a TV program. I slept for 20 hours a day for the first year.

When your health changes dramatically fairly quickly you can be sure it's not MC unless you started taking a contraindicated drug like statins for cholesterol.

Keep looking till you find doctor who will give you a differential diagnosis. We can get other neuromuscular diseases just like anyone else...having MC doesn't make us immune to MS, ALS, lupus, etc. but the doctors tend to lump it all together. Since you already had a thyroid disease you could have other autoimmune issues, too. It might be good to see a rheumatologist to get some bloodwork.

Jan

Thanks Jan! As usual, more good advice.
I know I have something going on with Adrenals. I'm a mess when I become anxious.My whole body and being is effected

Hi
I haven't been on in awhile but I too suffer with the same symptoms as you describe and have for many years. They have been studying tests and I was sent an article that talks about our disease and what they are finding out from the studies. It appears that quite a few people are having these symptoms who have MC. I don't know what it all means but it is very comforting to know others are feeling the same as I do. I hope they find out the correlation soon between MC and pain. Here is the article:

Health status in non-dystrophic myotonias: close relation with pain and fatigue.
Trip J, de Vries J, Drost G, Ginjaar HB, van Engelen BG, Faber CG.

Department of Neurology, Maastricht University Medical Centre, P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands, J.Trip@neurologie.azm.nl.

To determine self-reported health status in non-dystrophic myotonias (NDM) and its relationship to painful myotonia and fatigue. In a cross-sectional study, 32 NDM patients with chloride and 30 with sodium channelopathies, all off treatment, completed a standardised interview, the fatigue assessment scale (FAS), and the 36-item Short-Form Health Survey (SF-36). Beside formal assessment of pain, assessment of painful or painless myotonia was determined. The domain scores of the SF-36 were compared with Dutch community scores. Apart from the relationship among SF-36 scores and (1) painful myotonia and (2) fatigue, regression analyses in both NDM groups were conducted to determine the strongest determinants of the SF-36 domains general health perception, physical component (PCS) and mental component summary (MCS). All physically oriented SF-36 domains in both NDM groups (P

Sorry the article was cut off when I copied it so here is the whole one:

1: J Neurol. 2009 Mar 1. [Epub ahead of print]
Health status in non-dystrophic myotonias: close relation with pain and fatigue.
Trip J, de Vries J, Drost G, Ginjaar HB, van Engelen BG, Faber CG.

Department of Neurology, Maastricht University Medical Centre, P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands, J.Trip@neurologie.azm.nl.

To determine self-reported health status in non-dystrophic myotonias (NDM) and its relationship to painful myotonia and fatigue. In a cross-sectional study, 32 NDM patients with chloride and 30 with sodium channelopathies, all off treatment, completed a standardised interview, the fatigue assessment scale (FAS), and the 36-item Short-Form Health Survey (SF-36). Beside formal assessment of pain, assessment of painful or painless myotonia was determined. The domain scores of the SF-36 were compared with Dutch community scores. Apart from the relationship among SF-36 scores and (1) painful myotonia and (2) fatigue, regression analyses in both NDM groups were conducted to determine the strongest determinants of the SF-36 domains general health perception, physical component (PCS) and mental component summary (MCS). All physically oriented SF-36 domains in both NDM groups (P

Hi again,
Apparently I cannot copy the entire study to this forum. Sorry about that. If anyone wants to read the entire article please let Jan know because she has it as well. Thanks!

Hi everyone, i have been off line for a while couldnt figure out why internet wouldnt work but Daniel fixed it in the end, also ,i have been,not myself, been in lots of pain,nothing unusual in that only the duration, months and months in the same place,my shoulder,bad headaches,but i get migrains,so didnt think much of it, however a couple of times i had a temprature which would be gone in the morning...very strange, so went to the doctors, he found it hard to understand why i had not gone to him earlier with severe muscle pain and stiffness..ha, anyway he had bloods done ,e.s.r. was 52 a month later did them again and it was 36, he wanted to wait another month and try the test again,so had another blood test friday ,will have results in 10 days or so ,but doctor says he thinks i may have fibromyalgia..Jan does our condition predispose us to other muscle complaints. dont like this ,not been myself at all,been wanting to put my jim jams on and go to bed and stay there,feeling very sorry for myself,,,any advice?

Type of Myotonia: MSN Messenger

That's a pretty high sed rate...it can go up after a viral infection or it can be related to a more long-term issue like autoimmune problems. But since it's coming down, I would suspect the former.

I think we are more prone to some conditions like fibromyalgia because we tend to damage our muscles by pushing against the stiffness. I came across this really great article today that I'm going to post separately...it should help answer some questions about pain and MC.

Keep in touch!

Jan