RLS diagnosis

[Tonofit]

In Dec. 2014 I started to have frequent leg cramp and pain. I did 2 procedures in Jan 2015, the first on 1/12/15 which I done in other years before except this time 2 IV line shots of Benadryl for iodine reaction for a cervical spine c3,4,5 RF ablation. I continued to have more severe cramps during the day and did a lot of extreme stretches of my legs and a lot of heavy long walking to rid myself of the cramps. I went to my GP doctor and she said it could be RLS possibly. She checked my iron levels and the only one that was out of bounds was the ferritin was at 96 which is just under the 100 threshold I've read about and sodium was a little low, so cut out the diuretic part of bp medication which was told to do, plus tried more magnesium, calcium, iron 325 mg and folate. She gave me a prescription for Mirapex which I didn't want to take while awaiting the next procedure I did on 1/28/15 which was a sinus surgery for septum, turbinate reduction, nasal valve. I had to sit up in bed for a week and had fever, chills, diarrhea, night sweats and extreme fatigue so I couldn't lift my arms. I could hardly walk and had burning pain in my legs and used RICE protocol with lots of ice. I developed a lot of muscle cramp and twitching in the legs mainly and couldn't really sit or stand on hard surfaces without athletic shoes. I got worked up for 2 ultrasound leg images for vein and muscle issues and was normal. I saw a PT expert and he said I had an infection because one blood test I did after the sinus surgery showed a high white blood cell count and currently is back to normal.
I lifted a lawn mower engine to move and tried a formulation of magnesium, calcium and passion flower but 2 hrs. latter had tremendous burning in my inner thighs and continue to have more burning at night and read the passion flower can cause inflammation of blood vessels, and that was about 2 weeks or so ago. The PT expert suggested I try some protein formulation and light exercise of 20 min. or so for several weeks and the protein does help somewhat but not long lasting just 3 or 4 hours. Every night there is pain, cramping or burning and sweating and twitching, but getting out of bed isn't compelling to relieve the symptoms. I'm sleeping better without any drugs as I gain more on the fatigue but awake about 2 to 3 times a night with leg pain or burning. I tried Tylenol 3 but that didn't stop the burning last night in my legs or lower arms so It's been long enough so I'm starting Horizant and see if I can get more of this figured out, I'm going to see a physiatrist next week and get a work up and then go back and do an update on the iron levels and see my GP doctor. Does this seem like RLS or something else like a big case of Anxiety, as the symptoms happened really quickly and the initial diagnosis for RLS? Do you think it's worth a visit to Dr. Mark Buchfuhrer in LA as I can go there in early April?

[Polar Bear]

Tonofit, welcome to the Discussion Board.
Is your doctor experienced in WED/RLS? Your symptoms are not entirely immediately convincing of WED although some of them can occur with WED.
You mention the burning which can occur, but it is also a symptom of neuropath.
Also the cramps are not directly symptomatic of WED but of course can occur.
You do refer to twitching which could be descriptive of the WED symptom that people call by different names, crawling, creeping, pulling.

Also your ferritin at 96 is what many of us who suffer with WED/RLS would wish for. Doctors often consider 10 - 20 to be normal.

QUESTIONS TO DECIDE IF YOU HAVE WED
If it helps, here are the questions listed by a doctor to determine if it is WED:
1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When you are symptoms least?
12. Do you find your symptoms are less in the morning?

[Rustsmith]

First, I would like to second everything that Polar Bear has said. You also need to keep in mind that each of us is different in how our WED/RLS expresses itself in both our symptoms and how it expresses itself in our lives.

You indicated that your GP had given you a prescription for Mirapex that you decided not to take. There is a diagnostic method for WED that is not used very much anymore. This method involved taking a single dose of Mirapex, or another dopamine agonist. If you have WED, that single dose of Mirapex should seem like a miracle and virtually all of your WED symptoms will disappear. Unfortunately, MIrapex is like a double edged sword and can end up making things far worse through augmentation. That first dose will not cause augmentation, but subsequent doses might. If the Mirapex does not resolve most of you symptoms, then it is highly likely that you are experiencing something else.

[Tonofit]

I tried Horizant 300 mg dose last night and then took 1/2 HCTZ/Triamterene water pill this AM and latter broke out with hives in legs. What to do now as I don't have any solution and have never taken dopamine class drugs due to potential augmentation. What else should I try?

[Rustsmith]

Are you certain that the hives are due to the Horizant and not the Triamterene? The time period between your Horizant and the appearance of the hives is not typical for an allergic reaction. Hives are also not a listed side effect of Horizant but are listed for Triamterene.

As for alternatives, if you do not want to give the DA class of drugs a try and Horizant does not work, that leaves the opiate class of medications. These drugs can be very successful in the control of WED, but many have difficult side effects and many doctors simply refuse to prescribe them.

Since your concern with the DA's is the potential for augmentation with Mirapex/pramipexole, you should discuss Neupro/rotigatine with you doctor. It is new and a LOT more expensive than generic Mirapex, but it is a time release DA that is supposed to have a much lower tendency to cause augmentation. I augmented on Mirapex after about six months and was switched to Neupro with no transition. I did not have any problems with the switch and have been on Neupro now for 9 months without any indications of augmentation. Due to the cost, Neupro is probably not the place to begin treatment for WED (especially since you are not even certain that your problems are really WED), but it has provided to be an effective medication for the treatment of the urge-to-move symptoms of WED whereas Horizant is more effective for those whose primary WED symptoms are related either to pain or insomnia.

