RLS, fasciculations, tremors, small fiber neuropathy

Posted by patriciajean @patriciajean, Jan 17 9:10pm

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.

Hello and welcome @patriciajean. Your information is very helpful, from your experience with certain medications to your thoughts about brain banks and neurological research. Thank you for sharing on Connect.

I'm glad you have found relief for your symptoms. It's odd how we wonder about diagnosis even after we've got a bunch. For instance, you have diagnoses of small fiber neuropathy and restless leg syndrome. Me too.

I'm curious if you have ever explored the neurological condition called Central Sensitization Syndrome?

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I haven't read up on that but I will, thanks you. My neurologist diagnosed me with a Parkinsonism a couple of years ago but I'm doing pretty well! My tremors and fasciculations are progressively worse but pain isn't a problem. Sometimes I get painless cramping and sometimes I get painful spasms but nothing too bothersome. I'm grateful for your message and will check that out!

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@patriciajean

I haven't read up on that but I will, thanks you. My neurologist diagnosed me with a Parkinsonism a couple of years ago but I'm doing pretty well! My tremors and fasciculations are progressively worse but pain isn't a problem. Sometimes I get painless cramping and sometimes I get painful spasms but nothing too bothersome. I'm grateful for your message and will check that out!

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Hi Pat, @patriciajean. If you'll notice the "@mention" of you in my reply. This is a way to notify a member (if their notifications are activated) of your response. Otherwise a reply may be missed or not seen until the member comes back to the thread…like me, today! Haha

Good news that your doing pretty well with Parkinsonism after 2 years. Even if there is no pain, there must be aggravation? Do you have any techniques that help you with varying symptoms and flares?

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@rwinney

Hi Pat, @patriciajean. If you'll notice the "@mention" of you in my reply. This is a way to notify a member (if their notifications are activated) of your response. Otherwise a reply may be missed or not seen until the member comes back to the thread…like me, today! Haha

Good news that your doing pretty well with Parkinsonism after 2 years. Even if there is no pain, there must be aggravation? Do you have any techniques that help you with varying symptoms and flares?

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Hi, @rwinney, thank you for letting me know about the @, I appreciate the help!

Here are my techniques (after the dopamine agonist, which is #1).

#2-Exercise is absolutely necessary for me. I cycle several days a week, a minimum of an hour indoors or 1.5 hours outdoors and I walk a minimum of 2 miles several times a week. I do interior painting 10-15 hours a week on average. And yoga twice a week, housework, yard work so I try to be active every day. I use a Garmin Vivoactive watch and keep my daily steps above 5,000 every day.

#3- Healthy diet – low-fat, mostly plant-based. I don't drink or smoke.

#4- Mental health – I see a therapist every 2 weeks via Zoom – he's very knowledgeable about the nervous system as well as the endocrine system and how these systems affect our mental state and visa-versa! We so often overlook the importance of taking care of our mental health. We can't control what happens to us but we can control our response to what happens to us. And how we respond directly affects our physical health so I work hard to reprogram my neural pathways to "let it go" whenever things get difficult.

#5 – Sleep. The body/brain rebuild during sleep so I try to maintain good sleep habits. I haven't done a sleep study but will probably do that in the future as my watch indicates I often don't get any deep sleep at all. My husband can feel my fasciculations while I'm sleeping so my nervous system isn't taking much of a break!

#6 – My village – I've built a village of friends who (in addition to my wonderful spouse and my family) give me a lot of support. They know my struggle so I can reach out to any of them whenever I feel the need. A support group is REALLY important in life in general and crucial during a health crisis.

Besides tremors, fasciculations, SFN and RLS, I have bladder urgency and retention, occasional orthostatic hypotension, reactive hypoglycemia, palpitations, ataxia, difficulty finding words, counting money, being lost in familiar places, tripping, weakness. I drop things and I've lost some confidence with new people because of my difficulties. But I keep a sense of humor which is probably up there between #1 and #2!!

My apologies if this was too much information! Take care and have a great week!!

