unidentified myopathy?

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I was suspected of having polymyalgia rheumatica after a heart op.  that went well - only I didnt recover muscle strength in spite of time effort and remedial classes. Now four years later even standing is becoming exhausting work; Im tired dull and depressed . Oddly it doesnt hurt, never has, which seems to mean it is NOT p.m.r ?

Has anyone any knowledge of "unidentified myopathy" ? Please say if you know anything about it!  Doctors say I will just get worse, slowly with any luck, ending up in bed too feeble even to hold up a book.  

I really wd prefer to know just what Fate has in store but Docs I've asked  refuse to be clear.   Steroids didnt work for me, I'm told, but maybe there are courses, medecines, regimes, that can extend ability? .  I am a bit desperate and would love to hear from someone with knowledge.

 

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  • Posted

    As you probably know myopathy just means muscle disease. And unidentified means they are stumped! It may be something very rare or even a condition which has not previously been "discovered". I am the UK cooridnator for an ultra rare genetic muscle condition in which people are left like this for an average of about 25 years, though due to genetic testing the average delay is getting shorter. Have they done genetic testing for you? The costs have come way down in recent years and given your prognosis whole exome sequencing is well justified in my opinion. 

    Polymyalgia is a common misdiagnosis for my condition - McArdle Disease. If people are undiagnosed and give up any activity they lose aerobic fitness and become almost totally disabled. If you want to see if it might be McArdle's, look for the web site for AGSD UK, find the "Type V - McArdle Disease" section and the third link in the bullet point list is for "Could my problems be due to McArdle Disease". Good luck.

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    • Posted

      Andrew, thank you very much I just found your reply sent Three Months ago!  The 2 rheumatologists and one neurologist I saw touched on the  "possibility of" genetic cause for this weakness.     I will look at the website AGSD right away. 

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  • Posted

    I assume you have exercised second and third opinions. I went through a lot of doctors on the way to my myasthenia diagnosis. I stayed with several of them way to long. It is possible that the operation or one of the drugs taken during or after it triggered an autoimmune disease particularly one like myasthenia. You use the label “doctor”, I assume you’ve seen several types of specialists. Make sure one is a neurologist.  

    One of the techniques that is used to treat inflammatory/autoimmune diseases when a diagnosis can’t be found is intravenous immunoglobulin (IVIG). It can be used as a treatment of last resort for these diseases. There can be some very serious side effects, especially if you have diabetes. However, these can be controlled with various techniques and they are temporary. It is very expensive and there is no certainty of success. But if you are desperate one might try this.

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    • Posted

      Peter thank you very much for your reply which I just found.  I'm booked to see neurologist in June (2 months ahead) and will meantime read up about IVIG.  It's been a help coming back to Patient website.  I'd given up - and  of course forgotten my password!

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  • Posted

    Nice article on IVIG on Medscape

    https://emedicine.medscape.com/article/210367-overview

    This stuff worked for me. Used it as a bridge to get the to the Cellcept working. My side effect was high blood pressure, they pump a lot of fluid into you. The standard dose is given over a 5 day period every month. They don't have to be five days in a row. You can go Wen, Thur, Fri, Mon, Tue for Instance. Gives you a couple of days to recover from side effects. I've had doctor's tell me that you can do less than 5 days. I don't believe them, maybe for maintenance, but I don't do maintenance, I go for remission.

    If it is autoimmune you will need a long term strategy. My doctor's like Cellcept because it doesn't have as many side effects as other drugs in its class. No matter where you go with this a lot of what is known is not written down, it depends on what your doctor knows.

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