burning/numb/itchy legs..please help

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burning/numb/itchy legs..please help

Postby jessnk12 » Sun Apr 27, 2014 7:53 am

My thighs itch horribly, but they're numb and hot to the touch. They itch/are numb while awake, even when moving around most days..when I lay down for bed, they burn intensely..still mostly numb. If I try to nice? Forget it. The pain has brought me to tears more than once!!!

I'm newly diagnosed, brought to me by a wonderful case of optic neuritis on January 1 of this year that still hasn't lessened. My Neuro has me on amantadine for fatigue..and has ordered Tec nearly four weeks ago that I haven't started yet due to wonderful insurance denials. No other meds.

I take about 5k mcg/ night, just for the extra boost if energy, as I'm a stocker over night. I'm laying in bed now with my legs play their shenanigans.

I'm desperate for help and advice. I don't know what to do and it's driving me even more bonkers than not being able to see properly!
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Re: burning/numb/itchy legs..please help

Postby jessnk12 » Sun Apr 27, 2014 7:54 am

If I try to move* the pain is horrible, that is. Stupid smart phones...
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Re: burning/numb/itchy legs..please help

Postby jessnk12 » Sun Apr 27, 2014 7:55 am

If I try to move* the pain is horrible, that is. Stupid smart phones...

5k mcg of b12*, too!
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Re: burning/numb/itchy legs..please help

Postby Anonymoose » Sun Apr 27, 2014 8:17 am

Hi jessnk12,

I get a nice variety of pain and numbness during relapses too. Unless you want to take drugs for it (I don't and don't know anything about drugs for symptoms), you kind of just have to have faith that it will pass in due time. Don't panic thinking its part of your life forever. Deep breaths, spoil yourself, have a tantrum, and buck up. :)

I've also experienced pain and numbness not associated with ms. Those episodes have been caused by nutrient deficiencies/imbalances. It's been difficult to identify the deficiencies/imbalances and I've had to have a lot of bloodwork done but once I know what I'm dealing with and address the problem, the symptoms quickly (days) and easily pass. Jimmylegs here is the nutrition guru and could offer guidance if you care to pursue that possibility.

Sorry you're having a hard time. It's not always like this.
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Re: burning/numb/itchy legs..please help

Postby lyndacarol » Sun Apr 27, 2014 10:39 am

jessnk12 wrote:My thighs itch horribly, but they're numb and hot to the touch. They itch/are numb while awake, even when moving around most days..when I lay down for bed, they burn intensely..still mostly numb. If I try to nice? Forget it. The pain has brought me to tears more than once!!!

I'm newly diagnosed, brought to me by a wonderful case of optic neuritis on January 1 of this year that still hasn't lessened. My Neuro has me on amantadine for fatigue..and has ordered Tec nearly four weeks ago that I haven't started yet due to wonderful insurance denials. No other meds.

I take about 5k mcg/ night, just for the extra boost if energy, as I'm a stocker over night. I'm laying in bed now with my legs play their shenanigans.

I'm desperate for help and advice. I don't know what to do and it's driving me even more bonkers than not being able to see properly!

Welcome to ThisIsMS, jessnk12. We are here to listen; we don't have all the answers, but will offer suggestions, since you asked for advice. Each one of us has different ideas.

I agree with Anonymoose: Take a deep breath, spoil yourself – try to relax in a warm bath with 2 cups of Epsom salts (Epsom salts can be purchased at the grocery store – it contains magnesium and magnesium relaxes the muscles. This is no guaranteed cure for your legs, but it is worth a try).

You mentioned a neuro has you on amantadine for fatigue… Fatigue is a common symptom with vitamin B12 deficiency, gluten sensitivity, and many other conditions. Since you are taking 5000 mcg of B12 nightly, I assume your GP or neuro tested for a possible B12 deficiency – if not, you might ask for this testing (a severe deficiency might require weekly or even daily B12 injections). I wonder if blood tests have been done to determine if you have gluten sensitivity.

I hope you have a compassionate GP to work with; there are common conditions that should be considered – not everything is the result of MS.
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Re: burning/numb/itchy legs..please help

Postby jessnk12 » Sun Apr 27, 2014 4:00 pm

Thank you Anonymoose, I think I had the tantrum under control this morning before I made my post..lol. I literally broke down on my fiance. I was crying on his shoulder and everything about having to take another pill.

Lyndacarol, thank you. My neuro has run a slew of tests on me and I'm not exactly sure what all the bloodwork was for, but "everything was fine" whatever it was. I don't have a GP as I just recently got insurance. I was diagnosed without insurance.