In the spirit of full disclosure, I should also state that the treatment of my severe level WED uses a combination of Neupro and generic gabapentin for my insomnia (I do not experience pain). I tried Horizant and it did not do anything that gabapentin wasn't already doing. At an insured out-of-pocket expense of $100/month (the max on my policy) vs about $1, that was an easy decision.

[Polar Bear]

Did the Horizant make any difference to your symptoms, as previously mentioned.

[Frunobulax]

I tried Horizant 300 mg dose last night and then took 1/2 HCTZ/Triamterene water pill this AM and latter broke out with hives in legs. What to do now as I don't have any solution and have never taken dopamine class drugs due to potential augmentation. What else should I try?

A single dose of a dopamine agonist won't cause augmentation. I'd give it a try for one night.
Horizant does not have that diagnostic property - it does not work reliably for (almost) all patients with WED. In my case, Gabapentin (similar to Horizant) actually caused "restless arms" which I never experienced before - my legs were calm, but my arms behaved just like my legs usually did.

[sleepdancer2]

Just a few thoughts. Your description of the severe leg cramps makes me think something besides WED/RLS may be going on. One good thing about you trying the Mirapex is that your enviable ferritin level makes you at less risk for augmentation. I wouldn't be afraid to try it, but I would be cautious at first. I had sudden onset of sleep when I first started on it, and it happened at an inopportune time. If the dose does not help you, I'd be conservative in efforts to "make" it work, like increasing the dose, since you don't even know for sure if it's what you need. About seeing the psychiatrist - are you already on meds from this doctor? Some meds can actually cause WED/RLS symptoms. If not, use caution in starting a new med until you know if it could be problematic if you are already dealing with WED/RLS. Good luck sorting through things.

[badnights]

I think you're on the right track with a physiatrist and GP looking into things, but if you're in the vicinity you cannot go wrong with a visit to Dr. Mark Buchfuhrer. One of you principle goals is to determine if you really do have WED/RLS, and he can help you do it, he has seen all kinds.

The DA test - taking Mirapex for 1-3 nights to see if it helps at all - is, like Steve and Betty said, a valid means of testing whether you have WED/RLS. If you don't, you won't feel relief. If you do, you should feel some relief. For me, the relief was clear, but not complete, and was fading by the third night (I augmented really fast). But there definitely was relief - I still remember the first time I tried a DA med.. I lay down to try to sleep and drifted in this pleasant place where my limbs had heavy, clearly demarcated boundaries that kept the substance of my limbs separate from the empty space surrounding me. A very pleasant change from the usual dissipation of not having boundaries.

Your symptoms don't nicely match up with common descriptions of RLS but some could fit. It is possible, even common, to have WED/RLS plus something else. Tricky to diagnose. But you might not have WED at all. I note particularly your statement "getting out of bed isn't compelling to relieve the symptoms." Are you instead tensing or stretching your muscles as you lie in bed? That might be a valid RLS/WED response. But if not, then that doesn't sound like WED/RLS.

On the other hand, the Benadryl you initially had is notorious for stimulating RLS/WED, even in people who haven't had WED before, for at least as long as you take the Benadryl. But your cramps were more severe during the day (not a sign of RLS); long walks helped (could be a sign of RLS).

You might have some enlightenment if you can try to pick apart your symptoms and ask this of each one (eg. of the cramps; the burning; the twitching):

• is it worse when I am still (sitting or lying)?
• does it improve when I use the affected limb, and improve more the more I work it? (improve by walking or lifting weights)
• is it worse in the evenings and early night, best in the morning?

If Yes to all, probably WED/RLS. If yes to only 1 or 2, need to dig further.

So you may decide you have WED, and you have a separate problem with burning. Or WED and a separate problem with cramping. Or no WED at all. Verify with Dr. B if possible, but the more analysis you've done on your own first, the more benefit you'll get our of your visit with him.

[Tonofit]

I bought the RLS clinical book and gave it to my GP. I visited the physiatrist and am getting an MRI for lumbar neuritis, plus continue on the Horizant. I did find out that my autoimmune system is depressed and the burning in my inner thighs will produce cold urticaria (hives), with a cold pack and have athletes foot at the same time, now after a visit with a dermatologist.
My Iron levels where really good after taking Iron 325mg and the ferritin went from 96 to 123 and other iron levels are really good above what Dr. E. say's in the online videos from John Hopkins. Still on the detective trial.

[Polar Bear]

I'm afraid I kept my book for my own benefit and information but if going to an appointment regarding WED I always take the book and would photocopy a page/s for GP that I think might be relevant. i always have the book on me for him to refer to. Wouldn't trust my GP that the book wouldn't get lost/ disappear/ get buried under 'stuff'

Well done on your ferritin.

[Tonofit]

Found out I don't have RLS as the symptoms were not consistent with actual RLS and were more related to Anxiety and not getting a good evaluation by some doctors who were making quick judgments. Also got worked up for allergies and all the blood tests were normal. One can really make themselves make themselves sick or take on symptoms it seems. Thanks for being here when I didn't know and the help from this board.

[Polar Bear]

I am very happy for you that you do not have WED/RLS, that is a blessing.

I hope your doctor is positive in his treatment and that your symptoms are resolved in the very near future.

We are happy to be able to help.