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notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
HI

I'm a 50yo woman. I have a medical hx of high blood pressure and multiple issues with prior blood clots, and now take blood thinners.

About a year ago, I started to notice pronounced weakness in my left hand (my dominant hand) Over the course of the next several months, it's progressively gotten worse and is now spreading to the right hand as well. I drive a Ford--with the door buttons that you push to lock and unlock the car. The first thing I noticed was my finger literally collapsed when I tried to push it. Within a short time, the muscle in my hand between my thumb and forefinger has almost completely wasted away. My GP is at a total loss -- and was last year. They put me in the hospital when the weakness began to rule out a stroke. MRI was unremarkable. They released me within a few days. The MRI shows some disc damage--but they said it isn't causing this.

It was only two weeks ago that I finally got approved to see a neurologist. I go in next week.

The muscle atrophy and weakness is getting much worse. What started basically in a finger has progressed throughout the entire hand. I'm dropping things. My writing is nearly illegible now as I can't hold the pen. Buttoning buttons is out now as well.

I was thinking it was likely a pinched nerve somewhere, but my doctor doesn't think so because the MRI was normal. Now it's spreading to my right hand as well.

I'm getting horrific leg cramps in both legs--but I do have a ruptured disc in my lower back.

I'm having a lot of problems with falling. My legs just give out and I'm down.

My arms, though, worry me the most. My hand is nearly useless. It twitches constantly--then cramps.

I'd like to know what intelligent questions to ask the Neuro when I see him next week.

I know ALS can cause atrophy and progressive weakness--but does it also cause numbness? I seem to recall that the numbness in my fingers last year proceeded the weakness and eventual muscle atrophy. Now that it's moving to the right side as well, I'm sort of freaked out.

I'm also choking a lot--on drinks of all things. Foods seem to be fine.

I know just enough about medical conditions to scare myself. Honestly, I've been afraid to go see a neurologist--but when the symptoms moved to the right arm, I just couldn't ignore it anymore. The right arm didn't start having problems until about a month ago. About the same time I started falling. The horrendous leg cramps started about 3 months ago.

I'm hoping someone here with more knowledge than me can give me some idea as to:

1. What this could be
2. What to ask the neurologist
3. Is numbness even a sign of ALS
4. Are muscle cramps a sign of ALS

Thanks in advance for any suggestions
 
Forgot to mention: I do have diabetes and peripheral neuropathy--so that might account for some of the numbness?
 
I'm hoping someone here with more knowledge than me can give me some idea as to:

1. What this could be
2. What to ask the neurologist
3. Is numbness even a sign of ALS
4. Are muscle cramps a sign of ALS

Thanks in advance for any suggestions

1) None of us here are doctors, so we cannot diagnose you. It is probably wise for you to wait until you are at the neurologist's office and direct this question and others like it to the neuro. After all, it's what you are paying him for.

2) First, be sure that you tell the entire story you've told us here. It might be wise for you to print or otherwise make a copy of what you wrote here so that you don't forget anything. After the neuro has completed his examination and decided what further measures he wants to pursue with you, ask him why he is doing what he is doing and what results he is expecting to see.

3) No, numbness is not usually associated with ALS.

4) Yes, muscle cramps can be an early symptom of ALS. They can also be caused by many other things -- the overwhelming majority of which are easily treatable.

Good luck with your neurologist next week. I hope you get good news.
 
Thsnks. As numbness was the first thing I noticed in my left hand--though the numbness was the pinkie and ring finger, not the one that died first--I'm less worried.

I've actually been trying to ignore all the symptoms. I've gone to a doctor exactly twice in the last year other than for my blood checks for the clots. I'm honestly hoping the doctor is wrong and that the problem is somehow being caused by my neck.

It's just frustrating to have a hand that is basically useless and the cramps in my hands and legs that are making sleep difficult

Appreciate it.
 
Good luck with your appointment. He will likely do EMG, nerve conduction testing, lumbar puncture, and possibly blood work looking for autoimmune diseases that could cause your symptoms. My husband has CIDP and has atrophy of rt. hand and forearm, and foot drop in the rt. foot. He has episodes of excessive saliva and a little choking, cramping in hand and legs. It is hard to say what is going on with you--could be so many things such as carpal tunnel and since you are diabetic you could have peripheral neuropathy that is just getting worse. Let us know what you find out and I'll be keeping my fingers crossed for you.
Laurel
 
HI

Just home from neurosurgeon. He has completely ruled out the possibility that the problems I'm having being due to my neck. He said there is pronounced weakness in the left hand (duh, I knew that) The muscle wasting has spread to the right side (I thought it was just normal indention on the pinkie side--he said no--it's atrophy.

So, after an entire afternoon....all I know for sure is that I have some "neurological disease". He's now trying to get my insurance to approve the EMG/NCV studies he wants done on both arms.

I told him about the leg cramping and the falling.