I've taken b12 for years off and on just for the extra energy. I wasn't ever suggested to do so, so I'm not sure if there is a deficiency or not.

Last year the burning and pain was in my shoulders and I went to a doctor and he was going to send me to a reumatologist. I never went, because I didn't want a prior diagnosis, and then it kinda just stopped on it's own. The exact same pains are in my thighs now. The pain is so bad at night sometimes it wakes me up from a dead sleep. It's not very fun at all.
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Re: burning/numb/itchy legs..please help

Postby lyndacarol » Sun Apr 27, 2014 5:56 pm

jessnk12 wrote:My neuro has run a slew of tests on me and I'm not exactly sure what all the bloodwork was for, but "everything was fine" whatever it was. I don't have a GP as I just recently got insurance. I was diagnosed without insurance.

I've taken b12 for years off and on just for the extra energy. I wasn't ever suggested to do so, so I'm not sure if there is a deficiency or not.

Jess, I think it is a good idea to keep your own file of all your blood test results. Call your neuro's office and ask for a copy of each test and the actual numbers that were found; do not accept "everything was fine."

At this stage, I think a good GP would be more useful for you than a specialist (you will need a generalist for all the non-MS issues that come up)– collect recommendations from coworkers, friends, and family, even neighbors. In my opinion, you really should investigate the possibility of a vitamin B12 deficiency. If you have a B12 deficiency, it is easily and inexpensively (about $40 a year) treated with B12 supplementation (sublingual lozenges and, at worst, painless injections); when it comes to MS, the cause is unknown and the "experts" have no effective treatment for it. Currently approved MS treatment is more difficult/uncomfortable and MUCH more expensive.

You may find information in the following video useful: "Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12.
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Re: burning/numb/itchy legs..please help

Postby centenarian100 » Sun Apr 27, 2014 10:54 pm

You possibly have neuropathic pain due to transverse myelitis.

It this symptom is totally new, you could consider getting treated for a relapse with solumedrol. It may improve on its own too.

symptomatic treatment options include neuropathic pain medications (gabapentin/lyrica/cymbalta/nortriptyline) or acupuncture.

B12 deficiency doesn't mimic optic neuritis, so it's doubtful that b12 deficiency explains all of your problems, but you should probably make sure it isn't low anyways.

best of luck
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Re: burning/numb/itchy legs..please help

Postby jessnk12 » Mon Apr 28, 2014 12:31 am

I'll be looking into a gp and a ms specialist, as my Neuro stated he could refer me to one at uab, but I declined because I know too many crazy people that work there.

Thank you for the advice. I'll be going by the doctors office this week to check the status of my insurance appeal, anyway.
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Re: burning/numb/itchy legs..please help

Postby euphoniaa » Mon Apr 28, 2014 8:52 am

jessnk12 wrote:My thighs itch horribly, but they're numb and hot to the touch. They itch/are numb while awake, even when moving around most days..when I lay down for bed, they burn intensely..still mostly numb.

I take about 5k [mcg of b12] / night, just for the extra boost if energy, as I'm a stocker over night.


Hi jessnk12, and welcome! My first thought was to suggest that you might drop the Vit B12 for a few days and see if any of your discomfort disappears, since I've had pretty weird side effects from B12 myself. In fact, my reactions to most vitamins and supplements have often been worse than my MS!

So... I pulled up the B12 info from Mayo Clinic: http://www.mayoclinic.org/drugs-supplem ... b-20060243
And guess what? "Itching and burning" can indeed be side effects of B12 supplementation. Plus many other side effects like high blood pressure, which is something I've been unable to get under control for years. Perhaps it's because my bloodwork showed that I was drowning in B12 when I was taking 1000 mcg/day. And it still won't go down to normal levels after stopping B12.

B12 seems to have quite a few more potential problems from supplementation than other vitamins.

From Mayo Clinic:
Vitamin B12
Safety
The U.S. Food and Drug Administration does not strictly regulate herbs and supplements. There is no guarantee of strength, purity or safety of products, and effects may vary. You should always read product labels. If you have a medical condition, or are taking other drugs, herbs, or supplements, you should speak with a qualified healthcare provider before starting a new therapy. Consult a healthcare provider immediately if you experience side effects.

Allergies
Vitamin B12 supplements should be avoided in people sensitive or allergic to vitamin B12, cobalt, or any other product ingredient.

Side Effects and Warnings
Vitamin B12 is likely safe when taken according to the recommended dietary amounts (RDA) or less.

