Atypical Symptoms? (some newb questions)

[aveerik]

I have noticed my husband sometimes twitches when first asleep and he has no sleeping issues, even with working 24 hour shifts. Well at least Ellaphant we have each other to share our electrical like twitching. I actually like it because I know I won't have any wed symptoms. I do have the occasional twitch like you described when doing something as ordinary as picking a glass up. Still almost all are when falling asleep.

Ann you are correct about movement doesn't fix my symptoms but yes moving does prevent me from going freaking crazy with a strong physical anxiety.

[Ellephant]

So after doing a lot more research and reading about personal experiences with various neurological disorders, it seems like everything that I have kind of fits more neatly into the MS jar than the RLS jar. What confuses me is I don't have any brain lesions (yet) so I really have no idea. I have an appointment at Johns Hopkins on December 18th (that was the soonest available), but as time progresses and when I really think about it, a lot of what I'm dealing with is not accompanied by the urge to move - even though it is all primarily in my legs. It's possible I have mild RLS and, as was previously suggested, something else that is more prominent in terms of symptoms. Hopefully this "mystery" will be solved sooner rather than later. Before December 18th would be ideal haha, not really too excited about traveling to Maryland to see specialists for a disease I don't really think I have anymore, but I know that even if it's not RLS they will probably be more accurate at diagnosing what I DO have.

Siighhhhhhhhhh

This is getting really old really fast

[ViewsAskew]

So after doing a lot more research and reading about personal experiences with various neurological disorders, it seems like everything that I have kind of fits more neatly into the MS jar than the RLS jar. What confuses me is I don't have any brain lesions (yet) so I really have no idea. I have an appointment at Johns Hopkins on December 18th (that was the soonest available), but as time progresses and when I really think about it, a lot of what I'm dealing with is not accompanied by the urge to move - even though it is all primarily in my legs. It's possible I have mild RLS and, as was previously suggested, something else that is more prominent in terms of symptoms. Hopefully this "mystery" will be solved sooner rather than later. Before December 18th would be ideal haha, not really too excited about traveling to Maryland to see specialists for a disease I don't really think I have anymore, but I know that even if it's not RLS they will probably be more accurate at diagnosing what I DO have.

Siighhhhhhhhhh

This is getting really old really fast

I imagine it is getting VERY old. You may be catching it early enough that you're not going to see some of the later symptoms. It's a reasonable match, I'd guess, but I'm NOT a doctor!!! And, it doesn't mean this is it - I know you know that, but I had to say it.

Oddly, the rate of WED/RLS with MS is higher (it's higher with several autoimmune disorders).

Glad you're going to Johns Hopkins. It's a long wait, unfortunately.....

[Polar Bear]

Ellephant - very best wishes.

[aveerik]

Ellephant I wish you great results. I really hope it isn't MS. Please let us know what you find out, I know I am very curious. It must be strange to be pretty sure of your diagnosis then find out it might be something else too. I was wondering are you physically tense a lot? I am always physically tense or tight, clenched fists, clenched teeth etc. I do hot yoga as much as I can afford to as it helps me a lot.

I also do the huge twitches a lot when on opiates. I think it is again the more relaxed I am the worse the twitches.

[badnights]

I don't know much about MS. I hope you find out what you have, and that your life improves when you know. I did find myself wanting to make some comments on your earlier posts.

Most of the time the only thing that helps is if I walk stiff-legged, without bending my knees at all so that all the muscles are being pulled and stretched and exerted. Doing really heavy weight-bearing exercises like walking up a massive incline or running up flights of stairs also helps.

What you are saying above, combined with saying movement doesn't help, is almost two contradictory things. The statement quoted is clearly an indication that movement helps. Perhaps you mean that the mild movement of walking doesn;t help, and real exertion or stretching does?

What you describe in the quote is what I do when the symptoms are bad: I have to seriously exert the muscles. If they are not so bad, an intense stretch can work, and is sometimes how I fall asleep (woe to my knees). It symptoms are mild, standing or walking will keep them at bay.

