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 » Mon Mar 14, 2016 4:57 pm

The B12 reaction was a coincidence. Oh well. I am still experiencing new symptoms, including bouts of muscle twitching in my arms and upper body that are noticeable enough that my GP commented on them. All my bloodwork has come back normal, so the next step is brain and thoracic MRIs with contrast. Most likely cause is multiple sclerosis. I will keep you posted.

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Re: RLS or something else? Part 2

Postby badnights » Mon Mar 21, 2016 9:36 am

The whole nutrition thing is hard to figure out, there are so many variables. Dysbiosis is being blamed for everything these days, but some diet changes might be worth pursuing. I wouldn't know what precisely to recommend, but you could maybe investigate the effect of diet or gut microbes on chronic pain or neurological disorders. I had a remarkable improvement in WED symptoms from diet changes.

Just trying to think of something that do-able, that might provide a new avenue of investigation and hope.
Beth - Wishing you all restful sleep tonight
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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Thu Mar 24, 2016 10:49 pm

I'm on the brink of an actual diagnosis. I had a brain MRI and the radiologist found two white matter lesions, both consistent with multiple sclerosis. My symptoms have grown and changed significantly since early February, and MS was the most likely explanation for the whole range of them, so the MRI findings were not a surprise. If anything, they were a relief because it could have been a worse condition.

We also found out that when I had a brain MRI in 2011 for unexplained vision problems and the sudden onset of severe depression in 2010, the same two lesions were there, but that radiologist missed them. Odds are that the RLS-type symptoms I had in early 2015 were not actually the first signs of the MS, but rather the vision issues and depression were. I have not had the RLS-type sensations in months, although I still have foot and leg pain, which tends to bother me primarily in the evenings. My current list of symptoms has over 20 issues, with foot and leg pain being just one of them.

So, while I certainly wouldn't think, ah, I have something like RLS, maybe it's MS?, it is worthwhile considering other symptoms you are currently having or have had in the past. MS presents with incredible variation from person to person, but now I know that vision problems are very often the first sign, and that many symptoms only last a short time and then disappear for months or years. MS tends to affect women more than men and to be identified in a person's 20s or 30s. I was 38 when the depression and vision issues started.

Of course, it's really easy to piece all of this together in hindsight. At the time it seems like these are all unrelated conditions. For the months where the RLS-type sensations were my only symptom, it was logical to think that I might have RLS, except that I wasn't having pain at night. And there have been studies that have shown that RLS is much more common with MS patients than the general population. So maybe I did indeed have RLS for a short time, and when I went to sleep, which reduces or resets 95% of my symptoms, it knocked out the RLS until the next evening.

I am hoping to get a firm diagnosis when I see my neurologist on Tuesday, but odds are I'm not going to get one. MS is a diagnosis of exclusion, and so far there is no evidence that it's anything except MS, but there can always be more tests. Whenever I get a diagnosis, I will be sure to update this thread with what I'm told, and I will ask my neurologist about the relationship between MS and RLS.

If anyone has any questions for me, now or in the future, please don't hesitate to send me a message. I would be very glad to help anyone who is facing a similar situation.

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Re: RLS or something else? Part 2

Postby ViewsAskew » Fri Mar 25, 2016 1:24 am

SnappyK - thank you so much for coming back regularly and documenting this. It should be very helpful to others in the future.

I hope you have a firm diagnosis soon - good or bad, at least when we know we can stop the worry and wondering and just get on with what matters and what will help.
Ann - Take what you need, leave the rest

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Re: RLS or something else? Part 2

Postby Rustsmith » Fri Mar 25, 2016 2:09 am

SnappyK - My wife (and I) have been living with her MS for over 45 years now, so what you are describing sounds pretty textbook for MS to me. Also, I can completely understand your comment that it is a relief to get the MS diagnosis. That can be hard for someone who has not been involved in the years of unknown problems caused by undiagnosed MS that you have to go through before you reach this point. My wife spent a week in a psych ward as a teenager because the doctor thought that her complaints were those of a "hysterical" teen.

