New to site. Question about myopathy

[CarolineAnne]

Hello Everyone,

I was diagnosed with FND a couple months ago. I live in the uk. I was diagnosed autoimmune hypothyroidism in 2004. In 2006 I started to get leg weakness. This has progressed to arm weakness and episodes of left side weakness and stroke like symptoms. I cannot tolerate any thyroid meds and so am not on any at the moment. In 2008 I had an MRI which came back clear. I have had two seperate nerve and muscle tests that showed diffuse myopathy. Since then I have moved to a different area and am getting progressively worse. My Endocrinologist thought my episodes sounded like Hemiplegic migraine so I saw another Neurologist. He was very flippant and the appointment was extremely rushed. It felt like he was annoyed at my being there like I was wasting his time. He diagnosed me with FND, told me it would get better on its own and discharged me.

My question is can you have myopathy in FND? I am struggling with this diagnosis as I believe it may be all linked to my untreated Hypothyroidism. Would the Myopathy result point to an organic problem or would this be consistent with FND?

I would be very greatful for any thoughts here and Thankyou in advance

Best wishes

Carolineanne x

[kotovasv]

Hi Caroline, the slowly and steadily progressing weakness in the arms, legs, back, neck etc. is what I have. As the pattern of the weakness does not relate to a muscle disease, some doctors do think it is FND. I honestly very much doubt it, though I have no idea where it might come from. So, I can not tell you whether you (and me) have FND with such symptoms, but can tell you that neurologists can diagnose you with FND if your symptoms look like a myopathy. What they usually do is just disregard any abnormalities at your testing...

[CarolineAnne in reply to kotovasv]

Thankyou for your reply. It's a minefield isn't it? Don't know if you are aware but thyroid problems can cause weakness and you can be Hypo even if the tests are in the normal range. I suspect that is what mine is all down to. Also, I have been reading about Periodic Paralysis over the last few days. It's quite interesting as a lot of people with that get misdiagnosed with FND.

It seems to me like a diagnosis of FND will result from lazy doctoring in a lot of cases. I believe that everything has a reason and we need to find it, not to be fobbed off! I also think that maybe adrenal fatigue symptoms are very similar but of course most doctors do not believe in that either!! When will some doctors realise that we do not have all the medical knowledge about how the body and mind works. It is a terrible disservice that some do to make their patients feel like malingerers!

Sorry, didn't mean to rant its just so frustrating!!!

Thanks again and best wishes

Carolineanne x

[kotovasv in reply to CarolineAnne]

Hi Caroline, thank you for your reply (sorry, I had been travelling and could not answer earlier). Yes, it is so terribly frustrating that we simply do not have ANY place to go and ask for help. Neurologists, psychiatrists are equally helpless when they deal with FND. It is very unfortunate that, instead of just saying "you have a disease that we do not know a thing about, sorry for the lack of our knowledge" they tell us "you do not have any disease, this is a behavioral disorder, work on yourself, and you'll be fine". We cry, we feel like idiots before our family, our employers - nobody cares. You know, Caroline, just before my trip I spent a few days at a hospital, where they did not find anything "organic" and brought a psychiatrist to me who started (as usual) with congratulations about "no neurological disease found" and told me I had nothing to do at the hospital. This time I could not tolerate it anymore - and I told him everything I think about their attitude, their "understanding" of FND, about the lack of the research, I really fought for myself! What this guy finally said was "yes, you got a bad luck indeed..." The only thing he could advise was "to browse the Internet to maybe find a cure some day, because we doctors can do nothing for you".

So, best wishes for you, too, and fight for yourself, we deserve the same attitude as other sick people, and when on Earth the medicine will accept the presumption of innocence, like the law has - so that we do not need to prove that we are not malingerers.

Svetlana.

[pwpl]

for what its worth, I have just spent 3 weeks in hospital, receiving a multitude of tests to find out what i might have. my symptoms were severe muscle fatigue. I could barely walk for 10 minutes couldnt raise my arms to blowdry my hair etc. I am was disagnosed with hypothyroidism 10 years ago and have been treated for this with thyroxine ever since. I know that when my levels are out then I become weak etc. However my thyroid levels were normal & i was going downhill fast. So, after a multitude of tests, mri's, ct's, blood tests, emg & eng testing PLUS woud you believe, a muscle biopsy, which showed no degenerative or inflammatory muscle disease. My final diagnosis was amytromyopathy, which they said could be a result of having had type 1 diabetes for 30 years combined with being hypothyroid. So, they gave me lyrica and cymbalta (an antidepressant which also helps with nerve pain). So far it has just been one week, I feel about 25% better, and also need to do rehab to strengthen my deconditioned muscles, which they say is vital, as being sedentary when you are so fatigued is hard, but it is definitely necessary.

I will keep you posted with any improvements (or not).

Its a long road to find whats wrong in our bodies, but I have to say my neurologists were very compassionate & thorough. ( I am in Sydney, Australia).