I asked if there was any chance of the use of my arm coming back--he said no :( I have a very bad feeling. Very bad.

I own my own school teaching nursing assisting and I write novels. How the hell can I teach and write when my hands are dying on me? I was really trying to think positively--but "neurological disease" scared me to death.

I was really hoping it was coming from my neck and lumbar spine.
 
That does sound worrisome, but keep the faith. There are neurological diseases other than ALS. Like I said, my husband has CIDP with wasting and atrophy, but it is treatable. Hopefully he will test all four limbs. Keep us posted please. And good luck!
Laurel
 
It's hard but just hang in there. As laurel said there are many conditions that cause atrophy besides ALS, as for your writing, there are many people on this forum that continue to write using all the wonderful technology that is now available. I am sure you could still write novels. Hope they are good ones :)
 
Well, it's taken me a year to get approved to see the Neuro. Hopefully, they will approve the new neuro faster. Now, if I could just find out a cure for the never-ending spasms, the exhaustion, the dropping things and losing my balance and falling---add to that, I have other health issues--one of which causes pain pretty much 24/7.

Anyone know what helps with spasms and severe cramps? I've got valium--but have only been taking it when absolutely necessary as I've found meds don't work as well when we take them all the time (like my pain meds)

Thanks for any suggestions! Can anyone also tell me what ELSE this could be? Believe me, I'm all for a different diagnosed--but I'll admit, I'm not optimistic right now.

Doc did tell me to keep using the walker so I don't fall. I know pain isn't part of ALS--but is total lack of energy?
 
Some people on this forum take valium for the cramps with some success. maybe you should talk to your Doctor about a regimen where you take a certain dose at a regular interval to keep on top of the cramps. If it is being caused bt UMN issues then things like Baclofen can be of help, again maybe talk to your doctor about what he can offer in the way of supportive treatment while you await diagnosis.

As Laurel mentioned her husband had atrophy etc with Chronic inflammatory demyelinating polyneuropathy. Instead of speculating about other disorders and maybe heaping misinformation on your table, it may be better to just hang out and discuss things with the neurologist. I hope you are not kept waiting too long. Hopefully your neurosurgeon can fast track your wait due to his concerns.

Best wishes
aly
 
Neurosurgeon just called. Their hospital won't take my insurance--and it's taken me a year to get that referral.

Sigh
 
Oh dear, I really do not understand the American system at all, seems bizarre! Can people just take themselves off to a dr and see them in private? What's the point in insurance if you can't go see a dr when you need one!
Aly
 
Aaaah, Welcome to our world, Aly. I; for one, know quite well the "fall through the cracks" scenario! Try getting the dr's. nurse on the phone.....I have waited 2 days for a response on my referral. And often times; after paying the outrageous premiums, deductibles, and out of pocket expenses, the insurance company will say they won't cover "blank". I recently received a statement from my insurance company for an MRI of the breast that I had done 3 years ago.
 
I don't know what to do at this point. My pain doc thought it was from my neck--but then, she has never done more than 'look' at my hand and arm.

My GP just said "You need to see a neurologist"

My OLD GP put me in the hospital immediately--they thought I'd had a stroke again from my blood clots. Hospital did a neck MRI and released me a few days later.

And they wonder why I haven't been to a doctor but once in a year. I get blown off.

Now--after over a year of this BS, I'm to the point that I'm almost non-functional. I can literally barely get up the stairs to my apartment.

I can type--but I can't push the top of my hair spray can.

GP says my blood work is all normal other than Vit. D levels--and to see him again in 3 months.

I'm already on disability due to spinal problems--but the neuro surgeon looked at my MRIs both lumbar and cervical and says there is absolutely no way that my problems are being caused by my neck or back.

Can anyone tell me what conditions I should be looking at? I looked up CIDP--but the most severe problems are in my arms, not in my lower limbs.

I keep hanging on to what someone posted about numbness not being a sign of ALS--and that was definitely the first thing I noticed in both arms--but also high levels of pain--which again doesn't seem to be an ALS symptom, correct?

The problem now is I don't know what is related to my bad discs (pain wise) and what is related to whatever is causing the atrophy.

I called my doctor office after I talked to the neuro office. They are going to try to get a neuro referral approved.

I don't personally have the money to pay for any of this. For the last month, I have not been able to do anything at all.

I will admit I'm freaking out right now. I need, according to the neurosurgeoin, an NCV and EMG. He wrote the script for both--but the doctor he referred me to won't take my insurance. Neurologists are NOT cheap.

ALS pretty much has no treatments as I understand it--but aren't there other neurological diseases that might have some sort of treatments?

The only thing I know for sure right now is that I need to get some life insurance before I get ANY diagnosis. Is that morbid or what?
 
Dear Notme, Good Luck on the Life Insurance! My husband is a high school teacher and has life insurance through the state. Well, somehow they were able to access my medical and find I was being tested for a MND and was denied coverage. We have tried other companies and still got the same response.
 
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