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MommyRissa

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Hey all,

I've been here before, about eight months ago, and you were all very kind and helpful. I couldn't have asked for better advice or reassurance so here I am again seeking the same thing. I know how precious your time is and I appreciate it. I have checked in on everyone from time to time. I never had the guts to post anything after saying my goodbyes. It felt wrong and disrespectful, seeing as I have been told that I did not have ALS and that I needed to move on with my life. And I tried, I really did. I even had a couple months where everything seemed to improve astronomically and then I don't know what happened. Everything has been in landslide mode and I don't know if I can keep it together anymore.

Here's what's happening: I have constant chronic pain in my right arm from my neck all the way down to my hand. This is supposedly my Carpal Tunnel hand, but absolutely nothing has been done to fix this problem or even alleviate any pain. My hand has started to 'lock up'. It's more like a cramp where it becomes very painful for me to use my fingers. My forearm is tight, like the muscle is in one long cramp. I have not lost any strength that I'm aware of but the pain is really starting to wear me down mentally and physically. My thumb is throbbing right now, along with my wrist and elbow, every time I hit the spacebar. My twitches never stopped, never got better. They just moved to the right side of my body and mainly my arm, which, of course, freaks me out. I have the same stuff starting in my right leg. Cramps, spasms, stiffness. At this point I just want someone to tell me what's wrong. I've pretty much given up everything because of pain. It hurts to do anything even though I can still do everything, for which I'm grateful. But because it hurts I don't want to do it. I am tired all of the time. It's not a feeling, I am exhausted. Getting up requires way more effort than it should or ever did. Sleep is not refreshing. I can't remember the last time I woke up feeling invigorated. I don't even know what that is. Any task requiring exertion just about pushes me over the edge. I'm instantly hot and sweaty and grouchy and tired and winded. I am dizzy. I stumble around like the earth shaking right underneath me and bump into walls, chairs, cars, doors. I have little electrical zaps all over my body, randomly, I can't think of anything I do to trigger them. They just happen and they hurt and then they go away. That's pretty much all of it, oh and the headaches.

Now, I've been to the doctor, about a hundred times. I have not been back to the neuro because of the hand surgeon referral debacle (not worth explaining). I have detailed all of my complaints to him multiple times and so far all he wants to do is an x-ray of my right shoulder. He still isn't worried but I am. I have suffered a nervous breakdown because of this crap. I've literally lost everything because of fear. I'm trying to get back on track, but this pain is not normal and it never stops. It makes even fun things feel like chores. So when I start work next weekend, I can't even imagine how hard it will be.

You guys know so much. Your knowledge and experience is invaluable. I have so much respect and admiration for you all, but I really just want this to stop now. If I'm being taught some lesson, okay I get it. I don't want to lose my life. I gave up living and I just want it back. I've figured out that I can't ever do anything about the twitching. I don't know what to do about the pain, yet. But the combination of the two, in my mind, really makes me nervous. So what do you guys think? Do you have any ideas at all about what's going on with me? I'm keeping up with my doctor, taking all his meds, and following all of his orders, but he isn't helping me and the drugs just make it all seem worse. I'm 24 and on the same meds as my eighty year old grandpa... Something about that isn't right. Please, any advice is appreciated, and thank you.
 
Have you been tested for Lyme? I too lurked here for months, but was told by three neuros that it was not ALS and finally allowed myself to move on. I creep on the site though, because so many people are in my prayers here. Anyway, your story is identical to mine. I've been getting treatment for lyme since December and although I'm certain I will never feel great again, I do feel much better than I did a few months ago. Lyme is political and a lot of people want to debate its existence, which I allowed myself to play into for awhile, but I stopped taking my antibiotic about a month ago and every horrid symptom came screaming back. I have no doubts now. It's hotly contested though. Beware!

(((Hugs)))
 
Your symptoms still don't sound like ALS, but I'm sorry to hear that they have been so bad. I hate to sound cliche, but at this point I think you really need to a find a doctor that cares at least a little that you are in debilitating pain!
 
It doesn't look like ALS to me either.
It looks to me like it might be something else.

By the way, try to find another Doctor who has better bed side manners.

I hope you can get all this situation sorted out soon.

Good luck.

NH
 
Maybe fibromyalgia? Sometimes it takes finding a dr who will really listen. Keep a journal that chronicles your problems, dates, times, what you were doing and how long it lasts. Don't go into the dr giving your opinion of what you think it is. Don't go in and tell them you have been doing searches on the computer. Be a blank page, describe what and how you feel.

If they suggests tests go with it, don't say this dr said that. It ok to tell them you have been to other drs but don't volunteer any info unless asked. I hope you find your answers, I have been in your shoes and walked miles in them. Be patient, try to relax even though it is hard. Remember this is a journey not a race, some of us have taken years to get answers, some months and some are still waiting. Be steadfast, strong and you will get answers. I wish you peace and good luck.
 
So far I've been diagnosed with Fibro, Carpal Tunnel, and BFS. I had one of the medical staff at the doctor's office suggest MS. I prefer nothing if possible. I'm so desperate I've even considered taking the antibiotics that started all this. I haven't been tested for Lyme yet though. Nighthawk it sounds like you might have an idea. Thanks you guys!
 
Your symptoms sound a lot like mine except I have it in both arms. I would not be thinking ALS if I were you since you had an EMG which didn't show it. I have the horrible pain in my arms and twitches all over. I will have an EMG and MRI soon. Still...I am fairly certain it is not ALS.
My symptoms are bilateral and include a lot of pain which I have read is not indicative of ALS. And really...ALS is so rare.
It would be interesting to know how many people here actually have ALS as opposed to those of us who are trying to rule it out.

The real problem is...it IS something and it is debilitating.
I would go back to the doctor with a specific list of questions (something I haven't done myself yet but wish I would have).
Do you have back problems?
Could Fibro cause all your symptoms?
 
Can carpal tunnel mimic ALS and MS?
 
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