Can't stand this numbness and muscle cramping anymore :/

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Can't stand this numbness and muscle cramping anymore :/

Postby Elliephant13 » Wed Apr 02, 2014 12:44 am

Hi,

I'm a 38yr old female and I just wish they would give me something for whatever this is!

I already have several auto immune diseases including psoriatic arthritis. For 2 months now I have had whole body numbness, tingling and muscle cramping. My Rheumo says it's MS and so does GP. I see Neuro in 4weeks.

I have barely any sensation in my body and when I do it's travelling sharp tingling. Then my feet start burning or my shoulder muscles or calf cramps. Even my scalp is numb. I can't tell if I need to go to the bathroom because of numbess and I can't feel if I am hungry or full so I don't know how much to eat.

My walking is very difficult and can be painful at times. I just got told I have the balance of a 70 yr old because I'm bumping into everything like I'm drunk and jiggling like a tea bag.

I can't taste anything. I burn my mouth on too hot food. I can't feel the water temp in the shower.
At first it was a novelty to be numb and not feel pain but now it's driving me insane because I can't feel pleasure either! I feel so sad to think that I might never ever feel my partners touch again anywhere.

Almost forgot (you'll appreciate the irony) I'm doing the stupidest things. I walk into the room and turn the light off :/ I'm fumbling all the time. Typing is a nightmare because I can't remember the sequences of typing and have to type so slowly when I used to be very fast.

Aaaaaaaaarrrrrrrggggghhhhhh!!!!!!! Sorry but I really needed to let that out. Thanks for listening.
Elliephant13
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Re: Can't stand this numbness and muscle cramping anymore :/

Postby jimmylegs » Wed Apr 02, 2014 6:45 am

hi ellie, sorry to hear you're dealing with this. sounds somewhat atypical to me, losing things like temperature sense. so i don't know if anything i have to offer will help. but, i do like to optimize nutrition to help rule out any influence poor nutrient status could be having on the total picture. could there be any reason why diet or lifestyle might be an influence in your case? has any doc done nutrient testing, or referred you to a nutrition specialist?
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Re: Can't stand this numbness and muscle cramping anymore :/

Postby lyndacarol » Wed Apr 02, 2014 7:45 am

Elliephant13 wrote:Hi,

I'm a 38yr old female and I just wish they would give me something for whatever this is!

I already have several auto immune diseases including psoriatic arthritis. For 2 months now I have had whole body numbness, tingling and muscle cramping. My Rheumo says it's MS and so does GP. I see Neuro in 4weeks.

I have barely any sensation in my body and when I do it's travelling sharp tingling. Then my feet start burning or my shoulder muscles or calf cramps. Even my scalp is numb. I can't tell if I need to go to the bathroom because of numbess and I can't feel if I am hungry or full so I don't know how much to eat.

My walking is very difficult and can be painful at times. I just got told I have the balance of a 70 yr old because I'm bumping into everything like I'm drunk and jiggling like a tea bag.

I can't taste anything. I burn my mouth on too hot food. I can't feel the water temp in the shower.
At first it was a novelty to be numb and not feel pain but now it's driving me insane because I can't feel pleasure either! I feel so sad to think that I might never ever feel my partners touch again anywhere.

Almost forgot (you'll appreciate the irony) I'm doing the stupidest things. I walk into the room and turn the light off :/ I'm fumbling all the time. Typing is a nightmare because I can't remember the sequences of typing and have to type so slowly when I used to be very fast.

Aaaaaaaaarrrrrrrggggghhhhhh!!!!!!! Sorry but I really needed to let that out. Thanks for listening.

Welcome to ThisIsMS, Ellie.

It is not uncommon for a person diagnosed with one of the 100+ autoimmune diseases (http://www.aarda.orgThis is now the correct URL for AARDA; sorry for my earlier error) to be diagnosed with a second, or even a third.

Numbness/tingling/pain in the extremities (fingers, hands, arms, toes, feet, legs) is called "peripheral neuropathy." The following suggestions for investigation come from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Of these, I think testing for vitamin B12 (and other nutrients which are often deficient in people with MS) is the first priority. Then, I think testing for gluten sensitivity (celiac disease) is important.

Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

Dr. Amy Myers, M.D. speaks on gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog ("brain fog" would include your last symptoms listed – "the stupidest things"), depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases


And finally, I urge everyone to request a "fasting blood insulin test" – this is NOT the same as a glucose/blood sugar test used to diagnose diabetes. The ideal insulin test result is 3 UU/ML or lower.