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I have the same things going on. Tremors etc. Getting lost in familiar places vision loss. And no dr can seem to find out why. All tests have been done and no answers. I was healthy 3 years ago and then it started. I dint know who else to see to get diagnosed and proper treatment for this undiagnosed thing I'm going thru. One side of my body is cold and swells up. I've lost my appetite and sense if smell and taste. Been checked for covid. That's negative. Anyone have suggestions? Please I would appreciate it

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@patriciajean

Hi, @rwinney, thank you for letting me know about the @, I appreciate the help!

Here are my techniques (after the dopamine agonist, which is #1).

#2-Exercise is absolutely necessary for me. I cycle several days a week, a minimum of an hour indoors or 1.5 hours outdoors and I walk a minimum of 2 miles several times a week. I do interior painting 10-15 hours a week on average. And yoga twice a week, housework, yard work so I try to be active every day. I use a Garmin Vivoactive watch and keep my daily steps above 5,000 every day.

#3- Healthy diet – low-fat, mostly plant-based. I don't drink or smoke.

#4- Mental health – I see a therapist every 2 weeks via Zoom – he's very knowledgeable about the nervous system as well as the endocrine system and how these systems affect our mental state and visa-versa! We so often overlook the importance of taking care of our mental health. We can't control what happens to us but we can control our response to what happens to us. And how we respond directly affects our physical health so I work hard to reprogram my neural pathways to "let it go" whenever things get difficult.

#5 – Sleep. The body/brain rebuild during sleep so I try to maintain good sleep habits. I haven't done a sleep study but will probably do that in the future as my watch indicates I often don't get any deep sleep at all. My husband can feel my fasciculations while I'm sleeping so my nervous system isn't taking much of a break!

#6 – My village – I've built a village of friends who (in addition to my wonderful spouse and my family) give me a lot of support. They know my struggle so I can reach out to any of them whenever I feel the need. A support group is REALLY important in life in general and crucial during a health crisis.

Besides tremors, fasciculations, SFN and RLS, I have bladder urgency and retention, occasional orthostatic hypotension, reactive hypoglycemia, palpitations, ataxia, difficulty finding words, counting money, being lost in familiar places, tripping, weakness. I drop things and I've lost some confidence with new people because of my difficulties. But I keep a sense of humor which is probably up there between #1 and #2!!

My apologies if this was too much information! Take care and have a great week!!

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Am I sending messages so ypu can see them?

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@christine6682

Am I sending messages so ypu can see them?

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Hi, Christine – yes, I can see your messages. I'm sorry you don't have the answers that you need. Have you seen a neurologist and a rheumatologist? When you say "all tests" does that include a brain MRI and/or a DaTscan? Have you had autoimmune testing?

It is frustrating to have to deal with symptoms without knowing their cause. I've learned that not every disorder can be definitively diagnosed and I've seen a plethora of doctors. Most were helpful in some way, a few were dismissive – even a neurologist at Mayo Clinic. He said, "If you hadn't been on Levodopa-Carbidopa, I may have been able to give you a diagnosis." Well, neither he nor his staff ever suggested I stop taking it before I spent $3,000 I could ill-afford to get to Rochester to ask for a diagnosis!!! Every time I asked him what could be the cause of one of my symptoms, his answer was always, "Well, the test was normal." I said, "I have trouble emptying my bladder, I have to really work at it and keep trying, it takes several tries to get it empty when I get up in the night or first thing in the morning." He said, well the sonogram shows your bladder is empty." When I said sometimes my blood pressure drops when I stand up, or have been standing awhile, especially in the heat," he said, "Well, the tilt-table test was normal." He could give me no possible cause for my tremor, SFN, RLS, weakness, fasciculations or anything else, because, "the DaTscan was normal." I asked if the DaTscan was reliable for diagnosing a Parkinsonism and he said, "Well, it's true, no test is 100%." Which means that his constant, "Well, the test was normal," did not get me any closer to a diagnosis and that was the entire point of my expensive journey. My husband tried to explain to him that he can feel my muscles twitching all night when I'm asleep, as if my nervous system is constantly misfiring and to that he said, "The EMG was normal."

He did offer to refer me to a pain clinic, assuring me that, "Pain disorders like fibromyalgia are quite real," even though pain wasn't one of my symptoms. Even being dismissed in this way taught me something. It taught me that there are neurologists who are not good at their job.

