Hi--although you cannot formally diagnose someone over the internet, I would appreciate some indication as to whether I have the early signs of ALS and what I should do. Where I live it could take 6 months to see a neurologist and the thought of having ALS is absolutely anxiety provoking to me to the point I feel I can no longer cope. Any information/insight will be most helpful---please! I cannot cope for 6 months worrying about this.
1.5 years ago I had a series of "bizarre", fluctuating symptoms over 4 months which involved some tingling in my bilateral extremeties (at different times, different limbs), scalp. It would come and go in waves; some sense of numbness on my face, heart palpatations, feeling like I had a lump in my throat, etc. In hindsight, I figured it was due to my extreme fear of flying as I had just taken a trip. All symptoms resolved within 4 months completely. Now, starting September 12 I started to have a bitter taste in my mouth, which comes and goes and doesn't seem to be as bad now, but is still present. About 2 weeks after that, I started having that "almost falling asleep" feeling in my left arm and left lower leg which came and went. Then it turned into what felt like mini, fast, twitches that you couldn't see. Most recently it turned into just fine twitches (kind of like after exercise) and have almost completely resolved. No actual weekness or functional impairments. 2 weeks ago I had a feeling of swelling under my jaw (which I've had before and goes away), but then it turned into a feeling of a lump in my throat (which would happen a couple times of day). Then, with the lump came the feeling that I wasn't swallowing properly. I can still swallow, it just didn't feel like a normal swallow. Now the lump feeling is gone, but I still have it happen where a couple or few times a day I feel like I'm not swallowing totally normal. This feeling does not happen when ingesting food or drink. I do not choke.
So...to recap...In the last 2 months I've had fluctuating symptoms of bitter taste, tingling/twitches down left arm and left lower leg and now some minor difficulty swallowing (if you can call it that). I am an anxious person although I have not been formally diagnosed with general anxiety disorder (yet).
Get on that waiting list, Jen. You probably do not have ALS- ALS is very rare and it usually occurs in males- but a lot of the symptoms that you have described are concurrent for Multiple Sclerosis, and other motor-neuron impairments. I am not a doctor (yet), but I was diagnosed with progressive relapsing multiple sclerosis almost 3 years ago, and so understand the anxiety that you are experiencing. It sounds like you are highly functioning, and if you do have MS- or something else- you will have a much better chance of remaining so if you are on treatment. I am assuming that you live somewhere that has universal health care- I'm in the US and I pay $225 a month for health insurance- and I still have to wait 3 months to see my neurologist.
Believe me- I speak from personal experience- "not knowing" is the hardest part.
Thanks for your comments--much appreciated. I also suspect MS if it isn't ALS as I've had 2 family members with it. Since my first post the swallowing has completely resolved. I still get a bit of bitterness in my mouth and seldom have twitches or pins and needles anymore. Maybe I'm rationalizing out of desperation, but I'm starting (hoping) to think that my symptoms may not be as related as I once thought. The taste seems to follow a pattern with my menstrual cycle as I track my symptoms each day in a database. The twitches, when they happen, are when my muscle is at rest and immediately stop when I engage the muscle with is concurrent with BFS. I have no weakness and never have. The throat/swallowing thing could be the result of a minor trauma as I was constantly hyper-extending my neck to relieve the lump feeling as well as constantly pressing on my throat. Now that the feeling is resolved I can actually bring it on (to a much lessor extent) if I swallow a few times with my neck hyper-extended.Went back to my doctor because of my anxiety, but she doesn't want to do anything else but wait for the neuro consult. I think I should have an MRI, etc for the neurologist to see. I need to do something so I can cope with the fear. I have made an appt to see a psychologist related to the anxiety, but it doesn't help that my family doctor isn't overly supportive :(
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