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Old 09-11-2015, 12:25 PM #1 (permalink)
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Default Lyme and PLS

Hi all- I am new here. My father has been struggling for about 5 years. His neurologist hinted at PLS a while back but they are attempting to "rule out" everything else first.
I guess I am wondering how many of your symptoms came on? For my father he fell and broke his ankle. He just never walked the same after that. The docs blamed it on his foot (he had another surgery for that) and then on a bulging disc in his back (another surgery for that). Now, they can't explain it.
It really is his right side- horrible essential tremors with his right hand (mild on his left) and he cannot really lift his right foot. He has a walker but I am afraid he will be in a wheelchair in a few months. He has fallen recently a few times and now is really scared.
I do think his speech has slowed and thickened a bit but he would argue with that!
He has had tests....no ALS and no Parkinsons.... I thought it sounded a bit like MS but the docs don't seem to think so.
On the other hand, he has had Lyme twice (treated immediately)and somewhere deep down I wonder if this is some kind of relapse. Unfortunately, I am pretty sure we are dealing with PLS.
I guess I am also just asking for advice on how to help him and my mother (who has become his caregiver). This has been overwhelming and painful to watch.
Any advice anyone can give on getting a firm diagnosis would be appreciated as well. I do feel like he is under excellent care. His docs are top notch at one of the best hospitals.
Thanks so much! In reading this forum, it is clear so many of you provide support and encouragement for each other.
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Old 09-11-2015, 03:38 PM #2 (permalink)
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Default Re: New here- waiting for diagnosis

Hi! Welcome! My diagnosis came about unexpectedly--I had ruptured a disc in my neck(2nd one) and went to my neurosurgeon to schedule surgery for it. While there, he had assistants who put me through tests. Eventually he came back in and repeated the tests and then announced that I had ALS--which eventually got downgraded (thank god) to PLS. I went to three other neuros, though--and I would stress to you that you have your dad go to at least that many--especially with the Lyme disease. Plus, PLS is supposed to be slow moving--I knew for years that something was up before I ever saw a neuro--I just figured if I ignored it it would go away--your dad seems to be progressing quickly. Good luck with your search, and don't give up until you get at least 2 matching diagnoses.
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Old 03-11-2016, 08:47 AM #3 (permalink)
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Default Re: Lyme and PLS

The spirochaetes responsible for Lyme disease can hide in different parts of the body for long periods of time and patients may develop problems with muscles, joints, brain and nervous system. One should not rush to a specialist but should first go to a primary care doctor. Diagnosis of PLS is difficult and most serological exams are negative. Other interventions to ameliorate PLS are treating with a low dose antidepressant. Herbs can be used to tame reactions like joint pains. Positive emotions are critical to recovery.
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Old 03-23-2016, 10:29 PM #4 (permalink)
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Default Re: Lyme and PLS

I'm still not sure about my own diagnosis to be honest But my symptoms got worse all of a sudden, I started experiencing some odd new ones and now I'm still puzzled. I recommend you to find a good neurologist for him, but I think it's awesome the doctors have already ruled out a lot other things Sometimes you need to be a bit pushy with the doctors, but that is ok. Sometimes it's necessary, specially when it comes to tests.
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