Similar as MS?????

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care4cats

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Hi Everyone,
I am new here. I have been dealing with neurological problems for 10 yrs had every test done possible and I also saw 10 different drs. I got a Diagnosis in April this yr of PLS. I am wondering does anyone else have relaspes then snap out it?? I am consistent with MS so I would like to know if anyone is going through the same. Thanks
 

Vincent

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The short answer is no. ALS kills upper and lower motor neurons and they stay dead. The best you can hope for is a long plateau in progression. Once you loose something, it stays gone. Hope that helps.
Vincent
 

KimT

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Did your diagnosis come from a neurologist who specializes in motor neuron diseases? If you are "consistent with MS" did they do a brain MRI with contrast more than once during the 10 years?

PLS usually evolves into ALS at some point. If you've had PLS for 10 years, I'm hoping that your progression is very slow. If you've gained ANY function back, I'd look for a neuromuscular specialist and get another opinion.
 

Gorby

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That does sound more like MS. I have days when I feel more energetic but I've never regained function.
 

lgelb

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Just to be clear, PLS is defined as affecting upper motor neurons only, as opposed to ALS that destroys both upper and lower.

MS and PLS are completely different, since MS affects both sensory and motor neurons, but if you had MS you would want to consider disease-modifying treatment. So I would be clear about what you actually have, getting it confirmed at Dartmouth or in Boston.
 

care4cats

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Thank you for your input Yes I was diagnosed by a neurologist. I went to Boston to a MS specialist and she yelled at me and said I don't have MS.
I did have the brain MRI done with contrast I had the entire spine done also EMG testing I saw all kinds of neurologist most of them don't know whats wrong
 

ShiftKicker

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Care, did you receive an official diagnosis for PLS? Or was it a "possible" and recommended further exploration?

With regards to next steps- have you been referred to a neuromuscular specialist? Do you attend an ALS/MND clinic for ongoing care?
 

care4cats

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The neuro I see now is convinced I have PLS . She said there is nothing anyone can do for me except help with the symptoms. I did take intravenous steriods several times and they did help. I asked her about that and she said it does help with PLS. It's so confusing to me and it doesn't make any sense. She said PLS is so rare she has only seen 3 other cases. I sometimes need a wheelchair. I have problems with my upper strength I saw all kinds of neuros in Boston and Dartmouth. Everyone pretty much gave up on me except my primary care dr. He doesn't agree with PLS either he says I am consistent with MS but there is no proof. Is there a disease in between the two diseases?? I don't know it's very frustrating. Thank you very much for all your input
 

Lkaibel

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It is extremely rare in ALS to regain function and almost always temporary. My husband had some brief rebounds in leg strength that got our Neuro all excited. Happens in less than 2% of ALS patients. My husband does indeed have ALS as his progression since then clearly shows.

That said, your pattern points strongly away from ALS or even PLS. From what you are saying here, I’d suggest a second opinion definitely.
 

Nikki J

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There are so many neurologic diseases and there are also people who don’t seem to fit neatly into a box but are told that they have something significantly wrong neurologically.

I understand you have seen lots of doctors. I am unclear as to whether the diagnosing neuro is a neuromuscular specialist and if the diagnosis has been confirmed by a second neuromuscular doctor? If that hasn’t happened I would want to do that PLS is extremely rare and your symptoms do sound atypical but 2 neuromuscular opinions for any MND would be pretty standard. I always recommend Mass General ALS clinic. The doctor are brilliant and everyone is very nice. If you have not been seen specifically in that clinic please consider it

Good luck
 

KimT

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I agree with what Nikki posted. Mass General will find an answer.

I'm assuming you had a lumbar puncture?
 

care4cats

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Hi thank you all. Yes I had 2 spinal taps. I also went to Tufts medical in Boston that dr was no help either. The neuro muscular drs I did see were at Dartmouth and they had no clue. I will check out Mass General again and see if I can get down there. Thanks again for everyones help I really appreciate it.
 

old dog

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I will be 79 years old very soon and was diagnosed with PLS 8/2011. During the past year, I have had attacks of extreme spasticity rendering me unable to walk at all. With the aid of extra doses of baclofen, flexeril, and pain medication, I have recovered both times to the extent that I'm able to use the walker to get to the bathroom (about 30 feet). I don't think it is possible to completely recover function once it is lost, but I do think it's possible to improve strength to return to your own "normal" following a bad bout of illness or muscle spasms. Long before diagnosis, I suffered 3 extreme spasticity attacks where the muscles on my right side seized, putting me in excruciating pain. These spells were resolved with muscle relaxers and physical therapy. These incidents were attributed to back trouble. Every case is different. I recently read the best description of PLS I have seen on the NORD website.
 
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