RLS or something else? Part 2

For everything and anything else not covered in the other RLS/WED sections.
SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Thu Jun 30, 2016 12:21 pm

Hello! Still trying to figure out what is wrong with me. All my GI tract biopsies were completely normal--no sign of celiac disease, no inflammation, etc. I am still suspicious of a food sensitivity, but I just finished a course of antibiotics yesterday and I didn't want to start eliminating food groups at the same time I finished taking a med. I want to be on a stable course of meds for at least a few weeks before I try dietary changes. And I go to Johns Hopkins in two weeks to see one of their neurologists. So I'm putting the food sensitivity theory on hold for the time being.

Anyway, I really stopped by here to let you know that I had a sleep study last night. Two of my doctors were concerned that my fatigue could be related to sleep disorders, perhaps sleep apnea. I won't have the results of the study for several days, but the technician told me that I had a fair amount of leg movement while I was asleep, consistent with PLMD. He is not a doctor so he can't provide a diagnosis, and he was careful to caution me that he doesn't know if I had a sufficiently high number of leg movements to get a formal PLMD diagnosis, but I never knew that I had any leg movement at all while I was asleep. So the plot thickens!

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Thu Jun 30, 2016 10:02 pm

Interesting!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Sat Oct 22, 2016 1:17 am

Hello all! Long time no talk. :) I've had a million tests since I last posted in June. The four neurologists I'm currently seeing all agree that I have an overactive immune system and I have inflammation in my central nervous system, but so far I still don't have a diagnosis.

However--in August I saw a movement disorders specialist (neurologist). He listened to my story and watched videos of my body spasms and facial spasms. In 15 minutes he gave me a tentative diagnosis of paroxysmal nonkinesigenic dyskinesia (for the spasms only, not my other symptoms). Basically, something goes wrong in my basal ganglia and causes me to have spasms when I am awake. Spasms are more likely to be triggered when I am tired or I am in pain, and since my fatigue and pain has always been most severe in the evening, my spasms were happening in the evenings. At their worst, I was having a few hours of full body spasms most nights. The doctor prescribed carbamazepine, and within two days the spasms were almost gone. I thought maybe it was a fluke, but it's been almost two and a half months, and while the spasms have returned a little, they're much milder and infrequent, and most nights I don't have any. So the diagnosis seems to have been as confirmed as it can be.

I asked this neurologist about my three month bout of what seemed like RLS, which is what brought me to this site in the first place. We will probably never know exactly what caused that, but he feels it was probably RLS or a close cousin, caused by whatever is affecting my brain. And like almost all my other symptoms, whatever was causing the RLS-like issues changed and the sensations went away.

I hope you are all doing well. If anyone is looking for a great movement disorders specialist in northern Virginia, please message me and I can give you his info.

Rustsmith
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Re: RLS or something else? Part 2

Postby Rustsmith » Sat Oct 22, 2016 2:38 am

SnappyK, good to hear that you finally found someone who had an idea of what was causing your problems and that the treatment with carbamazepine is working. It must be a great relief to have the spasms almost completely gone.

And thank you for coming back to let us know about your success. And finally, if what you were experiencing was RLS, I hope that your treatment keeps it at bay and that it doesn't force you to visit us again. Of course, we would always welcome an update from you.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Sat Oct 22, 2016 5:12 am

SnappyK - so happy to hear that you met this doctor - how fortuitous. And that the meds are working - so wonderful.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Sat Oct 22, 2016 7:47 am

Snappyk, what a great result and thank you for your update.
Information such as yours is very welcome to us..... all information makes a broad base for those seeking to learn about their condition and what may (or may not) be RLS.
Please do keep in touch.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Sat Oct 22, 2016 1:14 pm

Thanks to all of you for your kind words. The dyskinesia diagnosis I got is extremely rare, with a prevalence of around one in one million. I finally got it because I had my husband take videos of me having the body spasms, and I made my own videos of the facial spasms. Then I took an iPad with the videos loaded onto it to all my doctor appointments. My GP and two neurologists I trust all said, "I don't know what that is, but you should see a movement disorders specialist." I think he was the seventh neurologist I'd seen this year (so far there have been nine).

