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Tubular Aggregate Myopathy
Hi,
I’m new here and hoping someone out there might be able to help.
I was told, almost 30 years ago, that I have tubular aggregate myopathy but that very little was known about it. Over the last three decades I’ve become accustomed to dealing with certain levels of pain and what seems to have been only a slowly progressive disease. However, earlier this year it suddenly became much, much, worse to the extent that very many everyday movements (such as those involved in dressing) now cause such intense pain that they are nigh on impossible.
I am currently going through the process of rheumatological and neurological investigations but it is quite apparent that tubular aggregate myopathy is still little known and, therefore, not understood.
Does anyone know where I might find any help/information.Thanks.
Reply To: Tubular Aggregate MyopathyHello and welcome. Sadly, like many MD variants there is little information readily to hand. Most often a search of scientific papers may lead the best results. These are some examples
https://medlineplus.gov/genetics/condition/tubular-aggregate-myopathy/
https://pubmed.ncbi.nlm.nih.gov/31448844/
https://www.sciencedirect.com/science/article/abs/pii/S0967586807006625
There is little about the associated pain directly, and even less about exacerbation of the pain other than it is expected over a period of time. Given its links to Calcium and other factors going to see a neurologist is most certainly the best course of action.
I do not know if you have already seen these articles, if you have please let me know what sort of information you are looking for specifically and I will see what can be found.Mike
So many love songs, so little love.
Reply To: Tubular Aggregate MyopathyHello and welcome. Sadly, like many MD variants there is little information readily to hand. Most often a search of scientific papers may lead the best results. These are some examples
https://medlineplus.gov/genetics/condition/tubular-aggregate-myopathy/
https://pubmed.ncbi.nlm.nih.gov/31448844/
https://www.sciencedirect.com/science/article/abs/pii/S0967586807006625
There is little about the associated pain directly, and even less about exacerbation of the pain other than it is expected over a period of time. Given its links to Calcium and other factors going to see a neurologist is most certainly the best course of action.
I do not know if you have already seen these articles, if you have please let me know what sort of information you are looking for specifically and I will see what can be found.Mike
So many love songs, so little love.
Reply To: Tubular Aggregate MyopathyThanks for the response. I have actually already seen the articles mentioned. I accepted, long ago, that I have an incurable myopathy but am trying to establish whether there is any therapy which may relieve what has become the incessant and, often, severe pain it is now causing. I have, over the years, been prescribed painkillers of all sorts but none has ever been particularly effective. I am wondering if treatment with steroids might be the way to go. Whilst this seems to be commonplace in a lot of neuromuscular conditions, I can find nothing about it in relation to tubular aggregate myopathy.
I understand that embarking on steroid treatment is not to be taken lightly but I’m beginning to think that my neurologist is, perhaps, being a little over cautious in not yet agreeing to give it a try.
I should, therefore, be glad to know of anything which might be relevant to the use of steroids with this type of myopathy.Reply To: Tubular Aggregate MyopathyI must side with your neurologist here. Steroids are nasty things to be used only in extreme circumstances. Their side effects are very well know and should be deeply considered before use. I tried them for a brief period and they made no difference to any of my conditions, I have FHSD by the way. Pain help though I recognise is very important. I have body wide pain and it took a long tme to find a combination that worked. Eventually MST and medicinal cannabis proved best, although far from perfect.
What pain meds have you tried if you do not mind telling me? Also have you attended a Pain Clinic for hep?Mike
So many love songs, so little love.
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