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sdsyd

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Hi there. I've been a member here since April and have been regular reader. For some unknown reason I could never post new threads or messages, I finally ended up creating a new profile and it works just dandy! HOORAY! Thanks Capt Al for your suggestions. Anyhow, I've seen the courage and support you have for one another and don't know yet that this is where I "belong" Here's s little bit about whats goin on with me for anyone interested- and feedback is very appreciated- AND wanted! LOL

I am a 35 y.o happily married female with 3 kids. Sometime last year I noticed I have been tripping over my left foot. I ignored that and chalked it up to clumsiness or being in a hurry. However, about Sept. I began experiencing a fasciculation in between my left thumb and forefinger. I ignored it. It began to get more forceful and actually moves my thumb now. It is nearly constant. I wasn't too concerned until it began to acually be pulling my thumb inward and affecting the use of my hand. ( I know understand it is weakness and minor atrophy) A couple of months later a friend noticed I sounded different on the phone- my voice was lighter and sort of hoarse. I also have some difficulty swallowing since about Feb.

Round one- to the GP- MRI- negative (whew! No brain tumor, aneurysm or stroke that they mentioned as possibilities)

Round two neuro- MRI contrast dye 16 tubes of blood, Sleep deprived EEG- all negative. Platelets may be a little high, RBC's a little larger than the average persons, but nothing to worry about. No answer from neuro. He said he thought it was related somehow to my central nervous system, but needed time to figure it all out and see what happens with my progression. Have follow up in July.

Round three- back to gp for increased problems swallowing. I have a swallow study tomorrow afternoon, but my problems are much worse at night. GP has absolutely NO offerings as to what might be causing all of this. or interest in treating my thumb.

Functionally my only problems are: my deformed looking thumb making it difficult to open packages, do my daughters hair, type, and can no longer play guitar . etc. More careful when I walk and chew my food more, and am AWARE when I swallow. Note to self: NEver attempt to guzzle water, it is dangerous. Never eat more than two dinner rolls no matter how fresh- this too is dangerous as your swallow muscles were tired after the first one! I am doing less around the house but wouldnt call it undue fatigue. I have other twitches around my face ( sometimes I feel the "tics" when I put my teeth together- almost like they are slightly chattering) Also at night I notice shudders in
my shoulder, thighs and bottom of one of my feet " shudder". I also have marked decrease facial expression and somone recently commented that I have the Mona Lisa thing going on. Foot cramps.

I haven't shared this with many people because I don't like people knowing I am sick, Plus they are all really weird symptoms I hope will go away, so I don't want to scare people and have them worried. My husband and my 2 sisters know and are supportive.

SORRY this is so long but I've been trying to post since April.:-D

THANK YOU so much for letting me get this out of my head and into cyberspace!
Any ideas?
~Cindy
 

sdsyd

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p.s. the Dr. and neuro both noted hyper relfexes.
 

happy

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Welcome, Cindy. I have no idea about your symptoms..it sounds really frustrating though. I know you will find great support here. You sound like you have a great attitude..I hope you get your answers soon.
Robin
 

hopingforcure

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Hi Happy..
Please dont get yourself overly upset about any of this stuff yet, a lot on your plate to remove before ALS even becomes a thought. An EMG and nerve conduction test, would probably be next. And a good clinical exam from a neruo who is more specialized. Als is always a possibility for anyone, but is on the bottom of a list of a lot of other things. You should be tested for RA, Lupus, Thyroid, Lymes, MS, and the list goes on.. Vitamin deficinies, metabolic problems, myopathies. Dont worry yet, we are all here worrying about everything on this board, plenty of worry to spare, how bout I worry for you, I got more than enough to share with all. You are in the correct place.. Great brave people here.. Hoping
 

sdsyd

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Thanks happy and hoping. I definately have't diagnosed myslef with this terrible disease, but it is always in the back of your mind. The neuro did do a pretty thorough check, and He said it didn't look like MS due to no white lesions on MRI and some other reasons ( cant remember he had so much info) they did several tests for RA and checked my thyroid. I need to get a copy of what he tested me for, but said everything was in near normal range.

My husband says they wont see whatver it is until it's staring them in the face. From my understanding many Central nervous disorders are hard to diagnos. SO, amd not too freaked out. But am glad to have a plce to come right now. THanks for welcomming me aboard. Just another thing for me to get through- doesn't seem to be a way around it anyhow. LOL
Take care and You've been in my prayers since I first came to this board.
 
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