ALS ?..or different neuropathy

[memikee]

don’t have a date yet for the new emg/ncs …i only got told yesterday
i would appreciate your opinion on my results - though i don’t think k there is much to see. - still think it’s all a little bizarre..

 

[Nikki J]

It certainly looks like a possible back issue and does not look like ALS. With US emgs we can usually comment on credentials if we know the examiners and also know that to bill an emgthey have to have done a large number with supervision . I can’t with UK. I know the major centers and their doctors but not beyond that. I hope you get an appointment soon

 

[memikee]

hi !- the locum neurologist i saw who initially said that my symptoms could be coming from my lumbar region has now looked up my previous lumber MRI with his colleagues and they all come to the same conclusion that the MRI is all clear and all good ..showing no reason or cause for my symptoms. And has referred me to a specialist neurologist as opposed to neurologist. So as it stands, my bloodwork are good no Venus or artery issues and a clear lumbar MRI EMG and nerve conduction studies didn’t show anything apart from the chronic denervation so I’m guessing ALS is still in the middle of the table along with some other types of neuropathy ? Still waiting for a date to see the new neurologist and I guess take it from there will keep you posted.

 

[Nikki J]

We would be guessing as we can not see and examine you. Currently the emg and the ncs do not support either ALS or a neuropathy but you will be seeing a new doctor and they may want to do their own tests

 

[lgelb]

As well, it is not unusual for the EMG to show some kind of chronic spine issue that imaging does not. They measure in different ways.

 

[memikee]

just seems so strange - if it’s not sounding like a neuropathy ,and tests are coming back clear regarding lumber mri ,pad,and blood works all good ..what options are left ?..
that can cause atrophy fasciculations and weakness in just one leg ?… i don’t expect a definitive answer obviously,but a guess or two would be appreciated?…
just so bizarre

 

[memikee]

regarding spine mri .. there i have
no pain anywhere ,no pins and needles
no numbness - and nothing in mri to suggest nerve impingement of any kind ,which collaborates with the lack of
symptoms which i should have with trapped nerve .. think it may time to leave the group,as sincerely want to clog up the system when it clearly isn’t als …

 

[Nikki J]

Please come back and let us know what happens in your follow up. Obviously your case is not straightforward or would have had a definitive diagnosis from your doctor. There are many weird neurological disorders but unfortunately there are also people who go undiagnosed. It is way too soon to give up on a diagnosis for you though

 

[memikee]

Hi - i have my emg bcs studies this saturday ..
i have however noticed in the past few days,that if i tap the top of my knee cap…not the tendon ,but the knee cap itself ,my leg reflexes and shoots forward ..but this is on both legs ..if i simply tap my knee tendon with my finger slightly ,and i mean slightly my leg again jolts forward with great speed and power -
i thought i was scared before ,but this has changed gears now … my ‘good leg’is now not as good - yes i will be seeing my neuro hopefully in a few weeks …and i am trying my damndest to keep positive ..but these powerful reflexes have thrown me ….

 

[memikee]

had my second emg /ncs today - i was there for 1 and a half hours ,not 10 minutes like the other one !!
both legs now have chronic denervation, as well as one of my arms. apparently my good leg is actually worse than my bad leg if you know what I mean. new atrophy in My foot .
All reflexes are now hyperreflexic.
brain MRI and upper spine are being ordered and I asked him what will happen if these come back all clear ?..and he nodded towards the MND sheet, and mentioned that it was a 10 to 15 year survival rate…
Still do not even know where I stand

 

[Nikki J]

Well I don’t know anyone who would say to an ALS patient 10-15 year survival. Some of us do survive that long but we are outliers. 2-3-5 years is what they say.

Chronic denervation without acute isn’t ALS either

I wonder if they were thinking PLS given the hyperreflexia ? I don’t usually hear a longevity number with that though

After you have the scans hopefully someone will sit down and explain things clearly

 

[memikee]

Hi - here are some pages of my recent Emg

 

[memikee]

the emg/ncs above have changed since my last ones 2 months ago .. now there are psw and fibs … .

 

[Nikki J]

It still isn’t an als emg though. Are you having more spine imaging as suggested in the summary? And if that doesn’t give an answer then it seems the plan is another follow up emg to see if there is progression. Neurology unfortunately does not always yield quick answers though when you are concerned about als not having a diagnostic emg is a very good thing