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the_ide

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Hi I am 26 T4 parapaligic female. I am extremely worried I have ALS but I cant see a nurologist for a month due to insurance. As I said I am a T4 Parapaligic and have been in a wheelchair my whole life. Last September 2010 I started thinkingmy legs looked smaller almost atrophyed from my feet to below my knee but I was trying to lose weight and my disability so I didnt think too much my husband said my butt was also getting smaller I must mention usually my feet and legs are purple and swollen with my disability most my friends legs atrophyed due to their disability when they were much younger but now they are no longer swollen and to me look smaller but no way to tell I recently started measuring to check...in October the 16th I recieved a Depo shot and my flu mist and 2 weeks later I was feeling shortness of breath and chest pains I went to the ER 4 times no pulmenary emboli then I was admitted for constipation 1 night at the end of November all my vitals were good i had a heart monitor on they seemed normal because no one got concerned. I went to my PCM and mentioned I had a weakness feeling in my arms he tested my strength and said my strength seemed fine.the weakness went away for awhile then 2 weeks ago my pain in my chest lessened but I developed a raspy vry dry cough I can only cough when i fill my lungs like im going to hold my breath. my shortness of breath is minimal my dr rx gulsaisan I finished it but still have the cough then a week ago I started having extreme fatuige in my upper arms and back of my neck upper back mainly shoulder blades and between them if I leave my neck straight for too long it feels as though the back of my neck twitches and is weak. the next day I had twitching in both my arms mainly noticible at rest or sleeping. then 2 more days and twitching in my face mainly lips cheeks and eyes then another 2 days and now im having problems swallowing as well feels like a lump in my throat clear liquids seem ok but food is hard. all my twitching in the face has increased with my forehead twitching and increased lip and mouth twitching. My tounge moves fine I can roll it and move it back and forth fine i dont think my tounge is twitching but twitching in my arms have stayed the same mild and my sore muscles are still sore my neck think is only on the back of my neck. I can still dress and brush my hair fine although ties my muscles a bit and I can open jars I can also still transfure from floor to chair using my arms. Please HELP I am so scared my Dr said he wasnt sure what it is but wanted me to see a nurologist because it could be ALS his exact words however he wasnt sure how they could test with my spinal cord injury at the t4 level and I cant tell what my legs feel like...does this really sound like ALS and will tests be inconclusive due to my disability? Thank you in advance for any help
 
sweetheart..you sound like a great kid...the als gang will be in to help..in the meantime, godbless, juhnny
 
Thank you Johnny! I try to be reasonible about things but this really scares me and my dr saying ALS spacfically is even worse all I know is that with the quickeness the upper body sympotoms seem to be progressing it scares me I didnt even know it was possible to progress this fast however it could be a long time since onset since I cant feel my legs. Do you think it is possible even if my legs did show signs that the upper part would progress this fast?
 
I dont think its fair that your Dr has even mentioned ALS without proof. Not fair at all. There are a huge number of neurological conditions that coulsd be causing your weakness etc. It could be a nasty post viral condition, or something else. The neurologist will be able to help.
No ALS does not happen really suddenly but other conditions like Guillian Barre can. Just hang in there till a Knowledgeble Dr can help. Disregard the comments of the "quack" that told you about ALS.
Maybe your limbs look more atrophied because the swelling that you have had has gone down, for some unrelated reason? With your spinal cord injury and therefore atrophy, your muscles will already be in a similar state to someone with advanced ALS It seems doubtfull that they could suddenly lose more muscle than they already have. It would be more of a worry if you noticed increasing atrophy in your hands or upper limbs, which will be strong doing all the work.
As to testing for ALS, you could still have an EMG on your upper limbs to help in the diagnostic process.

hang in there. Will be thinking of you
Aly
 
A few months ago I experienced foot drop that quickly spread to weakness in my legs and then progressed up my body and I began experiencing trouble breathing etc. I too was afraid it may be ALS. By the time the doctors actually diagnosed GBS, I was already feeling better. Please don't jump to the ALS diagnosis, there are so many other things that can cause the symptoms you are experiencing. My thoughts are with you and PLEASE don't panic it only makes it worse.
 
Justan update today I went to the dr my temp was 97.3 and blood pressure was 122/83 my ft ARM is really weak and shaky my left doesn't feel bad or sore or weak but is shaky my back feels ok I am having tremors in both arms my lips are twitching angle I think I have increase saliva but unsure I seem to be ok swallowing stuff however slowly my tounge feels big and I'm clenching my teeth involuntarily...I can still transfer from floor to chair and from chair to car although shaking and takes a lot out of me the top of my shoulder feels stiff...notably although gross and I'm sorry but I've had a stomach ache with any food last 2days and now very loose stool...it maybe connected it may not I just feel better telling you and getting responses. I am having an endoscopy and colonoscopy tomorrow dr wants to check for the swallowing issue... ill let you all know ...thank-you for listening and I'm hoping my dr is just jumping the gun on Als crossing my fingers
 
You are going through a lot. Best of luck with the tests. It could all be connected somehow. Don't worry about Grossing anyone out, and I am here to listen if it helps. It just may be an awful Viral thing, We aren't Doctors so we can only give our support and ideas.
Hope it all becomes clear soon
Aly
 
Thank-you ali I know your not doctors but just having people who know what my fears are.and having someone to give advice and ideas on what it maybe helps a lot for me especially since I didn't even know what ALS was until my doctor said I'm sending you to nurologist because all your bloodwork is clear I have no idea, but it could be ALS.

I searched ALS which scared me even more since he didn't tell me what it was. Finding this site and the people here are a big help. I'm still worried but at least I have good people who know what I'm going through and are willing to listen and make suggestions. It helps a lot.

All I know about ALS is what I've searched and so of course in my mind I have all the symptoms although I have never heard it progressing so fast.

My legs started in August and not all at once, but in a few days, so I am hopeful and worried at the same time.

Thank-you
 
Update ok had the endoscopy and colonoscopy nothing of note and nothing blocking my swallowing...I'm still clenching my teeth but tounge reflex seems normal to me my left shoulder blade sore down to right elbow very minimal twitching so far however was given valium for the procedure and phentinol which I'm not sure if it effects it at all my tounge feels huge but only in my throat been cold a lot lately and wake up a lot unknown reasons. But that's my promised update gi dr said he is putting in a consult for a swallow test although he didn't detect a problem.
 
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