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RLS, fasciculations, tremors, small fiber neuropathy

Posted by patriciajean @patriciajean, Jan 17, 2023

Hi, I'm new here. I wanted to share that I found RLS to be absolute torture for 18 months until I started Sinemet. However, after a year or so the wearing off brought my symptoms back. I was taking Sinemet every six hours but only having relief for about 3 hours. And RLS woke me up every 3-4 AM so I'd have to take a dose and squirm for30-45 minutes before getting back to sleep.

Then a movement disorder specialist gave me a trial of Neupro and holy smokes, what a massive relief. I would be unable to afford it but am low-income so was able to get the drug subsidized. I'm not sure I could stand living without it, honestly.

I still have tremors, fasciculations and small fiber neuropathy. None of the neurologists I've seen can give me a definitive diagnosis. Early on, I was debilitated enough that my first neurologist suspected MSA or PSP but I've had a normal DaTscan and my symptoms are fairly well-managed now, so nobody seems to know for sure.

I'd encourage everyone who can do so to fill out forms to donate their brain/spinal cord to a brain bank. They need normal brains as well as those possibly diagnosed with neurological disorders. Even if I never know what's causing my symptoms at least my family may learn after I'm gone because the brain bank does an autopsy and informs the next of kin of their findings. Several different processes cannot be definitively diagnosed until autopsy and that's how Robin Williams was finally diagnosed with LBD, through autopsy. Even if they never find a neurological process going on with me, my donation will help and that's what matters.

Sorry for the long post, but I wanted to share in case someone finds this info helpful!

Take care, hope all have a great week!

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

christine6682 | @christine6682 | Jan 25, 2023
In reply to @patriciajean "Did a neurologist diagnose you with anxiety? Did he/she follow up with treatment for anxiety? Or..." + (show)
@patriciajean

Did a neurologist diagnose you with anxiety? Did he/she follow up with treatment for anxiety? Or refer you to a neuropsychologist for follow-up and treatment?

There is no single test for anxiety, it is a clinical diagnosis, just as there is no single test for several of the neurological disorders, they are diagnosed clinically. But after a clinical diagnosis comes treatment and if the treatment is successful, you have an answer of sorts.

It seems ironic that your doctors would rely on tests alone when it comes to your symptoms but not need a test to diagnose you with anxiety. At the very least it seems unprofessional to give you a diagnosis but no treatment or referral for treatment.

That's why I'd see another neurologist, for sure!

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I don't know whatelse to do. I've showed them the swelling. The tremors. The vision loss. They just say anxiety. Doesn't make sense. It's NOT ANXIETY ;(

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christine6682 | @christine6682 | Jan 25, 2023

I'm tired of feeling this way with no answers. I don't know what else to do

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patriciajean | @patriciajean | Jan 25, 2023

It sounds as if you've gone the rounds, for sure. Some symptoms can be managed and some cannot. When I realized I would be living with unmanaged/undiagnosed symptoms I saw a neuropsychologist for testing. It takes 4+ hours but that would answer your cognitive and anxiety questions Then I asked my neurologist to refer a therapist to help me deal with living with my disorders. So now I see a therapist every two weeks and he is very knowledgeable about the nervous and endocrine systems and how to help me get the best out of my brain and body.

That's the road I took and maybe that would help you as well. Take care!

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falconhawaii | @falconhawaii | Jan 26, 2023

I'm in a similar boat as you. I have a question, and don't jump on me for it-- it's just a question. First, when exactly did you notice these symptoms? Again, just a question, but could the Covid vaccine may have contributed to anything? I had some mild teeth chattering in late 2020, but somehow that progressed substantially, and some people here mention the vaccine as a possible link. I'm skeptical, but keeping all possibilities just that. I just want facts, of course, even if it is far-fetched.

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cookierockwell | @cookierockwell | Jan 26, 2023
In reply to @christine6682 "They couldn't figure out why I have tremors on one side of my body. So 5..." + (show)
@christine6682

They couldn't figure out why I have tremors on one side of my body. So 5 nerologist that I went to said must be anxiety. Gave me klonipin. Then Xanax Ativan. None of which work. Because it's not anxiety. It's a tremor in my leg and arm with swelling. I have been to so many drs. It's got me at my wits end. Only thing ever came out positive was Lyme disease and they gave me antibiotic. And symptoms are still here. I don't know what else to do anymore

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Christine, I just did a search for long-term effects of Lyme disease, and I think that may be your answer.

Johns Hopkins: Study Shows Evidence of Severe and Lingering Symptoms in Some after Treatment for Lyme Disease
https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease
Mayo Clinic -- scroll down to get to the section on long term effect
https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651#:~:text=These%20longer%2Dlasting%20symptoms%20may,Constant%20or%20frequent%20tiredness.
CDC: Post-Treatment Lyme Disease Syndrome
https://www.cdc.gov/lyme/postlds/index.html
Rheumatologists are the specialists who treat Lyme Disease. Have you seen one yet? If not, maybe make an appointment and ask for an evaluation.

Something else that comes to mind -- have you ever had COVID? I'm just wondering if even some of your symptoms may be due to Long COVID. If you've never tested positive for COVID, see if you can get one of your doctors to give you orders for the lab test that shows if you've ever had COVID.

Best wishes to you that you find some answers and some relief soon.
Cookie

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christine6682 | @christine6682 | Jan 26, 2023

Yes cookie. I've been to 4 of them. No answers again said the same thing. My body is shutting down i can feel it and I can't heal myself cause I dont know why it's doing this. The pain from not eating is awful.. yes I've been tested 5 times for covid all negative. I read everything about Lyme and what the end stage does and I think I'm at the end stage of it.. they wouldn't listen to me when I told them from day one something was happening to my body and my brain.. it's just awful. And trying to find a Dr to listen and say yes this is what it is this is how we can help you. They turn you away and say nothing wrong... you don't go from a completely healthy women to debilitating ailments like this. Thank you for responding

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