Old 01-14-2017, 10:18 PM #1 (permalink)
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Default Concerned, lots of symptoms.

Hi everyone,

I'm new to these forums and I just wanted to find a place I could talk to some people and maybe get some clarification and talk to someone with similar issues. I actually don't think it is ALS specifically, but I have not really been able to find anywhere/anyone to talk to about what has been happening.

I have been seeing a (2nd) neurologist recently for some issues that have been getting progressively worse over the past couple years. My next appointment is a month from now for a 2nd EMG. I had one before when the symptoms very first started and it was mostly just the calf fasciculations, but the neurologist I was going to at that time was far from helpful (long story).

Basically it all started out with me noticing fasciculations in my calves and then slowly noticing more and more things. I'll list symptoms that have been happening below. These things have been slowly happening and getting progressively worse.

- Fasciculations in lower/upper legs, feet, abdomen, and most recently arms. Started in calves and progressed from there.
- Clumsiness and occasionally losing my balance, or running into doorways.
- Muscle cramping or slowly relaxing after being flexed.
- Limbs randomly and sometimes violently jerking in my sleep.
- Legs sometimes get weak and shaky from what I would not consider very strenuous activity.
- Can't lift weights anymore without getting debilitatingly sore.
- Extreme chronic fatigue.

I also have some other random things that I don't know if they are necessarily related, like my feet never getting warm and having trouble with short term memory.

Basically just extremely worried and as of yet have not really gotten any answers about anything, doctors are very vague for the most part and hesitant to even give me any of the possibilities. Hoping someone has had similar issues or knows what kind of possibilities could lay ahead of me. This has been affecting my job and quality of life quite a bit recently and the fatigue is starting to take a mental toll.

EDIT: I think it may be important to mention that I am a cancer survivor and have had chemotherapy and radiation in the past. Don't know if that is of significance. I am 29 years old.
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Old 01-15-2017, 04:32 AM #2 (permalink)
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Default Re: Concerned, lots of symptoms.

Hi, Ohio,

Radiotherapy and/or chemo are the most obvious potential cause of your symptoms, as after-effects can manifest years later. I suspect the 2nd EMG will be as clean as the first. However, since you say your symptoms are progressing, that should at least rule out some of the possibilities.

I don't think you're in the right place here, as you acknowledge, and I'm not sure neurology is the service for you. I'd go to a good internist who can work you up from scratch, maybe even your med onc. What you describe seems more systemic than neurologic.

Best,
Laurie
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Old 01-15-2017, 07:31 AM #3 (permalink)
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Default Re: Concerned, lots of symptoms.

Quote:
Originally Posted by lgelb View Post
I suspect the 2nd EMG will be as clean as the first.
The first EMG actually showed some signs of muscle atrophy. Sorry, I should have mentioned that. I never got any real info from the first neurologist, his bedside manner was horrible and his office staff were even worse. He ran a bunch of tests and I got all the bills from it with no answers.

I had a bill from one appointment to the next at one point that I hadn't paid yet and I was told I would not be seen until it was paid. I paid it, but then never heard anything back. Things have gotten worse lately, so I went back to my family doctor and she set me up with a different neurologist. He pulled my records from the previous neurologist, but is also wanting to do another EMG.
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