I have been diagnosed with all three neurological disorders and have learned several things that might be helpful to other sufferers.:
1. These are neurological disorders and are best treated by neurologists. Most GP’s and PCP’s are not current on best practices for treatment of neurological disorders.
2. I needed a referral from another MD to see a neurologist; medical records were requested to insure that the specialist felt he could treat my conditions.
3. I had to change neurologists before finding the right one for me. I am now seeing my second neurologist; the first one was helpful treating and diagnosing migraines, but he was not current with best practices for these conditions. Not only did the new neurologist test for ferritin level (mine was 24), he also tested for levels of Vitamins B-12 and D-3. Both levels were low, and he prescribed OTC meds for those. He also changed one med I was taking to treat essential tremors.
4. This neurologist also gave me information on rebates for Neupro (which he prescribed after seeing my history of taking increasing doses of gabapentin, duloxetine, ropinrole, carbidopa-levodopa, and amitriptyline to no avail. He made referrals for support groups for my disorders and suggested I visit reputable websites to learn about the disorders.
5. Googling the names of the disorders brought a wealth of information from reputable sites such as Medline (Nat’l Institutes of Health), Mayo Clinic, Cleveland Clinic, RLS Foundation, and Sleep Foundation. I found them to be very helpful.
I still have some sleepless nights, some painful movements, and an allergy to the Neupro patch. The patch (for which a dermatologist prescribed an anti-fungal cream) is worth the discomfort because it is by far the most effective treatment I have had.
Gald to hear things are improving. I noticed you mentioned Duloxitine - that particular drug made my RLS 100 times worse - be very careful taking antidepressants, (apart from a lot of problems with their efficacy, side-effects and manipulated research), they can exacerbate RLS.
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I know now! Neurologist #1 had prescribed amitriptyline AND duloxitine together and then added ropinirole! I ended up at an urgent care center for a "medicine adjustment"; that's when I began looking for another neurologist!
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I know there is a hell of a lot for Drs to know but Jesus!
I always do my own research before I go near a Dr and then research any drug given after. I only learned through here that you come of dopamine agonists slowly - my GP stopped them overnight, (and I think he is quite a reasonable Dr).
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Hi raffs - Me too - When my doc recently confirmed my RLS (which I have known for years that I have), she prescribed Mirapex... I took a look at it and it scared the crud out of me.. Between the augmentation, the horrible side effects weaning off of the drug, and the massive weight gain, I rejected it. I have a hard time even losing 10 pounds.. I talked with the pharmacy and asked them to reshelf it since I had not picked it up and they did. Thanks goodness.. Looking at new meds if a good idea as long as you understand what you are reading... =)
hopkinsmedical.org is another excellent site with some of the leading experts in rls treatment on there. also rlshelp.org - Dr. Buchfuhrer's website.
Be careful with your use of neupro not to let the dose gradually increase. It is a dopamine agonist and can cause problems if not monitored carefully. Far better to reduce the dose and look for an alternative source of relief, temporarily, if you notice the patch becoming less effective, than to increase it. With dopamine agonists, the condition will always eventually outstrip the drug.
Neurologist#2 is talking about decreasing the strength of the patch; I'm currently using 4 mg., Ferritin level increased from 24 to 140 with 325 mg. ferrous sulfate three times a day over a period of months, and he mentioned decreasing when it reached 75. I imagine he will decrease the same way he increased it...3 mg for a couple of weeks, and 1 mg. for a week or so.
Thanks for info about rlshelp and hopkinsmedical.org. I will add those to my bookmarks.
I would also caution you about decreasing the ferrous sulfate when you reach 75 - that’s not high for someone with RLS. He can test to be sure it’s OK for you to go higher with no ill effects. I’ve just started on ferrous bisglyscinate and my reading was also 75. I hope for improvement when it gets to about 100. Maybe others here can comment on what iron level they reached; knowing that might help us, even though we all different.
I will see neurologist in three weeks and discuss it with him. From reading on this site, I'm aware that even 140 (my level in June) is low for some people with RLS. Thanks for the suggestion.