My doctors are hooked on the fact that most RLS patients describe their symptoms as, at least some of the time, something crawling on their skin. I have never felt that before in my life, except when something is actually crawling on my skin. What I feel is built up energy combined with unwarrantedly sore, achey muscles deep inside my legs. I do sometimes get a tingly numb sensation that feels more towards the surface, but that doesn't bother me nearly as much, doesn't come with an urge to move/pent up energy, and still doesn't feel like there's anything crawling on my skin

Your doctors are misinformed. I may be somewhat misinformed too! but I don't know of anyone who describes their symptoms as on the skin. In fact, the descriptions I've seen require the sensations to be deep. What the heck are your doctors reading? I highly recommend Dr. Allen's "Diagnosis of Restless Legs Syndrome", Ch 15 in the 2009 book Restless Legs Syndrome edited by Hening, Allen, Chokrovery and Earley and published by Saunders (Elsevier): a small excerpt is below, but the whole paper would certainly help you and your doctors decide:
"... the sensations appear to have two basic dimensions. First, they are more dynamic than static; that is, they often involve a sense of something moving through the leg or in the leg and they are not like a point source of pain. Second, they are deep in the leg, often described as in the bone and not on the skin or surface of the leg."
Of course, you won't need it if you're going to Johns Hopkins; you might see Dr. Earley, maybe even Dr Allen himself.

I just checked the WED Foundation bulletin for healthcare providers, and unfortunately it is not clear in there that the symptoms are deep. Nor is it clear in the book Clinical Management of Restless Legs Syndrome book (2nd ed.) but in Ch 2, section 1 "Urge to Move" they do say specifically "It is uncommon for the feeling to be localized to the skin surface". That section is also a very good description of the sensations, though not as good as Dr. Allen's.

Maybe would anyone like if I scanned the paper by Dr Allen and posted it?

Does anybody else find that their symptoms are in fact not actually worse at night?
Mine are certainly not better at night, but they're not any worse than they are at any other time of the day when I'm lying down. Also, has anyone else noticed that their symptoms are actually less when initially going to sleep, and WORSE after waking up an hour or two later? Or after laying in bed awake for a few hours? I know the standard is that the symptoms are worst at night and generally ease up into early morning, but I find that the opposite is true for me, when I'm trying to fall asleep between like midnight and 3am, my symptoms are usually better than when i'm trying to fall back asleep between 6-9am.

When you get far enough along, the circadian effect blurs. Also, depending on how you've been dealing with the disruption to your life, it may be disguised : your circadian day may have shifted which will place your worst symptoms whenever your new "evening+night" is - and that might be what is early morning to everyone else.

But yeah. The distractability is 100% me. I'll probably be making an appointment at Johns Hopkins soon because this is getting ridiculous and EVERY nerve test and MRI comes back normal

All tests are negative in WED/RLS so that is consistent too! lol
All pain is reduced by distraction, and the nasty/abnormal sensations of WED qualify as pain defined broadly.

I don't have personal experience with the twitches you describe except myoclonic jerks just as I fall asleep, which happen only if I am very tired. It sounds like Ann might be on to something.

aveerik made an interesting comment too:

When I said I get no relief when I move I mean that I move, and yes the anxious urge to move is temporarily gone but as soon as I stop it is there again. So yes I get relief but not enough to be able to stop moving. I don't consider it real relief until I can stop moving and rest

That's discussed by Dr. Allen too, for physicians doing differential diagnosis to beware that patients will say they don't have relief from movement because the relief does not last any longer than the movement - as soon as they stop, it's there again. That implies that it was relieved -partly or fully - by movement, but lots of patients don't use the words that way. Most diagnostic descriptions now say "relieved by movement as long as the movement is occurring" to clarify that.

I hope this all works out for you. You should get things sorted out at Johns Hopkins; that's a very positive step.

[Rustsmith]

First, I am not a doctor. I have been the spouse of an MS patient for 40 yrs. I have WED/RLS, so between the two of us we are familiar with the similarities and differences of these two conditions.

My initial take on your situation is that it does not sound like MS, but then MS strikes everyone differently. The fact that your MRI has been clear is a significant sign considering the severity of the symptoms that you have been experiencing. However, it is my understanding that for MS, the lesions appear best when the MRI is done with a Gadolinium contrast. If they were not looking specifically for MS and used Gd, it could still be there and the previous MRIs just missed it.

MS also tends to either be progressive in its attack or remitting where the symptoms go away after about two weeks. If your symptoms are not getting worse or else not easing up, it may not be MS.

If you still think that it might be MS, you need to get checked out ASAP. The damage done by MS is permanent, but now there are treatments that can be done that minimize the progress of the disease.

Also, there are a lot of less common neurological conditions. My wife was diagnosed in the days before MRIs, when MS was a diagnosis of exclusion. Her doctor put her in a major research hospital for about a week and then ran all sorts of tests to rule out everything else. At the end, he told us "I can tell you what you do not have. I think that you have MS, but it will take six months to see how it develops before I will know for sure". Now, she gets a new MRI about every 2 yrs to monitor the progression of the damage.

When I first started having problems, our neurologist sent me for an MRI. Mine came back clear.