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StacyH

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Hey Everyone,

I have been watching this forum since October, but was unable to post until Al came to my rescue! Thank you Al! I have had bodywide twitching and other symptoms since 1995 and basically came to the understanding that this was the way my body was going to work. I was given a full neuro evaluation and tests at Mayo Clinic in Rochester and was told that all was clear! I had many of what I refer to as "flares" over the years with no significant changes.

Two years ago tomorrow I started another "flare" that has been relentless. I now have twitching, cramping, exercise intolerance, and visable muscular changes. L. Thenar atrophy, a large flat spot on my r. quadricip and l. hip flexor muscle. My husband, who is a physical therapist, has done manual muscle testing and cannot find any clinical weakness. I did have an EMG up and down the muscles of the right side of my body and it was clean. I have tried to keep a level head about all of this, but on most days when I get out of bed I feel like I have been run over by a truck. I am no physician, so I will tell you that what I refer to as "atrophy" has not been diagnosed as such by my neuro, but there is a definite change in the look and shape of the muscle.

I'm just looking for advice. I know there are no answers to some of these mysteries and the age of my young children does not allow me to continue down a path of doctoring all the time. I do look to my husband who is extremely knowledgeable and will graciously test my strength and measure my muscles when I ask, however, I try not to let myself go there very often. I'm just curious if there is anybody else who has had symptoms for this length of time only to have them get worse over time, and if so, what type of tests and doctoring have you had done.

Any replies would be greatly appreciated.

Stacy
 
HI Stacy!

Wow, if my poor husband was a PT.......I would have to use a HUGE amount of self control. He has turned into a psdue-massage therapist!
I would feel good if your husband can not detect any clinical weakness. When I went I went to PT, my therapist told me that I was abnormally weak. My neuromuscular doctor said I wasnt clinically weak, sooooo.

You mentioned that you had twitching and 'other' sx back into 1995, do you mind me asking what they were?
I am in the same boat as you, I had als ruled out by an als neuro. I have left thenar mucle thinning, and some on right, actually my whole hand. the skin on both looks like an orange peel. I have exercise intolence, twitching-body wide, and crampy-ache feeling with no cramps. I have have some area's of thinning but clean emg's and a muclse biopsy that was bascially normal. Oh, and clinicals that are un-remarkable.
IT is so strange, isnt it?

I am keeping a level head about this as well and learned that nuero stuff is complicated.

well, gotto go and good luck! Just wanted to say I can relate

april
 
My symptoms in 1995 were bodywide twitching, muscle aching, perceived weakness, and a whole lot of anxiety to go along with it. The symptoms really waxed and waned over the last 13 years, however, I'm stuck in this rut and feeling like some type of progression is at work. I did have a clean EMG in September 2007 after this last "flare" started, so I would expect with the muscular changes and other issues that something would have presented itself by now. My family is full of autoimmune. My sister is Type I diabetic since age 10, my mom has hyperthyroidism, my aunt and sister are hypothyroid and then rheumatoid arthritis. I'm thinking of seeing an endocrinologist or rheumatologist to rule out some of the other family stuff. I'm lucky that my husband is a PT. My dad is also a massage therapist specializing in myfascial therapy. Can't get much better than that! At least I can say that I have a great team on my side! If you have any questions I can ask the PT, let me know. He has his doctorate with 15 years of experience. He has seen it all. Thanks so much for responding, it helps to know that others understand.

Stacy
 
You might have to wait and watch for a long time. ALS, if it is, comes on gradually. If you are thinking of the timeline of doom for ALS to take its toll, DON"T. This thought of 2-5 years is usually after years of symptoms. We don't usually go to a doctor with every little muscle spasm or twitch.

Some get diagnosed and have only a few months, but that's rare.

My Rick has been walking funny and holding his hands funny (feminine like) for years and years and years. He has had trouble walking on grass or uneven ground that long too.
He used to play tournament tennis and hasn't for years and years too, because he felt weak and couldn't keep his balance well enough. It took all these years to go for a diagnosed.

He was diagnosed a year and a half ago, and has had NO progression.

Try to relax and go with the flow. Listen to your specialists and enjoy your free physical therapy... but be careful not to pound those muscles too much. Not good for ALS patients.
 
stacy~

I would get to an endocrinologist and rheumy and let them know about your family history. Have you been to any of these before? Diabetes can cause what you speak of and so can thyroid. RA can feel like that if it attacks your muscle. I, myself need to get back to those two types of doctors and start over with these tests as well.

Marjorie~

I am so glad that Rick has has such a slow progression.

Take care~

april
 
Hello Stacy

I'm glad to see that Al came to your rescue. I actually tried to return the PM you sent to me but it wouldn't allow me to send it to you (I'm not at all sure how you were able to send me a PM). Anyway, welcome to the forum.

As far as your story: that sounds classic for some type of autoimmune condition, especially given your family history of autoimmune disease. It doesn't really sound like it's progressing per se but certainly it seems as if it's keeping you stagnant in regard to symptoms with the flare-ups you keep having.

A rheumatologist is the type of physician you would want to see. Have you had any type of treatment at all since the inception of your symptoms?

P.S. The clean EMG, given all of your symptoms and the length of time you have had those symptoms, is not at all indicative of ALS. You're on an ALS forum so I'm going to assume you had that as a concern.
 
Wright,

An autoimmune related condition has always been my biggest concern with my family history. Most members of my family have "something", whether it's RA, thyroid issues, diabetes, etc. ALS has been at the back of my mind, along with a miriad of other things. I have been told that this is not ALS. I am not a neuro and will never question their credibility. I have not received any treatment over the years, because up until two years ago, my symptoms would come and go (with the exception of the fasciculations). I have had two children during this time and my symptoms went away during pregnancy. Several years ago my symptoms were so minimal that I took up running and working out 5 days per week. This latest flare has been pretty bad. I have exercise intolerance for certain. Muscular aches and pains and my muscles look and feel different. My muscles fatigue easily, but this is more of a "burn out" feeling. It's not that I cannot do something, it just bothers me to do it. I do appreciate your reassurance and I hope you don't mind if I post back once I have been to the rheumatologist as I know that there are others on this forum who do not have answers. I do apologize if this is not the place for me. I'm just searching like everyone else for direction and really appreciate all of the responses.

Stacy
 
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