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Sabantoothtider

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I havevhad for the last couple months muscle cramping starting in my right calf and gradually turning into fasciculations all over w weakness in legs and arms. It seems to be worse at night but never goes away at all and is getting progressively worse. I have had severe migraines for over a decade.
I went to neurologist and she seemed somewhat uninterested until my neuro exam where I had 5-6 beats of ankle clonus in my left ankle and hypereflexia. She seemed concerned and I have had 3 mris which were negative and a spinal tap which was negative. When I returned for follow up the clonus in my left ankle was improved but was now in my right ankle. The cramping in my hands and feet is terrible and I can only explain my pain as being something I can't put my finger on where it is coming from but I hurt very much as strange as it sounds. The area around my sternum has become crazy sore and I haven't done anything to cause it ...my legs literally shake with weakness and I am terrified that my poor wife is gonna have to tke care of me. My doctor has no clue or at least she won't diagnose anything, everything I read brings me here. Please someone that is in the know, does this sound like Als?
 

ottawa girl

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I'd say no it doesn't sound like ALS. Typically, it starts in one limb or bulbar. You seem to have symptoms in all four limbs. But, it must be something! Your neuro sounds very thorough, and I can only imagine she would have ordered an EMG and nerve test, if she considered motor neuron disease. When do you go back for a follow up visit? You should absolutely continue searching for an answer. If you've read a lot of the posts here, you'll have noted a trend -it often takes a very long time for people to get diagnosed, and many wait years to get a "name" for their condition. If you want to put your mind at rest regarding ALS, why not call the neuro and ask if you can be referred to a rheumatologist and/or sent for an EMG.

I have learned that one has to advocate for oneself... Even at the risk of sounding like a hypochondriac, which I did not detect at all in your post!

I wish I could be more helpful!
 

vickim

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It could be anything still at this point. Have you had any blood work done? Or an emg? Don't worry until you have to. SOme people wait months even years to get a diag nosis. It took 5 years to get mine. I too had mris, blood work, cat scans. I had 3 ab normal emgs still no idea. It wasn't until I had a mus cle biop spy that I got my answers.

I would say to keep up with the dr appts. And in the mean time try not to worry to much, anx iety will cause your symp toms to be worse. Keep a journal of your symp toms, when they start, what you are doing, how long they last and where on your body they are. This will give a time line and make it easier to answer questions. Take notes when at the dr too.

This forum is a wealth of information and the people here are wonderful. Others will chime in with advice too.
 

Debd4l

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Hi,

Because of the sternum pain they may want to check for fibromyalgia or even sarcoidoses maybe..Best to you.
 

Barbie

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Lost a loved one
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When you go online with your symptoms, it does tend to point here but that is really not to be taken seriously. some are related to als, but not all of them, and even the related symptoms like are also related to many other illnesses or disease!

REmember, ALS is a rare disease. it does not get better no way no how, so your clonus would not have gotten better or moved to the other ankle. and the sternum pain--definitely have never heard of anything like that in ALS. Migraines too, no ALS.

If your doctor suspected a serious disease like ALS, she would definitely send you for more testing--not keep it from you. best thing you can do is try to relax and stay off the internet--it will drive you crazy with worry. try to focus on something else other than your health for a month, then go back to your GP if you must. But definitley definitely do not Consult doc G o o g l e.
 

notme

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Hi

At this point, what tests have been done or scheduled? Clonus isn't normal...but it does NOT mean you have ALS. Spinal stenosis can cause much of what you describe in your first post.

Have cervical and spine MRIs been done? With your symptoms, I'd be freaking out a little, too, and searching for answers. But, without knowing what tests have been done, and things like that, we are very limited as to what to say other than 'see your doctor'. Does it sound like ALS.? Not to me...but it should warrant more investigation by your doctors. See a neuromuscular specialist if that would help reassure you. As said, dr. G isn't very good.
 

HelenL

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I agree that though some of the symptoms sound like ALS, altogether it doesn't seem to be. Have you had any blood work done for Lyme disease? If not I would suggest getting the Western blot test done to see if that would be a possibility. It can imitate many of the symptoms of ALS, and my daughter actually did get Lyme disease when she was three years old. Good luck, keep advocating for yourself, and remain optimistic that a better answer will be found!
 
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