Severe tingling, burning + pain in both legs
Posted , 205 users are following.
Hi everyone,
I've been having severe tingling and pain in both my legs (toes, feet, calves and knees) for about seven months now. On running a few tests, I found six months ago that I was deficient in vitamins B12 and D, which was set right. The neurologist said my symptoms were due to the deficiency, however, the condition has steadily worsened in spite of the deficiency being rectified.
Here are the tests I've done:
Vitamin B12 and D: Levels stable for the last 4 months
Thyroid: Normal
Sodium, calcium, potassium: Normal
Iron: Normal
Bloodwork, ANA, dsDNA all normal.
Rheumatoid factor negative.
The pain is worse at night and while lying down. The docs have told me I've got Restless Leg Syndrome. I took Pregabalin for about a month and Ropinirole for ten days but both didn't help with the tingling - in fact the side effects were terrible.
I'm not on any medication as of now and the pain + tingling has worsened, now almost constant, like there's electricity shooting up my legs all the time. I'm unable to do anything physically exerting like climbing stairs. Walking makes my feet hurt terribly (which I believe is not the case in RLS?).
Does anyone have suggestions to confirm the diagnosis? Is there something I'm missing? I'm due for an LS MRI, but the docs have said it is most likely to come clear.
Thanks a ton!
17 likes, 568 replies
tammy97474 moimystique
Posted
I to suffer tingling burning and none stop pain in my legs. What makes this worse the cold rain keep your legs warm at all times stay in bed cover up. Hot baths do wonders I am taken Percocet lyrica and flexural help at first now nothing helps. Can only tell you the feeling won't go away until you can bundle up even if it is summer time you have to keep the effected nerve warm
Victoriaj26 moimystique
Posted
Hello moimystique It's 1:23 a.m. and I had to get up because I'm in so much pain. I was diagnosed with Fibromyalgia and for the first year the pain was different more regular type aching pain. Now it's like someone is sticking me all over with pins, my skin is sensitive to touch, my clothes sometimes feel like sand paper. Tonight I'm having the tingling pins and needles pain from my head to my toes. My primary to take 800 mg of ibeuprofen, a step up from the 600 mg I was already taking, that had no effect on my pain. I am taking gabapentin for rls and that was helping. I have C-PTSD and I'm on anxiety meds and anti depressants that used to knock me out at night. Now I don't even feel the effects. I was grateful to find this site and see I'm not alone. I feel like this is the 21st century for god sakes, 2016...and yet there's nothing known that cures this, or even helps with the pain. I am worried that I'm misdiagnosed, but then I see so many people who have gone through testing and that is their diagnosis.
?My heart aches for everyone on this site who are dealing with this terrible illness, I hope that you all get relief at some point. Hang in there folks!
jackierenee moimystique
Posted
I have had very similar symptoms for over 4 years. It initially began as my feet and hands "falling asleep" during thr night. Now I have the tingling and twitching throughout my legs and sometime hands, arms and even lips. My neurologist has ruled out GB, MS, and ALS. He has diagnosed me with RLS which I don't think is correct either. I take B12, since my body does show B12 deficiency. Meds precribef have done nothing for me. I hope you find some relief. I tend to block out these annoying symptoms but at night it is extremely difficult.
steven12310 moimystique
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Oddity steven12310
Posted
I am in the process of being ruled in or out for MS. I was curious if you could elaborate on your MRI findings. Is your leg pain caused by lesions in your spine or brain?
steven12310 Oddity
Posted
Difficult to answer that since I have several lesions in the spine and quite a few in the brain. All the followup MRI will show is further lesions in the brain which show the progression of the MS
Like everything to do with MS you get good days and bad days. I have had days when all I want to do is end it all just to stop the pain as it gets so severe that you lose all rationale. As I am still able to hobble around and be self sufficient I chose to keep going but I decided a few years ago that when I feel that my quality of life has reached a point where I would have to rely on others to feed me and take me to the toilet etc thats when I intend to pull the plug. My wife is well aware of this and understands. I have lived with this for 15 plus years now and feel so sorry for those of you that have no idea what is happening to you. There are so many neurological disorders where the body attacks itself it is difficult for even specialists to figure out which one is the problem. It took 5 years for my diagnosis and even then it was only when I lost my temper with the neurologist did he admit he thought it was 99.9% MS and then a further year to dx it was PPMS.
All I can say to all you guys and gals out there that are suffering is dont just accept it, do whatever you have to do to get treatment. I know for a fact that a friend of mine who had been dx with MS for almost 19 years was suddenly told by a different neurologist that he did not have MS and a series of injections cured him of the problem (sorry I dont know what the eventual problem was) Point is to nag nag nag your GPs etc until you get a definite dx.
All the best
Oddity steven12310
Posted
It sounds like your wife is very supportive. That is one area in my life I wish I would have taken more seriously. Unfortunately, I may be fighting this solo.
I have strange pain with twitching,etc in my legs. The MS specialist I have seen says this has nothing to do with the small numerous lesions they have found in the subcortical region of my brain. Supposedly, my spine has no lesions.
The million dollar question then is, what is causing my leg pain? I have had every other test in the world and everything is normal other than my brain MRI.
I appreciate your response. I hope you keep on fighting.
steven12310 Oddity
Posted
Hi hun
It would appear to me that you have MS which can give all the symptoms you have. It really needs an MRI and a lumbar puncture done at the same time to do comparisons and usually leads to a better diagnosis than doing them separately. I am very wary of so called MS specialists because they are very few and far between. Many neurologists specialise in one or two of the literally hundreds of neurological problems that exist. It was my GP that dx me long before the neuro would commit to agree and that was because he had done a 2 year sabbatical in India studying MS. I had to got through the route of seeing several different "specialists" who told me I had blocked arteries, then trapped nerves etc.
As I have said you must keep pestering your GP and specialists until they have a dx and I know this can be very frustrating with the slow progress it takes.
I wont be checking out of this mortal coil just yet so dont worry about that. There is also a system of checking your jugular arteries in the neck as many people who have been dx with MS have found they have blockages there. This is called CCSVI (Just google it) and causes the blood in the brain to carry less oxygen to the brain and cause the lesions in brain and can be fixed with a very simple stent procedure
Oddity steven12310
Posted
When all this started they imidiately stuck me in the MRI machine to look at my brain. This was done with and without contrast. They found the small lesions. Then they did the lumbar puncture which was totally normal. A few months later they stuck me back in the MRI machine this time to look at my Cervical and Lumbar Spine. These were totally normal as well. All of this was done in a 3.0 T machine.
It's now a wait and see and then re-do the MRI's and LP in 6 months.
I have never heard of CCSVI. I will consult Dr. Google on this.
Thank you.
TimsNik moimystique
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andra19006 moimystique
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OMG, I thought I was alone. This pain is real and scary because it is ongoing, and all you every get is referrals, or maybe its this or maybe its that. My pain is all day (not so bad), but very severe at night. I am thankful because this thread gives me hope and support, so that I don't have to go this alone. I am not a pill person so my hope is that there are other options for me. I will be praying for everyone because I know what you're going thru. GOD Bless.
tony06571 andra19006
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tony06571 andra19006
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I have suffered from this for nearly a yr. Had many test .Been on lyrica, that was horrible from the side effects. Did a lot of research and found many people saying cymbalta helped. Well i have neen on Cymbalta for a month, and it's been absolutely amazing. My pain is about a 2 as compared to what was always 8 or 9 and always a 10 im bed. I hope it stays this way. It's worth trying , definitely has changed my life.
PinoM655 tony06571
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tony06571 PinoM655
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