A bit about Fibromyalgia research, FM and it’s hanger ons.

A fairly new and quite interesting piece of research suggests that people with fibromyalgia have a higher propensity to a genetic copied gene A1AT (alpha 1) that may be one of the factors contributing to FM. 38% of FM patients had the copy compared to 13% of patients with other neuro illnesses.

I am interested in this genetic mutation’s role in lung disease. At this stage in my own illness my lung disease level is very high (and my heart isn’t great either).  I’m still awaiting the results of the cardiac ultra sound which I assume means the results have gone missing. Meanwhile the waiting list for the lung specialist is so long the GP has me on all the meds needed to keep going until I finally get to see him. (Thankfully I have a good GP). He has taken me off a couple of inhalers and replaced them with seretide and montelukest (and Ventolin). This is stage IV care, so I’m getting what I need until I get to see the specialist. I am still infection free so that’s a massive improvement as I was having chest infections on a 6 to 8 weekly basis since last August. Must admit the Montelukest has some unpleasant side effects but I am hoping they will fade as I get used to it.

Just had a tentative dx of myoclonus from the doc at the Epilepsy clinic. He doesn’t think I have epilepsy, mainly because I don’t lose consciousness I think. Anyway have to have an EEG, so waiting for that appt and then he will see me in six months or so. I forgot to ask what I was supposed to do about the jerking and stuff, but I googled it and find that FM’s old friend magnesium is supposed to help as is calcium. So I’ll have to get back onto that.

This is an interesting little article that looks at how people will delay seeking medical help and dx for fibromyalgia because of fear of how they will be perceived and treated. It is very much behind my refusal to have a dx of ME. I don’t for one moment believe that having a dual dx will help me at all.

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