Cramps Fasiculation, worried about ALS - encouragement

[Mumphry]

In early 2015 I started experience cramps/tightness in both calves simultaneously (spasticity).
A month or so later I had the symptoms spread to my forearms.
I started getting numbness and tingling in these areas as well as my hands and feet.
After a couple more months I started getting tingling, like shivering or buzzing up my arms and shoulders and chest. It was worse at night. I would like awake thinking, "what's happening to me"?"

My arms, hands and legs, would get very tired very quickly. It was difficult to carry things.

I got an MRI to check for MS. It came back clean. I went for an EMG with an ALS specialist. It came back clean.
The intern said he hopes it it isn't something that turns out to be something else later on.

I requested an MRI with dye contrast to make sure it wasn't MS. While waiting for the results I got my first set of fasiculations in the affected muscles and also my face.

I went to a naturopath and told her about my muscle problems and my acid reflux. She gave me ginger to take.
The reflux went away and the muscle tightness improved so I stopped taking proton pump inhibitors for the first time in years.

My doctor called with the results of the MRI with dye contrast. No MS but, unrelated to the muscle issue, I had a tumour in my face.

The surgeon who removed the tumour said that I was very lucky because it hadn't spread and if I hadn't done the MRI for my muscles they never would have known it was there until it was too late.

2 years later I went on vacation and took proton pump inhibitors again for one week only. I walked about 20 km per day. My muscles started buzzing and fasiculating. I read about those cases of people who had an EMG but only received a DX after a second EMG, maybe when different muslces were tested? I went for a second EMG, now 3 years from onset of cramps/weakness/fasiculations. The EMG was clean. The neuro said now that it's been a 2.5 years since my first symptoms he was sure now that it's not ALS.

A year and half went by and I had another flare up of my acid reflux so I decided to take the proton pump inhibitors for a week. The tightness, fasiculations and buzzing came back but this time the tightness and weakness spread to my chest, upper back and stomach. My arms were weak and it was difficult to do everyday tasks. I found myself hunching over when eating. I started fumbling things, misjudging distances when using my hands and noticed weak fingers were the culprit.

I went for what I told myself would be my last EMG. The EMG came back clean - praise God! My neuro told me there are MANY people in society who experience cramps and fasiculations. I told him if there are they don't post on the internet, only the ones that fasiculate post, not the ones with cramps and they don't do follow up posts so it leads people to believe that cramps fasiculation syndrome doesn't exist.

He said CFS is real, many people get it. He said it includes feeling weak, numbness, tingling, itchiness (which I have in the affected muscles) and cramps. He said he has many patients with worse cramps than me and they don't have any disease.

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Hope this helped those of you who are suffering from Cramps and Fasiculations.

Its real, it's extreme and there is a large group of people in the population who have it.

 

[lgelb]

Thank you for the update. The finding of a tumor is a good example of why we advise people with significant physical deficits (like not being able to carry things) to see a physician, first and foremost.

Best,
Laurie