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I just saw your December 2012 thread, in which you stated you were diagnosed with Isaac's Syndrome and said how it had caused great pain in your legs, etc. Are these the same symptoms as you've described in this thread? I'm sorry if I'm missing something.
I just saw your December 2012 thread, in which you stated you were diagnosed with Isaac's Syndrome and said how it had caused great pain in your legs, etc. Are these the same symptoms as you've described in this thread? I'm sorry if I'm missing something.
Yes, I had another EMG done by specialist, who says it is not Isaac's, first doctor said it was.
I have all the symptoms of Isaac's with the exception I have no muscle twitching on the outside, mine is on the inside, its a crawling sensation as if something is moving under my skin.
At least Isaac's Syndrome is now on this site for anyone searching, most people and doctors never heard of it. I may have it, first dr. says yes, next one says no. ANA positive, Drs. say may not mean anything.
sounds like you are having a really hard time and in substantial pain..............so sorry.
Have you been offered a TENS Unit to try to alleviate some of your pain?
You know I was just at the pain clinic and the PA their mentioned that, I didn't know what she was talking about, she said Ins. may pay for that, anyway I'm sure she meant the TENS unit.
How low is your Vitamin D? Most people, according to lab tests, are low or on the low end of the range so unless it's REALLY low it seems to not be a big deal for most people. I don't even think the number means as much as people think it does.
I was looking for that on my blood tests 25(oh)D its called and I don't see it
My Calcium runs on the high side, I think some Drs. rx the Vit D when calcium levels are high
My aunt has a different condition, something called MGUS that affects multiple body systems, but I know that her arms and hands are in so much burning pain that she can't even wipe herself when she uses the bathroom. Like you, she feels a lot of frustration and anger towards the medical system, and overwhelming fear with what is happening to her body. She is in Germany, and been sent to countless specialists (neuro, rheumatology, vascular, etc...). They came to her diagnosis after years of tests simply because her condition is rare and looks like many other things.
Chronic neuropathic pain is present in many different diseases, and it is almost impossible to treat. The goal is to make your pain manageable while minimizing disability, and typically this requires going to a pain clinic. They have the best technologies and medications available, and unlike primary care docs, are better at treating chronic pain with narcotics (if they are needed) over the long term -- with narcotics comes sedation and increasing tolerance, so some patients must be monitored by pain specialists while taking crazy high doses of narcotics (ex. cancer patients). Narcotics do not work as well for neuropathic pain, hence the need to see a specialist and explore alternatives. My aunt was put on a tricyclic antidepressant, and refused to take it because she does not feel depressed, but the thing she didn't understand is that antidepressants are also used to treat neuropathic pain (ie. it is adjunctive therapy).
Sometimes docs just don't know what is going on. This is not due to incompetence, but rather the limits of current medical knowledge. So many specialists are involved because they are trying to figure it out from the perspective of different branches of medicine. Even if they never figure it out, what you need treated is the pain. All patients deserve adequate pain control, and in fact it is viewed by many healthcare organizations as a human right. You definitely should go to a pain clinic and discuss all of your options until you find the relief you deserve. This won't mean the end of pain, but something more tolerable and that still preserves your daily functioning.
I feel for your aunt, God it must be so hard for her. She does sound like my mum, my mum didn't want to take an anti depressant years ago for some pain, saying she wasn't depressed, but of course my mum is from the old school. She can get anxiety and won't take her Xanax at times, I told her "everyone in the world would like to have Xanax" please take the pill!!
The pain clinic did mention the TENS unit as the other poster was good to mention. I just have to deal with it, I'd like a dx, its been so long now since my normal life.
My mother went through a similar situation where they said she had restless legs and such but she swore it was burning, not restless. She would get so mad at the doctors trying to ytell her what she was felling. She would say, "I know what the feck I am feeling, and you just aren't listening!!!"
She was an RN and was on her feet all day and before long she had to retire because of the pain. But because she was an RN, she kept pushing doctor's buttons until they finally discoevered it was Rheumatoid Arthritis (RA).
I hope they figure out what it is soon.
Thanks!