My point in telling you all of this (besides a video being worth a thousand words) is that you should absolutely get a second opinion, or a third, or in my case, a seventh. :) Of the nine neurologists I've seen, three absolutely had no idea what they were talking about, two knew what they were talking about but didn't have ideas to help me, and the other four have been truly helpful. I've become horrified by the state of the medical profession because I've had doctors tell me things that are not only completely wrong, but truly dangerous and even life threatening. I've also had two radiologists miss white matter lesions on my brain MRIs and two radiologists find them. So the neurologists and the radiologists are roughly 50/50 when it comes to doing their jobs well.

What I've learned this year is that I have to research everything myself. Now I read journal articles and medical textbooks to verify what the doctors tell me and to learn what the latest studies say. And I pore through forums and websites to look for anything that might give me a new idea of what's wrong with me or what tests I should ask for next. I can't tell you how many hundreds of hours I've spent on this, but no one else was going to. Hopefully I'll be saving my life.

Thanks again to all of you for your support over the past year and a half. I will definitely be back to let you know what the next chapter in this story holds. I just love those "medical mystery" stories except for my own! :)

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Sat Oct 22, 2016 6:02 pm

You have been capable of researching, questioning the professional experts and reaffirming a diagnosis. Well done.

I am so sorry for those sufferers of any disease who are unable to do this and have to take the 'experts' at face value.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: RLS or something else? Part 2

Postby badnights » Mon Oct 24, 2016 7:34 am

First off I have to say how happy I am for you, that the worst of it seems to be under control, and explained, even though some parts remain mysterious.

Your observations about medical care providers are very well said and very appropriate. I think the fundamental mistake most of us make is to assume that people in "other" professions know what they're doing. Doctors, judges, engineers, pilots, national leaders - they're just like everyone else : some are competent, some exceptionally good, some careless, some incompetent. I tended always to think that the people who made the rules knew more than I did, til I started working in government and realized it's just people like me who make up policies. Fallible people, some good at what they do, some BSing their way through, all sorts. I didn't carry the observation over to doctors until this disease nailed me, and I had to go through what almost everyone else here has -- - - knowing more about my disease and how to treat it than my doctors did, and being harmed by their well-meaning ignorance. Thank goodness I never had a malicious or unfriendly one. Well, one unfriendly one!

I'm looking forward to the next chapter of your medical mystery. I hope it's full of happy resolutions.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Thu Apr 27, 2017 12:29 pm

Hello again to all of you! It's been six months since my last update and I hope you are all doing well. I've been through lots more tests and seen lots more doctors during that time, and I finally have an answer...sort of. Four doctors have now concluded that I've have mild MS since 2010 or earlier, but apparently it's been in remission for several years. But...it may have caused increased inflammation in my central nervous system. Then I got older...gained weight...became more sedentary...ate worse...etc., and that may have increased the inflammation levels more. Then, for unknown reasons, a few years ago my body started reacting negatively to dairy consumption. Dairy made my inflammation much worse, and that aggravated/interfered with the white matter lesions I have from the MS, which caused the symptoms. At least that's the theory. I've been dairy free for almost a month and the symptoms are all gone. It's freaking amazing.

It may explain why I was having RLS-like symptoms for those three months when this whole thing started. It probably was RLS, according to my movement disorders neurologist, but it was only happening when my inflammation levels were highest, which was the evenings. By the time I was going to bed for the night, I hadn't eaten in several hours, and my inflammation levels were dropping. That's why the RLS didn't bother me overnight.

I never thought the solution to over two years of misery would be to give up dairy. Ultimately what I've been dealing with has been caused by a combination of several factors, but dairy is what drove things over the edge. Anyway, I wanted to let you all know what happened, especially in case someone comes here in the future having RLS-like symptoms that go away at night. I don't mean to imply that they would be reacting adversely to dairy, but rather that inflammation may be the core of their problems.

Thanks again to all of you for your support over the past few years. It's been a crazy journey for me, and hopefully what I've learned can help someone else in the future. If any of you have any questions or need additional info from me, just ask.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Thu Apr 27, 2017 8:00 pm

Thank you so much for stopping by and providing some closure.