Your combination of the variety of symptoms, the early optical issues, the foot and leg pain and the MRI lesions all add up. It is interesting that you said that MS diagnoses typically happen in the 20's or 30's. When my wife was diagnosed she was 24 and they told us that the typical age was in the 40's and 50's. Of course, there were no MRI's at that time, so a patient had to be pretty bad to justify throwing every neurological test in the hospital at a patient when the expectation that they would all be negative.

Also, understand that it is entirely possible to have Secondary RLS as a result of the MS. Assuming that you have MS, then that just increases your risk of also having RLS. Fortunately, a lot of the medications used to treat the symptoms of MS also work for RLS. As I have gone through my journey of RLS meds, I frequently have been asking my wife about side effects associated with my meds because she has used them for her MS in the past.

Finally, if you have any questions about MS, please feel free to send me a PM. We have been living with MS for so many years that we have seen how the research has progressed and how there are MS specific treatments available now that were not available back then. Although it is not possible to know where your assumed MS is going to take you, I can pass along a few bits of advice that may help you get the most out of your future.
Steve

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Sojourner
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Re: RLS or something else? Part 2

Postby Sojourner » Fri Mar 25, 2016 5:44 am

This may or may not be appropriate here or maybe should be a separate topic. There is a rare disease called Neuromyelitis Optica (NMO). It is often referred to as Devic's disease and by some other names It is often confused with MS and because it is a relatively rare disease there are few doctors qualified to diagnose let alone treat it. I bring this up as my "better half" spent in the neighborhood of five years being told you have MS by one specialist then being told you don't have MS by another specialist. As I said, this went on for about 5 years and was finally put to rest by a visit to Mayo (or the Cleveland Clinic) and even then that did not come easily. Most doctors have not heard of it or, if they have, they have never treated a patient with it. As many of us do with RLS, with every new specialist we see we bring them a small book about NMO. It would be fair to say that we know more about this disease than all but one of the specialists we see. Because most related specialists have agreed to treat the related NMO symptoms all doctors have sincerely been appreciative of the information. We dropped off the book prior to our initial visit to one of the "newer doctors" and were very delighted when he came into the treatment room holding the book and prefaced his introduction with a smile and by saying that he had spent a lot of time the previous weekend doing some reading. And, it was obvious he had. It's nice to have that happen once in a while. Like MS, there is no cure and much of it is symptom management. In that respect, we have had to educate virtually all specialists such as urologists, rheumatologists, dermatologists, etc. about the disease. As with MS, there can be a lot of collateral damage and associated diagnoses such as Lupus and others. If left untreated, it can be extremelty debilitating and even when treated, like MS, is significantly life altering. I post this in the hopes that if anyone is getting serious head scratching or conflicting second opinions from their neurologist(s) regards MS you might mention NMO to him/her. I'm sure the "think horses not zebras" adage applies but nevertheless…

one link: http://rarediseases.org/rare-diseases/n ... is-optica/


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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Tue Mar 29, 2016 11:33 pm

Thanks to all of you for your responses. Just a quick note to let you know that my skin biopsy showed that I have a mild case of non-length dependent small fiber neuropathy. My neurologist is treating this as somewhat of a diagnosis but she is continuing with additional testing to rule out possible causes of the neuropathy and thinks that ultimately the neuropathy will be deemed idiopathic. I disagree with her because I have several symptoms that the neuropathy diagnosis would not encompass, such as hyperreflexia in my legs, and these symptoms were not present six months ago. This does not mean that I don't have neuropathy, but that something else neurological is causing it. Anyway, next week I see a local MS specialist, and I am in the process of talking to Johns Hopkins about a neurological consultation. (I live about a 90 minute drive from Hopkins.) I'll keep you all posted as my medical odyssey slowly trudges along.

