MS/ALS commorbidity or just MS?

New diagnosis and before diagnosis
1

Hello there, I am new to the forums and I would like to ask a few questions.

It’s about my mom (62F,Greek), who, after noticing some changes in speech last year, went and had an EMG, which showed abnormalities which doctors thought were consistent with ALS. Her NCS study was normal. However, she then got an MRI scan, which showed demyelinating lesions, especially in the medulla oblongata region and a spinal tap, which showed oligoclonal bands, both consistent with MS, so she was diagnosed with MS. Her symptoms have progressed over the last 1.5 year, she has trouble swallowing, breathing, slight hypoxia and elevated Paco2 levels (has been using a Bipap for the last 15 days for a couple hours/day), talking and walking. Her arms function seems to be alright, for now at least. I know that MS is not supposed to progress so fast, but she had lost her eyesight for a couple days in 1980 and in 2016 she had objects falling off her hands, along with some tingling here and there that always went away before she searched further. So, she probably has had MS for decades before her official diagnosis at 61.

Doctors here cannot rule out the possibility of MS/ALS commorbidity because of the abnormalities in her EMG, even though they admit it’s unbelievably rare.
So my question is, what do you think? Does trouble talking, walking, swallowing and breathing, along with EMG abnormalities match an MS patient with lesions in the medulla? Can MS cause abnormalities in the EMG? Has this occured to any of you or someone you know? Do you know any cases of MS/ALS commorbidities or maybe someone who was mistakenly diagnosed with ALS (or concurrent ALS and MS) when they had MS only?

I know that a healthcare professional is the best place to go to, however, living in a small Greek isle, the cases they have seen are limited so they can’t really be sure about anything, which means that your insights here could prove really valuable moving forward. If you need any more information, I will gladly provide to you.
I wish all the best to you and your loved ones and sorry for my poor English!

2

I am sending you a virtual hug. I can’t advise but my suggestion would be to take your mum to Athens or Thessaloniki, take her to one of the hospitals there for some tests. You need better doctors and tests for these situations, and I worry that your region cannot offer the opportunity for a thorough review of your mum’s health. You may say: “how do you know?” I know because I am Greek, I have lived in rural Greece for 24 years. I was diagnosed with MS in England. Please do a search for ΣΑμΣΚΠ and make contact with them. They will offer better advice and support, they will direct you to the right resources. I know it’s extremely difficult, being diagnosed with MS in Greece, costwise, etc, but there are some very good doctors in the local hospitals.

Maria

3

Thanks a lot for your advice!
Doctors here are doing their best, problem is they have never seen such a case. Her lesions location can explain her symptoms, but so can ALS and they can’t know for sure. They are certain it’s Multiple Sclerosis, this is why she is on Copaxone for the last 2 months, but they don’t know if it’s also ALS.
I will contact the centre you suggested, I believe they might offer some guidance, or at least I will be able to speak with someone that has gone through such a confusion.
Thanks a lot and all the best to you and your loved ones.

4

Hi Econstudy,
Just to say I’ve had ALS 11 years. At first they thought it was MS but I had a normal lumbar puncture. But it caused brain lesions and transverse myelitis (lesions across the spine). I am now fairly handicapped. My neurologist told me it’s impossible to have the two together. But if there is any suggestion of ALS she should be taking anticoagulants so as to avoid repeat attacks. Good luck.

5

Thanks a lot for sharing your experience!

What were your symptoms that made you go check it up?

Good luck with your battle and I truly hope that they find a better therapy soon.