Still fearing the worst

[Trevor]

I posted a week or so ago about some things happening to my body. Last year I posted and got positive feedeback. What really worries me is the skin or muscles on my face sag and if I move my head to one side there is a big divet in my cheek and and I can see the ripples of my skin as there is no muscle to tighten it up. My knees hurt as well as my fingers. The skin around my eyes sags also. The joints on my elbows hurt as well as my fingers. I have lost muscle in my arms and legs and later in the day I just want to sit down and do nothing as I'm tired and feel week. I can't wait to go to bed but dread the morning as my body is stiff, knees.fingers hurt and take awile to get going.
When I go the my GP doctor as I have had several emgs by a neuro the last one being in August of 2010 have come back clean he feels that there is nothing wrong with me it is in my head so he prescibes cymbalta for pain I'm having and always being tired. What is happening is progressing and no one has any answers and they just send me me off with a prescription that doesn't to me make any sense. With what is happening to my face as I'm only 45 is a concern when it comes to als. In the past I had twitching and pain but now my body feels wierd. I was having a little shortness of breath here and there and I just dont know at this point where to turn to as I'm not getting the support from my doctor or another doctor I've seen as she said try cymbalta as they believe I have fibromyalia. I asked does it effect your face muscles and why do I have sagging skin as I can grab both sides of my lower chin/face and stetch it out and get a ripple effect.they respond with no it doen't effect your face and I'm well what is up then. But doctors are narrow minded and say try cymbalta.

Each morning I wake up with sore fingers and when I get out bed I feel my knees and bottom of my feet which are sore.

I have a history of ulcerative colitis and had problems in 2008 and 2009 and was on steriods(2008 for 7 months) (2009 for 2 months) October 2009 my colitis became active but I was able for the first time to put it in remission naturally.

If I have something then I would like to know instead of waking up one morning and can't move.

I know you are not doctors but you have a lot of knowledge and advice that /i could follow. I'm reaching out if anyone experienced this face thing with the other symptoms I experiencing.

Thank you once again
Trevor

 

[pumpdoc]

Listen to your docs, nothing you describe to me sounds like ALS, besides you've had numerous clean EMGs

 

[trfogey]

What are you most concerned about, Trevor? If it is your face, you probably should be talking to dermatologists and plastic surgeons, not neurologists and GPs. If it is the pains in your body, then you should be seeing a pain specialist, maybe a rheumatologist. If it is your shortness of breath, you should be seeing a pulmonologist or maybe a cardiologist. Nothing that you talk about in this post seems to call for a neuro, especially since your previous neuro exams and tests were clean.

Second point: At 45, you're not young any more, Trevor. What happened to your face might be due to premature aging, weight loss from the colitis, or side effects from the drugs used to treat the colitis. Depending on what your past lifestyle has been and your genetics, your facial skin may just be predisposed to look older than it is for a few years, starting in your forties.

I can sympathize with how much it bothers you, but if the doctors can't find a pathological reason for it by now, there simply may not be one, and your continuing to insist that there is a pathological reason may cause them to write you off as a kook when it comes to that subject.

My advice to you, then, is:

1) get yourself to the right doctors for your problem, 2) let them figure out what they think is wrong with you, 3) ask whatever questions of those doctors that you have to satisfy yourself that they have indeed figured out what, if anything, is wrong with you, and 4) do what they advise you to do.