We welcome you into our community. We are here to share experiences, ideas, and to listen to whatever you need to say. We are glad you found us.
Last edited by lyndacarol on Wed Apr 02, 2014 4:05 pm, edited 2 times in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Can't stand this numbness and muscle cramping anymore :/

Postby Elliephant13 » Wed Apr 02, 2014 1:34 pm

jimmylegs wrote:hi ellie, sorry to hear you're dealing with this. sounds somewhat atypical to me, losing things like temperature sense. so i don't know if anything i have to offer will help. but, i do like to optimize nutrition to help rule out any influence poor nutrient status could be having on the total picture. could there be any reason why diet or lifestyle might be an influence in your case? has any doc done nutrient testing, or referred you to a nutrition specialist?


Hi, thanks for your reply. I have a wonderful diet and eat a large variety of fruit and veg daily and alternate meats and proteins. I have studied nutrition in the past so I look after myself very well in that way. I don't smoke, don't drink and don't take recreational drugs.

I am a Medical Technician and have had every blood test you can think of. All my vitamins and minerals are good thanks :)
Elliephant13
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Re: Can't stand this numbness and muscle cramping anymore :/

Postby Elliephant13 » Wed Apr 02, 2014 1:51 pm

lyndacarol wrote:
Elliephant13 wrote:Hi,

I'm a 38yr old female and I just wish they would give me something for whatever this is!

I already have several auto immune diseases including psoriatic arthritis. For 2 months now I have had whole body numbness, tingling and muscle cramping. My Rheumo says it's MS and so does GP. I see Neuro in 4weeks.

I have barely any sensation in my body and when I do it's travelling sharp tingling. Then my feet start burning or my shoulder muscles or calf cramps. Even my scalp is numb. I can't tell if I need to go to the bathroom because of numbess and I can't feel if I am hungry or full so I don't know how much to eat.

My walking is very difficult and can be painful at times. I just got told I have the balance of a 70 yr old because I'm bumping into everything like I'm drunk and jiggling like a tea bag.

I can't taste anything. I burn my mouth on too hot food. I can't feel the water temp in the shower.
At first it was a novelty to be numb and not feel pain but now it's driving me insane because I can't feel pleasure either! I feel so sad to think that I might never ever feel my partners touch again anywhere.

Almost forgot (you'll appreciate the irony) I'm doing the stupidest things. I walk into the room and turn the light off :/ I'm fumbling all the time. Typing is a nightmare because I can't remember the sequences of typing and have to type so slowly when I used to be very fast.

Aaaaaaaaarrrrrrrggggghhhhhh!!!!!!! Sorry but I really needed to let that out. Thanks for listening.

Welcome to ThisIsMS, Ellie.

It is not uncommon for a person diagnosed with one of the 100+ autoimmune diseases (http://www.aarda.com) to be diagnosed with a second, or even a third.

Numbness/tingling/pain in the extremities (fingers, hands, arms, toes, feet, legs) is called "peripheral neuropathy." The following suggestions for investigation come from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Of these, I think testing for vitamin B12 (and other nutrients which are often deficient in people with MS) is the first priority. Then, I think testing for gluten sensitivity (celiac disease) is important.

Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:

Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

Dr. Amy Myers, M.D. speaks on gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog ("brain fog" would include your last symptoms listed – "the stupidest things"), depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases


And finally, I urge everyone to request a "fasting blood insulin test" – this is NOT the same as a glucose/blood sugar test used to diagnose diabetes. The ideal insulin test result is 3 UU/ML or lower.

We welcome you into our community. We are here to share experiences, ideas, and to listen to whatever you need to say. We are glad you found us.


Hi,

Thanks for your reply. I have been tested for everything you mentioned. I am a Medical Technician with 15 years experience in Laboratory diagnostic pathology.

The only issues I had were reactive hyperglycaemia ( I manage it with diet easily ) I take great care not to get insulin spikes anymore because I know what it can do to me. That was diagnosed on oral GTT.

I am also coeliac and have been on full rigid gluten free diet for 6 months. I'm very careful about what I eat and only eat what what I have prepared myself. I am aware gluten sensitivity can cause some neuro symptoms but I don't expose myself to gluten contamination. My whole house is gluten free.

There are many other symptoms that I have that I have discussed with my Dr. When I first saw my specialist about a month ago he said OMG you must have MS and put me in hospital. I was going to have full head and spine MRI and LP and Nerve Conduction Studies. I think I felt overwhelmed and was quite cognitively impaired at the time so I booked myself out of hospital and went home :/

Now my mind is clearer I'm kicking myself for not getting sorted then. I was positive it was a virus and would just go away. But here I am and it is still happening. I was very stupid to book myself out.
Elliephant13
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Joined: Wed Apr 02, 2014 12:19 am

Re: Can't stand this numbness and muscle cramping anymore :/

Postby jimmylegs » Wed Apr 02, 2014 3:48 pm

that is great to hear ellie, do you have your own copy of results? i'll assume you are aware of concerns re reference ranges for serum nutrient levels then? such as we're warned of per ismail et al (2010)?
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