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Re: RLS or something else? Part 2

Postby ViewsAskew » Thu Mar 31, 2016 6:22 am

SFN can easily be confused for RLS - if you indeed have it, you are at least the third or fourth person here to find that out. Interesting.
Ann - Take what you need, leave the rest



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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Sun Apr 03, 2016 10:55 pm

It's time for the latest chapter in my never-ending story! I saw my GP yesterday for an unrelated minor medical issue, and she ended up spending 45 minutes with me going over all my results and what the neurologist said. She disagrees with the neurologist's opinions and thinks that non-length dependent small fiber neuropathy is definitely not the whole story. She does not favor a particular diagnosis, but she does not think that MS has been ruled out by any means. Since it could be a month or longer before I get to see a doctor who will actually be prepared to treat me, and the pain medicine prescribed so far has been completely ineffective, my GP got the bright idea to try me on a standard course of steroids (prednisone). By the first night 95% of my pain was gone! I'm on the fourth day now and I'm at half the original dose--and my RLS-like symptoms are coming back! Haven't dealt with them in several months. I am also getting some foot pain back. I'm absolutely amazed that the steroids were so effective, especially when you compare the dose I'm getting with the dose an MS specialist would prescribe. But it's the first relief I've gotten from the pain in a long time.

This week I am seeing five doctors, all for different things, with the last one being the MS specialist. Will keep you all posted...

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Re: RLS or something else? Part 2

Postby Sojourner » Mon Apr 04, 2016 6:25 am

Glad you at least have had some relief. I'm hoping that everyone can at least get to the point where the left hand knows what the right hand is doing. It's too bad that "team meeting/conferences" between medical providers are not particularly viable unless you go to someplace like mayo where that sort of thing is sometime accomplished. But, lack of communication even though unintentional is just another reason why we all need to be proactive in our own care and not bashful about asking questions etc. Not easy to do particularly in smaller locals where an abundance of qualified providers are in short supply.

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Re: RLS or something else? Part 2

Postby ViewsAskew » Mon Apr 04, 2016 7:02 am

So glad it helped with the pain...not so glad you are getting other symptoms back, though it all will likely help in the diagnosis.
Ann - Take what you need, leave the rest



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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Sun Apr 10, 2016 12:00 am

I had six medical appointments this week. I saw an MS specialist, who concurs with the first neurologist that I have non length dependent small fiber neuropathy (SFN) and that I do not have MS. My understanding is that MS and SFN are quite similar symptomatically, but MS damages the central nervous system (brain and spinal cord), and SFN damages the peripheral nerves. He has no explanation for my symptoms that are not associated with SFN, and he has no explanation for the MS-like lesions in my brain. I'm starting to accept that SFN may be an accurate diagnosis, but I still think there is more to the story. Something is causing the SFN and it's very likely to be autoimmune. Both neurologists I've seen (who are in the same practice) are offering me no treatment at all! The first one said to come back in a year for a recheck, and I calmly but clearly told her that was not acceptable. So she referred me to her colleague, the MS specialist, who wants to see me again in six weeks. But all he offered in terms of treatment was that I should take extra vitamin D (I'm already taking 3000 units a day) and I should take a Pilates class. So frustrating. I can barely walk for 10 minutes because the pain gets so bad and I'm severely fatigued for hours afterwards, and he wants me to take a 60-minute Pilates class? Crazy. Exercise can certainly help me to feel better, and extra vitamin D arguably might help a little, but neither is going to fix the underlying cause or stop the progress of the SFN.

So I'm seeing a rheumatologist to be further evaluated for autoimmune conditions, and I am sending my newest medical records to Johns Hopkins on Monday morning so they can start reviewing them. I'm scared to death that I'm going to end up dead sooner rather than later from whatever is going on. Things have progressed to the point where I have swallowing issues a few times a week, and a week and a half ago I finally aspirated a mouthful of fluid (lemonade, of all things). I coughed up a lot of it but enough must have remained and I've had a terrible cough for a week since. My GP says it's from aspiration and I have to just let my body fight it off. I'm worried that next time I'm going to get pneumonia or choke to death.

