Uncertainty

Status
Not open for further replies.

OSheaAllDay

New member
Joined
Apr 30, 2022
Messages
1
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
WA
City
Perth
Hi,

My GPs (I have two after seeking a second opinion) both express ongoing concern about atypical ALS-like symptoms despite having seen 2 neuros and remaining undiagnosed.

Aug 2021
24/7 fasciculations start, primarily and constantly inside edge of left foot and outside edge of left hand, but also less often (every few minutes) everywhere (calves, tummy, glutes, one place on skull)

Sep 2021
Calf discomfort starts. My right calf has a constant feeling of some discomfort and uncoordination. I can stand and walk and am not aware of loss of strength. PT stretches and massage have not helped. Still the same Apr 2022.

Sep 2021
Neuro does NCS and EMG and says nothing showing. He sees brisk reflexes.

Jan 2021
Left bicep pain starts that after a couple of weeks just I’d describe as an aching weakness. Arm sore after holding up fork during a meal etc. Still the same Apr 2022.

Jan 2021
Tightness of finger muscles/joints starts. Still the same Apr 2022.

Feb 2022
Neuro repeats NCS and EMG and says can now see ‘simple fasciculations’ in EMG but nothing else. Still have brisk reflexes.
Suggests return in 3-6 months.

Just after I feel confident with neuro, my GPs remind me that MND can present in many different ways and sometimes slowly and that while it’s great I’m not diagnosed, they don’t have an alternate theory about what’s wrong with me and I was told that MND ‘isn’t showing now but the neuro wants you back to see if it’s showing in a few months.’

MRIs, ultrasounds, ct, X-ray, lumbar puncture and a whole stream of other specialists have all come back with nothing to show.

So my questions are…
1. I know that ALS can be a long path to diagnosis. Is this because it takes so long to get to an neuro and an EMG or because it can take so long for a neuro and an EMG to be able to see ALS?
2. Neither my GPs nor my neuro has any theory on what’s going wrong with me. I don’t know if I’m seriously ill. Does anyone have any advice on how I might proceed?
3. Is there a specific way to test if my bicep/calf problems are actual weakness. They sort of feel that way, but is there some kind of machine or test that can measure it?

Thankyou for your kind assistance.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,866
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The road to seeing a neuro is often long. Once people who end up having ALS get to the proper person ( often after detours through orthopedics physical therapy rheumatology and other places) they are usually diagnosed. If not they are at least told something is seriously wrong and followed.

i would believe the neurologists and the emgs over the gps

there is no test you can do for weakness. Please don’t self test. You can hurt yourself. Generally weakness is detected by clinical exam. There is actually a machine , invented by a physical therapist at Massachusetts General in Boston, that measures strength but it requires a trained professional to administer and is not widely available.

read here for our thoughts Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,340
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Not sure why you call these ALS - like symptoms, and sometimes there is no aha dx that explains it all. There are many types of physio if the discomfort impedes function, which I'm not sure is the case. Many other forms of bodywork like Pilates and swimming can help. Take long walks and see how strong you really are. You can also ask for a rheumatologist referral if the pain does not relent. It could also be post-viral.
 
Status
Not open for further replies.
Top