Yes you get Damn mad at the Drs. who put you on the back burner & forget about you
In your 2nd post you said you've been taking a narcotic for 15 years. (...now I do see another doctor for another problem I already take a narcotic, been taking that for 15 yrs...) Narcotics, when taken for a long time, can actually cause pain like you're feeling. That's why I asked what narcotic you're taking.
I understand. I asked my Dr about that but he said no, not like the symptoms you're having.
I sure don't understand this, right now my face, arms and legs feel numb & tingly, your skin feels tight like a sunburn, under different circumstances you'd be told to go to ER because you could be having a stroke.
But hell, you need to be dying to get admitted, I was admitted one day last summer because of fast heart rate & high bp and released next day.
My Neuro told me not to bother going to ER because they can't do anything and to call him.
I was told also by ER doc if your legs ain't turning blue you don't get admitted and so the long process begins for a dx.
I have a similar issue, but mine is not quite so dramatic and is only in my left leg. I periodically have all the symptoms you describe, sometimes all at once but usually only some at a time. Often it feels like patches of my skin is on fire (and it DOES get red), other times it feels like things are crawling on my leg and foot, sometimes I can't even feel my foot. Once in awhile I have shooting pains in my toes. Then, bam!, for no reason, my ankle swells up hugely — sometimes it stays swollen for days, other times it goes away in a couple of hours. I've had all symptoms abate for months at a time then one day I'll be doing as something as benign as lying on the sofa watching a movie and it starts all over again. I have sciatica problems on my left side, too, and over the years I have had several injuries (broken leg, two ankle sprains) on my left side. So obviously it's nerve-related. But there's no rhyme or reason to it and every medical professional I've seen has just shrugged (once they determined that I don't have a blood clot or diabetes).
I have had some relief from my symptoms by taking a supplement that contains dried horse chestnut. Many companies market it with claims that it increases circulation to the limbs. It has helped my swelling when nothing else does. It hasn't cured me, but since it helps some I take it. I also have fewer symptoms when I'm taking anti-depressants than when I am not. As someone else mentioned, anti-depressants are often prescribed to people who have fibromyalgia. Here are two kinds of supplements with the horse chestnut ingredient: Andrew Lessman Circulation, Vein Support Vitamins for Legs - 360 Caps at HSN.com Nature's Way Leg Veins with Tru-OPCs, Capsules | drugstore.com
Two other wild cards:
1. I know a woman who had extreme symptoms of nerve damage and loss of muscle control on one side of her body. Two doctors diagnosed her with multiple sclerosis. Then one day she went to the dentist and he said, "Doesn't this tooth hurt?" She said no but he x-rayed it and found she needed a root canal. The tooth was so bad (mind you, no tooth pain!) they removed it. Instant cure for all the nerve and muscle problems in her leg and arm.
2. People who have thyroid problems and/or depression are often also bizarrely short on Vitamin D. I live in Arizona, land o' too much sun, and mine is still so low I have to take 2,000 IUs of D-3 daily to keep up a level I had to take a prescription to achieve. Don't play around with guessing what your levels are. It's a simple blood test and if you're low the doctor can prescribe what to take to get it up to an acceptable level. Symptoms of low D can be invisible. On the other hand low D can manifest as neuro-muscular problems including intermittent pain and muscle twitching. People who are obese, over 65, and/or African-American almost always need more Vitamin D than anyone can get from natural sources. Sun blocking — in the form of everything from skin creams to long sleeves to tinted windows — can cause you to need supplements. Vitamin D Deficiency- An Ignored Epidemic
First, I am so sorry to hear of all you're going through. Chronic pain is no picnic, and shuttling from doctor to doctor searching for a diagnosis is just a recipe for frustration.
One thing that struck me in your initial posts - you said you were ANA positive? That's a marker for autoimmune disease. When you next see the rheumatologist, you should double check that, and have them repeat the test. The rheumy should take it seriously.
My mom has a form of vasculitis called Wegener's Granulomatosis. Every three months, she gets blood work done, including sed rate (a general measure of inflammation) and ANA (tells whether the WG is active).
Of course, I have no idea what your particular disorder is, but the ANA needs to be taken seriously.
Wishing you well.
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