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 Jan 28, 2016 12:51 pm

Thanks again to all of you for your support. The MRI confirmed that I have spinal cord compression caused by three bulging cervical discs (cervical spondylosis with myelopathy). Fortunately, my spinal cord compression is classified as mild, and its progression should be slow, so I am not in imminent danger. We are taking a conservative approach and trying physical therapy first, then perhaps injections, and only considering surgery if I continue to worsen. I am still in pain most of the time, but it's manageable, and now that I know what is causing all my symptoms, I'm feeling much better mentally.

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Thu Jan 28, 2016 12:59 pm

I'm very glad that you got a diagnosis and also that it is managable.
Good luck :)
Betty
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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

Sojourner
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Re: RLS or something else? Part 2

Postby Sojourner » Fri Jan 29, 2016 5:54 am

Sojourner wrote:Hard to know which road to take if you don't know what steet you're on.



If I could only learn how to spell "street!"
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Sojourner
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Re: RLS or something else? Part 2

Postby Sojourner » Fri Jan 29, 2016 5:55 am

SnappyK wrote:Thanks again to all of you for your support. The MRI confirmed that I have spinal cord compression caused by three bulging cervical discs (cervical spondylosis with myelopathy). Fortunately, my spinal cord compression is classified as mild, and its progression should be slow, so I am not in imminent danger. We are taking a conservative approach and trying physical therapy first, then perhaps injections, and only considering surgery if I continue to worsen. I am still in pain most of the time, but it's manageable, and now that I know what is causing all my symptoms, I'm feeling much better mentally.



Glad you got some answers and good luck with the treatments.
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SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Tue Feb 09, 2016 11:22 pm

Thanks, everybody! I really appreciate the support. I started physical therapy yesterday, and according to the physical therapist, the leg pain I'm having, which initially seemed quite RLS-like, is being caused by my degenerative lumbar disc. The other symptoms that aren't RLS-like (numbness and tingling in hands, electric shocks in thumbs, burning in my shoulders, pain in my collarbones, headaches, neck stiffness, etc.) are being caused by my bulging cervical discs. This all makes sense, but the doctor wasn't specific before. Just wanted to report this in case it helps someone else sort out what might be going on with them when there's a lot of different and dynamic symptoms.

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Wed Feb 10, 2016 9:54 am

SnappyK - thank you for your update and I hope that your physical thereapy proves positive with great results.
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 » Thu Feb 25, 2016 2:25 am

Just checking in. I am finishing my third week of physical therapy and my leg and foot pain is somewhat better. The pain still varies a lot from day to day, but overall it's trending in the right direction. Because I have both lumbar and cervical spine issues, I am mainly doing exercises that help both areas at the same time.

I have also been experiencing flank pain since my second day of physical therapy. I thought I pulled something in my abs, but the pain moves around a bit from front to back, and I have a fairly large benign tumor on my kidney that's been monitored for almost ten years. I'm seeing my urologist tomorrow to help determine if the pain is tumor related, and if so, it's possible that some of the other pain I've been experiencing (mainly in my lower back) is actually being caused by the tumor and not the lumbar issue. Not sure what the odds are that three unrelated problems would all cause me pain at the same time, but at this point I would say that anything is possible. If I ever sort out which pains are being caused by which problems, I'll post them here under the slim chance that someone else might be trying to deal with this situation one day.

SnappyK
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Re: RLS or something else? Part 2

Postby SnappyK » Tue Mar 01, 2016 12:27 pm

My condition has suddenly taken a turn for the worse. The numbness in my left hand is getting considerably worse, the flank pain is getting stronger, and my left heel was so bad yesterday that I could barely walk. I had a long talk with my physical therapist and my symptoms are so atypical, especially the moving around of the pain, that she thinks I probably have a systemic illness that's been causing all of these symptoms all along, everything from the RLS-like symptoms in the beginning to the heel burning to the bone and muscle aches to the numbness and even maybe the kidney tumor pain as well. It could be something that's causing a great deal of inflammation, which in turn is affecting nerves all over my body. Could be something like Lyme disease. I will keep you posted, just in case this bizarre chain of events happens to someone else.

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Tue Mar 01, 2016 1:50 pm

Have you discussed the possibility of Fibromyalgia (which I have) and/or Polymyalgia. These conditions can give all sorts of weird and random aches and pains.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Tue Mar 01, 2016 7:25 pm

I do hope you get answers very soon.
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 » Wed Mar 02, 2016 1:00 pm

Fibromyalgia has come up, but so far it doesn't sound like a good fit. My pain is deeper and in different places than is typical with fibromyalgia. Lyme disease is a somewhat better fit but still not great. I see the neurologist tomorrow and will talk to her about all the possibilities. Given that my symptoms are rapidly increasing in scope and severity, hopefully she can find an answer soon. Thanks to both of you for your support, I appreciate it.

Polar Bear
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Re: RLS or something else? Part 2

Postby Polar Bear » Wed Mar 02, 2016 4:33 pm

Good luck with your appointment tomorrow.
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 » Wed Mar 09, 2016 9:11 am

Snappy - what rotten luck you're having. I appreciate that you take the time to keep us updated. WED/RLS is so hard to diagnose for some people, all such information is helpful. But what a nightmare this must be for you! From having a diagnosis and the relief of knowing what was causing the problems, to being back in the dark again. :( :( How did it go with the neurologist?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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SnappyK
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Joined: Sun Apr 26, 2015 6:25 pm

Re: RLS or something else? Part 2

Postby SnappyK » Wed Mar 09, 2016 1:37 pm

Thanks, Beth. I saw the neurologist on Monday and she did nerve conduction testing/EMG on my arms. Based on the test results, she has diagnosed me with mild carpal tunnel syndrome in my left arm. This would explain the numbness, tingling, and electric shocks in my left hand. However, we have no idea what is causing the carpal tunnel, and we still don't know what is causing all the other symptoms. I had the same testing done on my legs about six months ago, long after the RLS-like symptoms had started, and it showed no problems, so we did not repeat that test.

I reached out the other day to a long-time friend of mine who is a breast cancer survivor and has been left with peripheral neuropathy and other issues from the chemo and radiation. She recommended that I try vitamin B12 supplements. She said that they have helped with her pain a lot, and it couldn't hurt to try them. My GP is already testing me for a B12 deficiency, so I figured, what the heck, might as well try it. And after two days, I am feeling better. Given how much my pain fluctuates from day to day, I can't swear that it's the B12, but yesterday afternoon I was walking around the house and suddenly realized my feet weren't hurting for the first time in months. The pain came back a few hours later, but even if it's unrelated to the B12, it still gives me hope to know that my feet don't necessarily have to hurt all the time.

ViewsAskew
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Re: RLS or something else? Part 2

Postby ViewsAskew » Thu Mar 10, 2016 6:56 am

Fingers crossed!
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.


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