No dairy would be an easy choice for me! And, inflammation definitely is correlated to RLS-like symptoms. We do not know if it is indeed RLS, or something similar or a variant. But, that it can be resolved by reducing inflammation is a wonderful thing.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: RLS or something else? Part 2

Postby Rustsmith » Fri Apr 28, 2017 12:28 am

Four doctors have now concluded that I've have mild MS since 2010 or earlier


Good to hear that you appear to finally have a diagnosis, but sorry to hear that it is MS since even a mild case of Relapsing/Remitting MS will continue to cause more damage to your nervous system with time. Therefore, I hope that your doctors have discussed MS treatment options with you to minimize the number of relapses and extend the times in remission. There are a number of choices for the treatment of early stage R/R MS that were not available to my wife when she was in the early stages of that disease.

Also, always keep in mind that MS is one of the causes of secondary RLS, so don't be afraid to request treatment of the RLS symptoms, even if they are a side effect of the MS. MS is tough enough without also having to deal with RLS on the side.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

yawny
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Re: RLS or something else? Part 2

Postby yawny » Fri Apr 28, 2017 1:46 am

SnappyK, your story and amazing tenacity are fascinating to me. I wanted to suggest something that I've learned about in my own health quest, Low Dose Naltrexone (LDN). Apparently it is very effective for treating MS, but people use it for so many other conditions. I will add it as soon as I can get to a place of adding in another new thing to my regime. I have to add one thing at a time to check for side effects (it's a painfully slow process!). If you'd like more information on LDN, here are a few links I've found very informative. And there's some discussion of it here on the board if you do a search. Best wishes to you.

If you decide to try it, mailorder through Skips Pharmacy (skipspharmacy.com) in Florida is considered the gold standard for LDN prescriptions. It costs about $20/month.

http://www.lowdosenaltrexone.org/ldn_and_ms.htm

https://www.ldnresearchtrust.org/conten ... d-gluck-md

https://chriskresser.com/low-dose-naltr ... e-disease/

http://articles.mercola.com/sites/artic ... eases.aspx

https://www.ldnresearchtrust.org/conten ... elsegood-0

https://www.amazon.com/LDN-Book-Little- ... naltrexone

badnights
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Re: RLS or something else? Part 2

Postby badnights » Sun Apr 30, 2017 10:26 am

Fascinating, SnappyK! Thanks for posting here about it. I am disappointed to hear that you have MS, but hopefully as Steve says you can keep it in remission as long as possible, and at the same time keep the RLS/WED away.

I am not actually surprised at the dairy story, because of my own experiences with dietary changes causing a big improvement in my WED/RLS over 6 months or so.

I stopped eating gluten and dairy about 2 years ago. I also started eating an insane amount of vegetables and stopped processed foods and added sugar, and aout a year ago, I added raw (unpasteurized) fermented foods. My doctor thought I had SIBO, which seems to have been resovled by the diet changes; my guts are certainly happier and I no longer get sudden stabbing pains after I eat. Probably my guts were damaged, and molecules that passed through into my bloodstream prompted inflammatory responses, which set off the WED.

There have been some indications that WED is related to inflammation, but the link is not really understood. My guess would be that excessive inflammation would set off symptoms in someone who had the genes for it.
Beth - Wishing you all restful sleep tonight
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viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Mon Oct 23, 2017 8:21 pm

Hey there! I'm back again. :) Seems like about every six months I have another update for you. After I went dairy free in March, I started slowing lowering my meds (under doctors' supervision). At lower doses of my meds, I started experiencing some pain and some body spasms, mostly in my legs. I stopped lowering my meds and wondered if perhaps I had another food issue besides dairy. I went on an elimination diet and felt much better in a day, and through the process of elimination I discovered my immune system is reacting oddly to...gelatin. The fish oil capsules I was taking every day were the biggest culprit. I'm now almost gelatin-free (just a little in one of my meds) and as of last month I'm completely off my neurological meds. I haven't had any more body spasms, and I only experience a small amount of pain occasionally if I eat something with a little dairy or gelatin in it.

For the first time in many years, my inflammation levels are normal. I no longer have the fatigue that had bothered me for 10+ years. It's absolutely amazing. My MS is still in remission and since I've been feeling better and eating better, I've lost 55 pounds. I cannot stress enough how invaluable an elimination diet can be. I'm sure very few people have the same problem I had, but by restricting my diet for just a few days (brown rice, beans/lentils, fruit and vegetables, fish) I found out food was the answer. It is worth a try.

I hope all of you are doing well.


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