downfieldbe
New member
- Joined
- Oct 30, 2009
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- City
- bedford
Hi everyone
I'm aged 36 and male (UK based), and for circa 24m have been on a notable downward trajectory physically. Very grateful indeed for any input. (previous thread here)
I've dealt with symptoms of (supposedly) Functional Neurological Disorder for at least 15 years, which have waxed and waned in that time but never disappeared.
Symptoms like:
Limb/hand/foot weakness (worse on the right side)
General fatigue
Speech/swallowing issues (pre-slurring, excess saliva, weak voice etc)
Fasciculations (all over the body)
Numbness/tingling
"Tightness" in the leg muscles
Still nothing that has ever been strong enough to be observed externally (thus far), but I know that I feel it and that it's "genuine" (!).
Anyway, 2021-23 was a period of EXTREME stress for me, and for the last 24m or so these symptoms have gotten gradually noticeably worse, without remission (unsurprising that my stress levels have had some kind of negative effect). A marked change vs how they were before (waxing and waning but overall mild, vs now much worse and stably going downhill).
I had an EMG summer 2023 which picked up "widespread chronic denervation" - and some "active" - and concluded "the clinical cause is uncertain but this is not simply FND" (EMG shown in photos marked "1"). ALS alert?!!
Despite this a neuro this year told me EMG interpretation is SUBJECTIVE and the clinical exam is the most important element - which was normal. In his words, "absolutely not ALS". He also ordered another EMG 6m ago which came back clean & normal (shown in photos marked "2"). A second neuro was then of the same opinion - "I guarantee you don't have ALS". Do EMGs often show up this differently...??
I know it might sound silly based on these neuros' verdicts but I remain concerned and wonder if after years of extreme stress I've "triggered" ALS that is still sub-clinical (either that or/and I've strongly exacerbated my "FND"...?). After all, a neuro clinic exam is only a brief look at one's overall functioning. God knows my day to day life is pretty restricted at the moment due mainly to significant weakness/exhaustion. Even a half hour walk is a bit of a mission right now. No question that it's getting worse.
I've read one too many stories on forums about neuros getting it wrong or confidently dismissing ALS (as in my case), and ALS later ending up as the diagnosis after all...
I think I'm going to try and get an appt with an ALS-specialist neuro, and maybe a third EMG (especially as the two so far have been so different). If this isn't ALS I don't know what the hell can explain this sort of downhill physical dysfunction.
Hugs to all of you...
I'm aged 36 and male (UK based), and for circa 24m have been on a notable downward trajectory physically. Very grateful indeed for any input. (previous thread here)
I've dealt with symptoms of (supposedly) Functional Neurological Disorder for at least 15 years, which have waxed and waned in that time but never disappeared.
Symptoms like:
Limb/hand/foot weakness (worse on the right side)
General fatigue
Speech/swallowing issues (pre-slurring, excess saliva, weak voice etc)
Fasciculations (all over the body)
Numbness/tingling
"Tightness" in the leg muscles
Still nothing that has ever been strong enough to be observed externally (thus far), but I know that I feel it and that it's "genuine" (!).
Anyway, 2021-23 was a period of EXTREME stress for me, and for the last 24m or so these symptoms have gotten gradually noticeably worse, without remission (unsurprising that my stress levels have had some kind of negative effect). A marked change vs how they were before (waxing and waning but overall mild, vs now much worse and stably going downhill).
I had an EMG summer 2023 which picked up "widespread chronic denervation" - and some "active" - and concluded "the clinical cause is uncertain but this is not simply FND" (EMG shown in photos marked "1"). ALS alert?!!
Despite this a neuro this year told me EMG interpretation is SUBJECTIVE and the clinical exam is the most important element - which was normal. In his words, "absolutely not ALS". He also ordered another EMG 6m ago which came back clean & normal (shown in photos marked "2"). A second neuro was then of the same opinion - "I guarantee you don't have ALS". Do EMGs often show up this differently...??
I know it might sound silly based on these neuros' verdicts but I remain concerned and wonder if after years of extreme stress I've "triggered" ALS that is still sub-clinical (either that or/and I've strongly exacerbated my "FND"...?). After all, a neuro clinic exam is only a brief look at one's overall functioning. God knows my day to day life is pretty restricted at the moment due mainly to significant weakness/exhaustion. Even a half hour walk is a bit of a mission right now. No question that it's getting worse.
I've read one too many stories on forums about neuros getting it wrong or confidently dismissing ALS (as in my case), and ALS later ending up as the diagnosis after all...
I think I'm going to try and get an appt with an ALS-specialist neuro, and maybe a third EMG (especially as the two so far have been so different). If this isn't ALS I don't know what the hell can explain this sort of downhill physical dysfunction.
Hugs to all of you...