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[ALSquestion]

Hi,
I have had symptoms of progressive left leg weakness, calf muscle atrophy for 4 months. I have recently started left whole side (back and arm/shoulders) feel weak and lean towards my left side. I also noted diffuse fasciculations (all over). Since Oct 31st, I have had a negative brain/neck MRI, negative EMG in Oct and repeat in Dec 13 was negative (second opinion). I do not have a diagnosis. However, symptoms progressing and now limiting mobility. I have been on work leave from Oct 31-Dec 31 and do not foresee a further extension. This would result in loss of financial support and health coverage. I have only couple of months reserve left. What support options do I have available in Texas?
Thanks

 

[lgelb]

Most of the support options will rely on a diagnosis. What does your PCP/neurologist say about next steps? Are you eligible for disability benefits where you work? COBRA?

 

[ALSquestion]

I am currently on short term disability and have asked about Cobra (expensive option). Neurologist planning Rehab therapy and repeat testing in few months?

 

[Nikki J]

For insurance an aca plan may be more affordable. Do you have any long term disability insurance? If you are disabled your neurologist should be willing to do the paperwork while completing their workup

 

[ALSquestion]

Still waiting for a diagnosis. Primary neurologist will repeat visit/testing Jan 21. Looking to extend short term disability coverage?

 

[Nikki J]

That would be a question for your std policy provider or hr if it is possible. My std was 90 days after that I could use my ltd policy even if it was possible that I would be returning to work.

Once you have clarified what coverage you can get you would need your doctor to complete the paperwork

Disability policies that you get through work or privately all have their own rules so every situation is unique

 

[ALSquestion]

Repeat EMG on Jan 31 was normal. However my symptoms continue, still no diagnosis. The neurologist said to monitor clinically. I am seeing another neuromuscular specialist Feb 27.

 

[Clearwater AL]

If I'm reading your Thread right you've had three EMGs all negative for ALS ?
If so this forum is really not for you anymore.

You are seeing another neuromuscular specialist Feb 27th ? Is this a
new neuromuscular specialist that was referred by one of your doctors or did you
request him/her ?

I hope you are not convinced that you have ALS. That will only confuse
what your doctors are really looking for.

I hope your health issues are resolved soon so your can go on with your life
without the worrying burden thinking of ALS.

 

[ALSquestion]

Thanks for your response. I am seeing the new NM specialist after requesting recs from my current Neuro. I am not fixated on one diagnosis, just want to know what it could be?

 

[lgelb]

It's still a long list from what you've said. Discuss that with them -- what's on the table and how it'll be ruled out. In parallel, I would also stay in touch with your PCP as it could be systemic or a combination of things.

 

[ALSquestion]

What’s the average time to diagnosis for rule in or out? Especially timing in regards to EMGs performed? I read that EMG is very sensitive, but can also miss early ALS?

 

[lgelb]

You've had 3 negative EMGs over the last 5 months, so I don't think it's a question of "missing" ALS given the extent of disability that you report. An EMG sees dying and dead motor neurons that cause loss of mobility due to ALS. It's not possible for there to be so many that you have all these problems and yet unseen by the EMG.

You do not mention the extent of weakness seen on neurology exam? That would be an important piece of information.

I would also consult with your PCP to make sure you have worked through systemic differentials and also ask about a PT and/or phys med/rehab (physiatrist) evaluation. It also sounds trivial, but I would re-evaluate all the places you sit and lie down and make sure you have the right support and are not getting stuck in the same position for too long. I would also make sure your sleep and nutrition are all they can be, which your PCP can also advise on.

If you are leaning to one side, I would consider a cane for support.