I am so very bothered today by the results of the muscle biopsy and the medical community. My doctor sent me the results to put in the handy medical notebook she gave me. I am not a doctor or a scientist, but I know enough information about anatomy, physiology, microbiology and medicine to be able to read and grasp the concepts. So here is the result. And I quote "Rare denervated fibers". But what bothers me is that this is not taken seriously. It is disturbing that some changes in muscle are not considered important or "remarkable". It seems as if the medical community has become immune to the small changes and focus on the "remarkable". Suppose this change in muscle is the beginning of the disease process?? I am in tune enough with medicine and my own self to know when I am having changes, so if I sought treatment early in the beginning, and the disease process just has not reared it's ugly head all the way yet, how can this be considered "unconvincing evidence of myopathy"? Wouldn't any evidence of myopathy be considered evidence of myopathy, instead of large and obvious signs? Especially seeing as to how they did not have a specimen of my thigh muscle prior to me becoming sick. Supposing prior to last year my thigh muscle was perfectly healthy with all of the fibers being normal in size and now I have small changes. In many disease processes it has been proven that they start out with small changes like this and become detrimental. It disturbs me that small changes are not taken seriously. All it takes is one single abnormal cell to create cancer that ravages a body.
If only there were a way they could see it from my perspective for a few moments. If they could be in my shoes trying to climb the set of stairs today. Feeling the muscle in my thigh give out in the middle of me pushing off with it. It is a wildly abnormal feeling to have a muscle just give out and stop working in the middle of an activity especially one that involves moving me from one place to another and could result in falling.... Grrrr....
I love my doctors. They have done so much for me in this ordeal, but I am not satisfied with the outlook of the medical community altogether. And now that they have even small amounts of evidence I no longer have insurance because when I finally found doctors who would listen to my concerns, it is to late and I can't work to keep good insurance. This health care system sucks. What sucks even more is the thought that one day in the future my children may face the same road I am on... Grrr......
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It was explained to me after skin bioposy of daughter recently that it was 'done' by an eminent person. Thats good then. I am told that the bioposy is only as good as the person that is doing it. So perhaps the person that did the muscle bioposy could see that the problem but not that it was EDS that was the reason for the rare stuff. Perhaps also with the sue type nature we hear of in the UK they are not prepared to identify which specific type of EDS they were seeing because perhaps they did not know. I know I say this over and over Trish but what you describe often with your systems honestly is what many here experience as EDS.
ReplyDeleteI am not qualified at all, but if all your bloods come back not too bad then that would indicate no cancer? As good as the medical profession is these days I am not sure they are cycic. sp
Perhaps as you climb the stairs your EDS muscles are like mine with their elastic collagen fibres (albeit younger) because of the pain and debilitation they are out of condition and need possibly a core stabilising course and proper long term physiotherapy regime to maintain as much strength for as long as possible.
Over here in the UK children (hopefully those that are diagnosed) are subjected to a very rigid regime at Great Ormond Street Hospital (google it) with the specialists there on initially an in-patient programme for a couple of weeks to be taught a very specialised programme for their muscles which has to be kept up at home and is hard tough going so that their weak eds muslces are in the best place possible to cope with the rigours that life places upon them. Some returning a couple of times a year for the same in patient stay to top up. This is so they don't become like you or I or my daughter and they learn early that their muscles must not atropy despite it being tough going. So if ones children as young as yours are now have bad EDS then they should receive appropriate intervention so that they do not deterioate so. (My daughter is too old unfortunately to have benefited from this regime)
Have you been offered proper ongoing physical therapy to 'maintain' what mobilitliy you hae now before it deteriorates further.
Coming to terms with EDS is hard but honestly I think if it was something like cancer the doctors would know.
I can't mail at minute for boring reasons but will soon. Try not to worry too much.
Spelling bad as hands not working too well. Along with brain so if I have misinterpred your post please forgive me but worrying about everything so is not going to help your overall condition.
Please take care Trish and I am thinking of you.
It's not cancer. I know it's not cancer. But it's not all EDS either. There are to many symptoms that are completely unrelated to EDS,or so they say. I don't really know what to think anymore. I did do physical therapy for a couple of months, but it made things worse. Hips got worse, headaches got worse, then the seizures started, so I don't know. They don't really have regimens here for EDS children to keep them fit, just suggest that we keep them active in sports that won't injure their affective joints.
ReplyDeleteDo you get any muscle twitching? Like movement that are like very miniature spasms but you can see them move? I have that everyday. It's always a different muscle. Right now it is a part of my trapezoid. Frustrating not knowing what is EDS and what is not. Raynaud's is not a part of EDS, or so I am told. But it is so hard to know because noone really knows what comes with EDS, or how it "progresses". I don't know. I am not in denial about the EDS, but at the same time, working in the medical field and seeing how many times big important things are missed, I don't want to find out at the last minute that there is some underlying neuromuscular disorder that my kids could have that may be serious. You know? I am just hitting a wall.
Sorry for no reply to this sooner - hope you see it.
ReplyDeleteyes I get muscle twitching and know others with EDS who also have that.
Over here its well known that many with EDS also have as a co-existing condition Raynauds, google primary and secondary Raynauds (memory poor today) I think thats the terminology. Will email you with info on that if I can remember where the info is that is!
I do understand what you are saying about so many symptoms and missing something the kids could have.
Perhaps the deterioration in your condition is because you have had three children and the extra stresses and strains this has put on your body. Over here Professor Grahame world specialist in EDS says that sometimes for unknown reasons after illness, stress, shock, childbirth, hormonal reasons EDS can get much worse.
One of my frustrations really with EDS is that it is rare and the support systems for those really with more well known conditions such as MS or RA seem so much better.
I understand about hitting a wall.
Which neuromuscular disorders are you thinking about I am afraid my knowledge is poor on that front.
I wish I could give you an EDS holiday - a break from all tests - all worrying about all of it. In the meantime all I can think of is a girlie night in with your girls, foot baths, feet massages, head massages... the lot.
Will email soon I am just having one of those email can't seem to hit send times.
So I do know. I often think all this can't all be EDS can it but am getting so middle aged I just can't be bothered anymore fighting for answers to unsolvable riddles. On pain management courses they encourage to live well with a chronic condition saying that many people spend a long time on a merry go round of consultants, tests etc. to try and find answers etc. I really did take this on board for quite a few years and it worked for a while a sort of enforced holiday from it all. Its hard watching my daughter suffer so with the pain etc. though so I totally get what you are saying.
I just wish you could find some inner peace.
Take care and gentle hug from the UK.
Take care Trish