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- Thank you for your message. I'm currently experiencing symptoms that I believe fit bulbar onset or some type of neurological disease. I have seen 2 neuros in the last 10months (my last appointment was in Jan of this year). I was told to wait & see if anything progresses. I've had 1 EMG & of the bulbar region which came back all normal - that was in Jan this year. my symptoms aren't getting any better despite me trying to move on & ignore them.
The saliva issue is the most bothersome symptom for me. I feel as though I am losing my muscle function around my mouth & cheeks. My words don't sound right either when I speak, my family have told me that I "pause" & sound like I can't get the words out. This is terrifying for me... I can't see a neuro for another 3 months, and I'm worried that when I do, they will give me the diagnosis that I don't want to hear.
I'm only 29yrs old. I also have some weakness in my L hand, fasics in L calf & under foot and my balance isn't the best
- Hello Oscar, how you doing?... I'm kinda new to this forum... and well trying to know what's wrong with me... my Neuro checked my EMG and it concluded s1 root irritation bilateral (some denervation in calves) with some cubital /carpal entrapments... my Proteins (gamma part) were high.. man.. this is all weird.. my leg i think is progressively getting weak.. maybe i'm starting to limp... YET NEURO doesn't tell me what's wrong.
From last we spoke, symptoms are very similar. Mild atrophy in feet, not greatly affecting function. Mild coordination problems in hands. Speech difficulty not apparent to anyone else but me. Double vision and ringing in ears at times. Fascics and cramping but not severe. EMG normal except for signs of chronic denervation in left hand, nothing active anywhere. Also slightly elevated protein. MRI clear here too. They think I have an autoimmune condition, CIDP or MMN variant. Crazy stuff, but if we had ALS, we'd know by now. It's never THIS slow. Have you tried dietary changes? IVIG? Any abnormal labs?
- Hi mag, i just wrote you a long msg but i dont think it sent. It was great to hear from you!..i totally understand what you mean, would you share your story and emg results with me? right now i have twitching and weakness symptoms and a emg suggestive of chronic denervation ..i have had all blood work normal and a mri on brain which was normal only some non specific white matter. i have seen 6 neuro's and spent time in hospital and none of them care to much about the emg results and if i bring up possibilities like kennedys or als they just dismiss me..i find that hard to swallow given my emg results.
- Hey Mag,
Nice to meet you, it was good to hear from you. I t is not very pleasant at all when the emg comes back dirty, it breaks your spirit and sends you into stress and axiety, i have been to another 2 neuro's with my emg results which is suggestive of chronic denervation in every muscle they tested and the neuro's dont seem to know what it is or care to much about it and tell me to go away and repeat the emg in 3 months or that the guy that did the emg might have botched the emg as its not a real conclusive reading, thats ok but where does that leave my head space? you know. I to have weakness in my lega and upper back and arms as well as twitching constantly. Its good to be able to speak to people on here, who understand all of this. Right now i have lots of symptoms and a inconclusive dirty emg and i have seen 6 or 7 neuro's and they tell me to come back in 3 months...even tho the emg is dirty..its baffling to me. Whats your story? what did your emg show?
- Hello Oscar,
I have been trying to figure out what's wrong with me for 4 yrs now. I saw a number of docs (neuro, psych, Intern med) and I don't really know what to tell you except that I understand your mental and physical state. It is hard living in discomfort and stress for years and appear to the medical community as "healthy". I have a hard time looking forward to anything since I feel a grief for my self diagnosis of ALS. I had help and went on anti anxiety/depression meds for a few months. It did help my mental state but the pain and fatigue were always there. My symptoms progress slowly and I always get down when I notice a new cramp or weakness. It's a tough journey. I am sure you read up a lot on CFS and BFS. I am trying to convince myself that this what I have and that things will get better. Unfortunately, every morning is the same: stiffness, weakness, twitching. Keep your spirits up, I will let you know if I ever get better, maybe we have something similar.
- Thanks for your note Mag. I guess the good thing is that the emg doesn't lie so as long as it is clear then it isn't als. Most still think that in my case everything is from the nerve compression in the back but it doesn't explain weakening. I just hate feeling like this. My anxiety is so high I am have a really tough time at work concentrating. I am going to ask the neuro for some anti-anxiety meds. So what kind of test are they doing next on you?
- Hi Mag, little bit sad and bored....I would like to turn back to my active and busy life but I know I can't. Yesterday I went to the market and then cleaned house...at the end my legs were painful and stiff and weak as they have never been before. I'm a little scared couse I've stairs in my house and if things go on like this in a little time I'll have to sleep downstairs on the couch. I'm still waiting for being called from the clinic so I don't know when will the day hospital be.
It seems your cat has found the way of keeping you busy, you're certainly a good chef!....what about the mouse? Is he still missing?
Ulisse always wants to go out for a walk but how I explain to a dog that I'm sick? hugs Kiara
- About oscar1
- State or Province
- How has ALS/MND impacted you?
- unknoen neurological problem
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- not working live with parner
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