I'm getting off topic here, sorry. I would love to hear from any of you with SFN. Mine seems to involve sensory, motor, and autonomic functions, and it's getting steadily worse. I hope I can find a doctor who will help me before too much damage is done. And from what I understand, SFN and RLS are frequent companions, so it turns out I might have RLS after all.

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Re: RLS or something else? Part 2

Postby ViewsAskew » Sun Apr 10, 2016 3:30 am

SnappyK- so sorry you are still stuck and that things are progressing so quickly. I do hope someone can figure this out soon.

I seem to recall that many people - not sure percentage, but think about half - with SFN have another condition and it occurs secondarily to it. The rest are called idiopathic. Given the nature of your symptoms, it sounds as if you may be in that first group rather than the second. It's a lot like RLS in that way - around 50 percent is primary and often hereditary (sometimes called idiopathic) and the rest it's secondary to diabetes, pregnancy, MS, and other conditions.
Ann - Take what you need, leave the rest



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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 » Thu Apr 21, 2016 10:29 pm

I've gotten all my test results back from the past two weeks, and every single test was normal. I was most surprised that the testing from the 24-hour urine collection was normal across the board: catecholamines, epinephrine, norepinephrine, dopamine, metanephrine, normetanephrine, and VMA. I was really thinking it might be an issue with one or more of those, because I've been wondering if there is a hormonal component or something similar to my symptoms. Hormones might explain why the symptoms get better while I sleep and get worse during the course of the day. I was also wondering if my dopamine would be out of whack because I am on Prozac (80 mg a day, which is a high dose), Buspar (15 mg a day), and Deplin (15 mg a day) for depression and anxiety issues. I've been on those meds for several years and was also taking Ability (5 mg a day) until about a month after my RLS-like symptoms started.

I had a good brainstorming session with my GP this afternoon, and she is thinking that many of my symptoms may be due to an excess of serotonin. I don't seem to have full blown serotonin syndrome, but I do have a history of medications building up in my system over time and causing strange reactions. So my GP has asked me to drop some of my vitamin supplements and avoid herbal tea and other drinks as a first step. If that doesn't help, then I may try lowering my Prozac slightly, but only under close supervision to ensure my depression doesn't return.

From what I've read in the past few hours, there tends to be an inverse relationship between dopamine and serotonin (when one goes up, the other goes down) and issues with dopamine are thought to perhaps cause RLS? I wonder if lowering my serotonin is going to raise my dopamine and cause me a new set of problems.

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Mon Apr 25, 2016 11:07 pm

I saw the neurologist again today and he still isn't being very helpful. He acknowledges that I have a wide range of symptoms, some of which he knows are not caused by neuropathy, but he does not offer a reason for them, and until I pressed him, he offered me no treatment. He keeps trying to convince me that if I just do yoga a few times a week, all my pain will go away. It would be really funny if I wasn't so miserable. Last week I fell four times while either slowly walking inside my house or standing still. It's as if my right leg is not going (or staying) where I want it to. The neurologist says it's because I'm losing sensation in my foot. Not sure how doing yoga is going to restore destroyed nerve fibers...anyway...

I practically begged him to do *something* because I'm hardly able to work much at all nowadays and I'm self employed. I have no sick time etc. to use when I cannot work. He finally conceded that maybe medication would help me, so I'm starting on gabapentin tonight. I have confirmed appointments with Johns Hopkins neurology staff in mid-July, so I'm hoping that the meds may give me some relief from now until I go to Hopkins. But from what I've read, gabapentin is not effective for most people with this form of neuropathy (assuming that's what I even have). So while I'm hopeful for improvement, at this point I am expecting my decline to continue.


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