Many neurological disorders are diagnosed clinically – not through testing. My (first) local general neurologist diagnosed with with a parkinsonism after seeing me clinically every 3 months for 2 years, by ruling out other diseases through testing and by my positive response to Sinemet. Since then I've gone to Mayo Clinic in Rochester, I've seen 2 movement disorder specialists locally as well as a specialist in RLS, I've been diagnosed with SFN and RLS and switched to a dopamine agonist patch which controls my worst symptom.

Now I'm back with my original general neurologist because he's followed me for 3 years, he's respectful and he's the most thorough of all I've seen.

So, my suggestions would be to keep advocating, don't give up, find a neurologist who respects and listens to you, see a movement disorder specialist and a rheumatologist if you haven't already. Be tenacious. You can come out on the other side!

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@patriciajean

Hi, Christine – yes, I can see your messages. I'm sorry you don't have the answers that you need. Have you seen a neurologist and a rheumatologist? When you say "all tests" does that include a brain MRI and/or a DaTscan? Have you had autoimmune testing?

It is frustrating to have to deal with symptoms without knowing their cause. I've learned that not every disorder can be definitively diagnosed and I've seen a plethora of doctors. Most were helpful in some way, a few were dismissive – even a neurologist at Mayo Clinic. He said, "If you hadn't been on Levodopa-Carbidopa, I may have been able to give you a diagnosis." Well, neither he nor his staff ever suggested I stop taking it before I spent $3,000 I could ill-afford to get to Rochester to ask for a diagnosis!!! Every time I asked him what could be the cause of one of my symptoms, his answer was always, "Well, the test was normal." I said, "I have trouble emptying my bladder, I have to really work at it and keep trying, it takes several tries to get it empty when I get up in the night or first thing in the morning." He said, well the sonogram shows your bladder is empty." When I said sometimes my blood pressure drops when I stand up, or have been standing awhile, especially in the heat," he said, "Well, the tilt-table test was normal." He could give me no possible cause for my tremor, SFN, RLS, weakness, fasciculations or anything else, because, "the DaTscan was normal." I asked if the DaTscan was reliable for diagnosing a Parkinsonism and he said, "Well, it's true, no test is 100%." Which means that his constant, "Well, the test was normal," did not get me any closer to a diagnosis and that was the entire point of my expensive journey. My husband tried to explain to him that he can feel my muscles twitching all night when I'm asleep, as if my nervous system is constantly misfiring and to that he said, "The EMG was normal."

He did offer to refer me to a pain clinic, assuring me that, "Pain disorders like fibromyalgia are quite real," even though pain wasn't one of my symptoms. Even being dismissed in this way taught me something. It taught me that there are neurologists who are not good at their job.

Many neurological disorders are diagnosed clinically – not through testing. My (first) local general neurologist diagnosed with with a parkinsonism after seeing me clinically every 3 months for 2 years, by ruling out other diseases through testing and by my positive response to Sinemet. Since then I've gone to Mayo Clinic in Rochester, I've seen 2 movement disorder specialists locally as well as a specialist in RLS, I've been diagnosed with SFN and RLS and switched to a dopamine agonist patch which controls my worst symptom.

Now I'm back with my original general neurologist because he's followed me for 3 years, he's respectful and he's the most thorough of all I've seen.

So, my suggestions would be to keep advocating, don't give up, find a neurologist who respects and listens to you, see a movement disorder specialist and a rheumatologist if you haven't already. Be tenacious. You can come out on the other side!

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Yes I had all those tests and all said normal. They tried telling me this is all in my head and I'm making this up that not one test is showing anything abnormal. Like I would make this horrific way of living up.. I have a million dollar work up and still nothing is showing.. it's hard to advocate for yourself when they will not listen. Once they put on there notes it's anxiety then you are pegged for life.. I showed the Dr the swelling the tremors the weight loss which now is 50 pounds. The unsteady gait etc. Still says nothing is wrong..

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@christine6682

Yes I had all those tests and all said normal. They tried telling me this is all in my head and I'm making this up that not one test is showing anything abnormal. Like I would make this horrific way of living up.. I have a million dollar work up and still nothing is showing.. it's hard to advocate for yourself when they will not listen. Once they put on there notes it's anxiety then you are pegged for life.. I showed the Dr the swelling the tremors the weight loss which now is 50 pounds. The unsteady gait etc. Still says nothing is wrong..

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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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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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