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bsonrisa

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This thread is not about asking whether I have ALS. After this past week, I've started to accept that I probably do. But I'm looking for emotional support going forward.

My symptoms started in April with unexplained muscle soreness in my right bicep and thumb. I saw a neurologist: no weakness, clean EMG. In late July I started getting intermittent muscle cramps in my right lower abdomen, that have spread to the same muscle on the left side in the past couple of weeks. I've been to multiple doctors who have ruled out gynecological and GI causes for this. I started getting some cramps in my right thumb too.

I went back to the neurologist last week and had another EMG. They found chronic neurogenic changes in my right thenar area. The same place where it was sore! Still no weakness. Finally I saw a neuromuscular specialist this past Friday. He had vague explanations for everything. The EMG abnormality was minor enough, he said, that it might just be "normal for me". (I didn't have any numbness, tingling or radiating pain that would indicate a spinal issue.) He said the muscle cramps are just muscular and gave me stretching exercises. But I know my body too well to accept this. I'm a runner and I've had lots of cramps. These feel unlike anything I've ever felt. A sharp twinge of pain every few minutes for hours on end.

I asked the neuromuscular specialist about ALS. He didn't think it was a possibility because I've "already been studied so much". (I saw a neurologist in his practice 2 years ago for benign fasciculations.) My parents and husband believe him without question. I wish I hadn't done so much research about ALS, but I have, so I am fairly confident that I have it. So I feel very alone - possibly facing a terminal illness without anyone else believing that I have it.

Have any of you gone through this? Can you provide some advice on how to get through this time until I get a definite diagnosis? I know that the right thing to do is live every day to the fullest while I still have all my physical capabilities. But it's hard because I'm feeling very depressed and alone.
 
Chronic neurogenic changes? Very commonly reported here. These people do not seem to return with an ALS diagnosis. I can't remember that ever happening.

None of us can predict the future but the neuromuscular specialist evaluated you and did not seem concerned. Believe me, when they suspect something they don't tell you you are fine.

Do you have follow up booked? Or were you discharged?

It is hard to advise you as if you are en route to an ALS diagnosis because it does not sound like it. No matter what is or is not going on though stress management,yoga , meditation, good diet, good sleep and taking time to enjoy the important things are all desirable
 
Oh, youbetcha! We see this all the time.

People who've been cleared by a Neuro but decide that they still have ALS.
People who mistakenly think ANY EMG abnormality means ALS.

It's called hypochondria or Health Anxiety.

I'd suggest that you bring this up with your PCP, and go peruse the Health Anxiety forums.

We know ALS. We do NOT know Health Anxiety, nor do we have time to support those who have it.

Good luck! And Good Bye!! :)
 
Hello,

I'm going to be firm, but empathetic here. So, you've had a neuromuscular specialist say you do not have ALS, yet you think you know more than their 15 years of post secondary education to think otherwise? Seriously? !

You ask if one has ever thought they had it when docs thought they didn't? Nope, not in a million years did we think my hub's had ALS. It was the last thing we'd have ever thought, yet 3 neuromuscular specialists said he did. My husband's walking just got worse and worse and now he walks with a cane and brace; we had to accept that he did. Also, he has little to no cramps.


Listen, Smile, be thankful you're limbs or bulbar region are not failing and you have been cleared of ALS. You're not going to get that definite diagnosis of ALS you so seek.

Go on and have a fruitful life. Take care.
 
I'm sorry for taking your time. You're right, I have been diagnosed with health anxiety, and I do see a psychologist.

I was asked to follow up with the neuromuscular specialist in 3 months. I asked to come earlier, and he agreed to see me in a month.

I hate to be argumentative, but my situation reminds me a lot of forum member blueandgold - that is, physerv on the AboutBFS forums. He went to the Cleveland Clinic neuromuscular center. According to his AboutBFS post, he also had chronic neurogenic changes and was told they weren't ALS. He was dismissed and told to do stretching for his cramps and manage his anxiety.

I may not have been told "this might be ALS", but I'm going through the same emotional ups and downs as if I had. Wanting to sleep all day so I can forget about this disease. Finding it intolerable to be around people except my husband and close friends. Especially parents with children - my husband and I were about to start a family but it would be too dangerous with ALS.
 
You're going through the same emotional ups and downs as someone with ALS? Man, that's a self centered statement.

Go get help for your health anxiety and learn to be present for your husband and parents.
 
Discuss it with your psychologist, excellent!

Please come back if your follow up shows anything.

But do NOT linger here asking for emotional support. We've more than enough work tending to actual ALS patients.

Good luck!
 
Did you have reduced recruitment too? Vince did I know and I believe he was never able to get the physical report to see if there were other findings too though perhaps I am wrong. But the findings he reported were not just chronic neurogenic

How to handle your feelings ? Please discuss with your psychologist
 
I know you guys have your hands full caring for people with ALS. Thank you for taking all the time you do to answer questions on this forum.

No, I didn't have reduced recruitment.

A few more questions, if you don't mind: Have you ever heard of someone getting an EMG result and being told it's abnormal but "normal for them"? The neuromuscular specialist sort of dodged the question when I asked him if it was common.

Have you ever heard of the type of cramps that I'm getting, in someone either with or without ALS? These aren't Charlie horse type cramps. It's a single sharp pain that lasts a split second. I'm getting them in my pelvis, near the bikini area.
 
There are specific " abnormalities" that indicate ALS. Other abnormalities come from many causes, including pinched nerves.

I have limb onset ALS, and my first symptoms were LEG (=limb) cramps. And they weren't "split second", not by a long shot.
 
"Other abnormalities come from many causes, including pinched nerves." I was ruled out for a pinched nerve because I didn't have any numbness, tingling, or radiating pain.
 
Which part of " we don't support Health Anxiety" was unclear?

I gave you an inch as I thought it appropriate, but I think you've hit your quota.

Plz discuss ANYTHING else with your doctors.

Bye and good luck ( elsewhere!)
 
Everything that everyone else said, PLUS I myself ( me, not an ancedote) am one of the few people in this world who have carpel tunnel and tendinitis, recurring so badly in my wrists that my right hand/ arm showed chronic neuro changes on both EMGs they did in those areas to help confirm the Dx. I have an official chart note that I may never in my lifetime show entirely normal anything in that right hand/ arm on testing. My Nerve conduction test was so messed up the Doctor was surprised I had all basic use of my hand.

My point is abnormal test results show up in neuro exams for many, many reasons and ALS is the very least of them.

Maybe the Doctors are saying no ALS because you just plain don't have it. In fact, they seem to think it is obvious you don't so I suggest you believe them.
 
Thank you, but carpal tunnel was ruled out and the NCV was completely normal. They could think of no reason for my abnormal EMG except "likely normal for you".

I guess I'll have to see what happens at my follow up.
 
While waiting for your follow up, may I suggest the following:
1) stay off google
2) stay hydrated, and stretch
3) do something to help another
Keep talking to your psychologist. Anxiety can be disabling.

Angie
 
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