Use cautiously in people with heart concerns, due to an increase in rates of restenosis (reoccurrence of narrowing of a blood vessel) after stent placement and vitamin B12 supplementation.

Use cautiously in people with high blood pressure, as high blood pressure following intravenous (IV) administration of hydrocobalamin has been reported.

Use cautiously in people with a history of cancer.

Use cautiously in people with skin disorders, as rash, itching, and burning have been reported. Pink or red skin discoloration and facial flushing have also been reported.

Use cautiously in people with genitourinary concerns, as urine discoloration has been reported.

Use cautiously in people with gastrointestinal concerns, as nausea, difficulty swallowing, and diarrhea have been reported.

Use cautiously in people with blood disorders, as it has been reported that treatment of vitamin B12 deficiency may lead to an increase in blood volume and the number of red blood cells.

Use cautiously in people with low serum levels of potassium, as the correction of megaloblastic anemia with vitamin B12 may result in fatally low potassium levels.

Use cautiously in people with a history of gout, or elevated uric acid levels, as the correction of megaloblastic anemia with vitamin B12 may start a gout attack.

Use cautiously in people taking the following agents, as they have been associated with reduced absorption or reduced serum levels of vitamin B12: ACE inhibitors, acetylsalicylic acid (aspirin), alcohol, antibiotics, anti-seizure agents, bile acid sequestrants, chloramphenicol, colchicine, H2 blockers, metformin, neomycin, nicotine, nitrous oxide, oral contraceptives, para-aminosalicylic acid, potassium chloride, proton pump inhibitors (PPIs), tobacco, vitamin C, and zidovudine (AZT, Combivir®, Retrovir®).

Avoid in people sensitive or allergic to vitamin B12, cobalt, or any other product ingredient.


P.S. Our local docs order blood tests at our local hospital, and I've been able to get copies of absolutely every test, x-ray, hospital visit, plus CDs of the MRIs, PET, CTs from them -- free. Then I take them with me to my neuro 2 hours away. Also, they just started a new system this month where I can log on to the hospital portal and get access to every single one of my reports electronically from the last 3 years.

Plus, my GP just started his own portal so I can check all my records there, and send them corrections if they're in error.

You should try to find out what's available in your area. Good luck!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: burning/numb/itchy legs..please help

Postby jessnk12 » Tue Apr 29, 2014 5:51 am

Thank you much for the information. I'll chill out with the b12 for a while and see if that helps at all. I've had tingly legs for a while but the pain being so harsh that it wakes me up from sleep is rather aggravating!
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Re: burning/numb/itchy legs..please help

Postby lyndacarol » Tue Apr 29, 2014 9:03 am

Again, I urge you to watch the following video and noticed the MYRIAD symptoms, which includes peripheral neuropathy and optic neuritis:

http://www.youtube.com/watch?v=BvEizypoyO0

Part 2 (@17:40): The story of Dr. W. David Carr, pediatrician

@22:08 TESTS: Serum B12; HoloTranscobalamin; Homocysteine; Methylmalonic Acid; Unsaturated B12 Binding Capacity
@24:10 High Risk Groups: Family history of B12 deficiency: Pregnant Women (@26:06); Vegetarians; The Elderly

RED FLAGS: toe dragging/steppage gait (foot drop), unsteadiness/loss of balance, Multiple System Atrophy (Olivo-ponto-cerebellar Atrophy), optic neuritis, hearing loss, speech problems, panic disorder, muscle wasting, temperature dysregulation, anorexia, diarrhea, malabsorption, anger & depression,

Dr. Carr thinks it is odd that B12 is not routinely tested.


I emphasize again that I believe it is important for you to request that your doctor investigate a possible B12 deficiency. Laying off the B12 supplements for a while is a good idea before any testing is done – a supplement may throw off the accuracy of a test AND might mask any real deficiency.

" The Framingham Offspring Study suggests 40% of Americans have suboptimal B12." As euphoniaa posted from the Mayo Clinic: "the following agents... have been associated with reduced absorption or reduced serum levels of vitamin B12: ACE inhibitors, acetylsalicylic acid (aspirin), alcohol, antibiotics, anti-seizure agents, bile acid sequestrants, chloramphenicol, colchicine, H2 blockers, metformin, neomycin, nicotine, nitrous oxide, oral contraceptives, para-aminosalicylic acid, potassium chloride, proton pump inhibitors (PPIs), tobacco, vitamin C, and zidovudine (AZT, Combivir®, Retrovir®)."

So many Americans are using these products that it is not hard to imagine that 40% could be low in B12!
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