My ferritin levels have been 24, 54, and 140 (completely bypassing 75) in the past year with neurologist #2. The 140 level was measured in July; I corresponded with him by email. He told me to stop ferrous sulfate until I see him next month. I am trying to add dietary iron in the meantime and will address the matter with him next month. Thanks for your concern.
I seem to be having the same skin difficulty all since starting neupro. On my lower left calf, upper right thigh and even in my bottom!! Same thing itchy irritated skin. Is that what you have?
Mostly my irritation is confined to the area directly under the patch; I know it may slow the absorption of the medicine, but the only relief I have is a gel pack that I keep in the freezer. After a shower and moving the patch, I put the anti-fungal cream on the very red previously-patched area and other red areas which are very slow to disappear. Occasionally, when the RLS keeps me awake, my entire body seems to itch like you mentioned. The relief from the patch overcomes the discomfort of the itching!
Neurologist #2 prescribed a beta blocker, propranolol; he began with a low dose and increased it to 60 mg. ER. It has been very helpful with the tremors. (He did withdraw lisinopril, 2.5 mg a.m and p.m. that I had been taking for blood pressure.)
That's the one I'm taking for my tremor as well. I researched that one myself and luckily my doc went with my suggestion. It's lowering your blood pressure though (which I am good with), so you need to watch out for that - if you get dizzy more than before, you might need to review the propranolol.
Wow - That is a lot to deal with. I am happy for you that you are getting better...
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Thank you. Until 7 years ago, I was very healthy (only occasional RLS) until I was diagnosed with an autoimmune disorder; I have been taking prednisone (now very low dose) since. I've wondered if there is some relationship between movement disorders and long-term steroid use; steroids have affected so many areas of my life these 7 years...
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I think I got Sjogrens probably in 1992, allergies as a kid, asthma in 1988, etc., etc. It seems to me that once you get one Autoimmune disorder, there will be more following. Even though I have several in remission, new ones continually show up.. It does get tiring... And like you, I was major active at the time - I traveled in my job, worked 55 - 60 hours a week, never slowed down... BUT, I am pretty happy that things for the most part are pretty good - I just had to reset my expectations a little.. =)
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Reset expectations is a good way to say it! Hope that resetting is helping you get past these hurdles.
I believe Theraworx Relief is used by some to try to help prevent muscle cramps and spasms. Ingredients includes magnesium sulfate, colloidal silver, citrus grapefruit extract, aloe, allantoin and vitamin E. I would not think it beneficial for RLS sufferers.
Thanks for the suggestion. I read on the packaging about the cramps and spasms and decided it wouldn't help me, but I may be desperate enough to try it with your comments!
I am a newbe to this forum . I have had RLS for a very long time. Just recently I began to have severe neck pain and thought it may be RLS not allowing me to get the restorative sleep I need----always tensing up through night.
You seem to know or have learned a lot about neurological conditions. Great reading your post.
So far here is what I have tried for this condition:
First Neurologist did tests for muscle control----Waste of time. Se told me neck problems were from arthritis and a disk problem--told me to get rehab did and nothing . So guess what she said I need surgery. GRRRRRR!
Then went to a sleep specialists , had sleep test diagnosis moderat to severe RLS. I had 440 tremors during 5 hour of sleep and it equated to about 2 hours of restorative sleep.
Hopeful, I went on Horizant --new gabapentin drug I started at 300mg for two weeks and upped it to 600mg now for two more weeks. No Rls like before now I just feel like an electric jolt gets me from time to time.
Biggest problem is my hair is thinning and I do not see my NEW Neurologist for 2 more weeks also will see the Sleep specialist at that time.
Question for you--Could hair loss (top of Head) be from the Horizant and if so should I stop now or continue on for the 2 more weeks. I have supplemented with Folate as recommended for the Hair thing
I would appreciate your input if possible. Your post has been one of the most informative on this condition and Neurologis and sleep specialist I believe, as you said, is the way to
go. I am also thinking about going to my Derm for steroid shots in my scalp for hair.
I am not familiar with Horizant and can't venture an opinion. All I can say is good luck with the plan you are following. I'm sorry about the snowball effect that many of us are experiencing with adding or withdrawing meds and the side effects/interactions that occur with each. It can be confusing and frustrating.
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Co-codamol any good for RLS or PLMD?
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Neurologist for RLS- frustrated 
