If it's MS why so atypical symptoms?

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

If it's MS why so atypical symptoms?

Postby j3apps44 » Tue Nov 26, 2013 1:00 pm

Hello all,
A couple months ago I was diagnosed with MS based on MRIs and spinal tap and a few symptoms. MRIs did show lesions in lumbar area of spinal cord and a few in brain. Neurologist said he wasn't worried about brain ones. Thing is, the symptoms I originally had I still have and it's been 7 months. So here's the rub:
Started about 11 months ago when I noticed my butt cheeks getting sore after just 30minutes sitting. [I had a desk job.] This soreness continued but wasn't unbearable, just noticeable. Then about five months later I had difficulty going pee. Went to doc, he prescribed drugs to relax bladder. Then about a week later I noticed pins and needles in right foot and over several days it got worse and worse and started to go up leg and rt foot swelled up. Went to ER, had MRIs and spinal tap and many blood tests, along with steroids. This is when I was told I had lesions. [Peeing problem went away, and wasn't on bladder relax drug while in hospital] After 3 days at hospital went home. Foot swelling went away but instead foot got red during showering or too much walking on it. Pins and needles sensation continued and is continuing. Also have a bit of Lhermitte sign. This is it for me: I haven't had any double vision, balance problems, coordination problems, strength loss, pins and needles in other places. Just pins and needles in right foot, redness of right foot if too much activity, and Lhermitte sign. Ohh, I really can't do much physical activity because that worsens right foot pins and needles sensation.

I had B12 checked--it's okay. My diet is, and has been for over 30years, a Mediterranean diet, so lots of fresh fruits and veggies and whole grains. I'm slim and active, I mean I was active.

Some other tidbits: I cannot sleep/lie on my right side--it causes right foot distress. I've had two discectomies in lower back. All MRIs and docs say there's nothing wrong down there.

So as I said, main Neurologist said I have MS. I went to another Neurologist and he said I have atypical symptoms for MS. What do you all think and say?

thanks for your input
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Re: If it's MS why so atypical symptoms?

Postby lyndacarol » Tue Nov 26, 2013 3:48 pm

j3apps44 wrote:Hello all,
A couple months ago I was diagnosed with MS based on MRIs and spinal tap and a few symptoms. MRIs did show lesions in lumbar area of spinal cord and a few in brain. Neurologist said he wasn't worried about brain ones. Thing is, the symptoms I originally had I still have and it's been 7 months. So here's the rub:
Started about 11 months ago when I noticed my butt cheeks getting sore after just 30minutes sitting. [I had a desk job.] This soreness continued but wasn't unbearable, just noticeable. Then about five months later I had difficulty going pee. Went to doc, he prescribed drugs to relax bladder. Then about a week later I noticed pins and needles in right foot and over several days it got worse and worse and started to go up leg and rt foot swelled up. Went to ER, had MRIs and spinal tap and many blood tests, along with steroids. This is when I was told I had lesions. [Peeing problem went away, and wasn't on bladder relax drug while in hospital] After 3 days at hospital went home. Foot swelling went away but instead foot got red during showering or too much walking on it. Pins and needles sensation continued and is continuing. Also have a bit of Lhermitte sign. This is it for me: I haven't had any double vision, balance problems, coordination problems, strength loss, pins and needles in other places. Just pins and needles in right foot, redness of right foot if too much activity, and Lhermitte sign. Ohh, I really can't do much physical activity because that worsens right foot pins and needles sensation.

I had B12 checked--it's okay. My diet is, and has been for over 30years, a Mediterranean diet, so lots of fresh fruits and veggies and whole grains. I'm slim and active, I mean I was active.

Some other tidbits: I cannot sleep/lie on my right side--it causes right foot distress. I've had two discectomies in lower back. All MRIs and docs say there's nothing wrong down there.

So as I said, main Neurologist said I have MS. I went to another Neurologist and he said I have atypical symptoms for MS. What do you all think and say?

thanks for your input


Welcome to ThisIsMS, j3apps44.

Compare this description of a neurological exam to your experience. By the way, the "pins and needles sensation" you described is also known as peripheral neuropathy.

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


Especially important is this section on blood tests:


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 (You said the B12 was checked.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important– you eat "whole grains." A mannitol-lactulose test for Intestinal Permeability might be a good idea too.)
Lyme disease
HIV/AIDS
Hepatitis C and B
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Re: If it's MS why so atypical symptoms?

Postby jimmylegs » Tue Nov 26, 2013 6:32 pm

hey there, what was the actual b12 result, if i may ask?
diet sounds awesome :) might not quite be a match for your activity level though.
if you think you could stand to rule out a few other nutrient issues, i would refer you to the link (you have to cut and paste it unfortunately) in my auto signature below.
feel free to ask questions :)

ps potentially related post from earlier this month (links to athletic nutrient depletion):
post217736.html?hilit=athletic#p217736
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Re: If it's MS why so atypical symptoms?

Postby j3apps44 » Tue Dec 03, 2013 2:12 pm

Dear lyndacarol and jimmylegs,
I hope your respective Thanksgivings were fulfilling and pleasing.

Thanks for responding--you two do seem to be the basic respondents, right?

I'll address some of your comments individually.
lyndacarol--while in hospital for 3 days I was tested for diabetes, thyroidism, Lyme disease, HIV/AIDS, and numerous other infectious diseases. All were negative or nominal or whatever. I'm unsure if liver function was tested. I have been tested for Celiac disease and gluten intolerance--both were negative. I've also undergone vascular tests such as ankle-brachial index (ABI)--that was okay, i.e. nothing awry or amiss. I also have had done a nerve conduction study and initial report from doc doing it was that it was fine. I await a further report when I see Neurologist I've been seeing.

jimmylegs--my B12 level was 309. A bit low according to some, I've since been taking B12 supplements, the methyl type. I also take a multi-vitamin/mineral and have on a regular basis for around 5 years. As you said, my diet is 'awesome'. BTW, I eat organic as much as possible--I go to Farmers Markets and have been for over 30 years. Actually, I started to eat organic in 1977, not to mention I've often had a garden and have grown various veggies. Whereas I'm aware of various postings/forums where people said they changed their diet to Wahls or Swank or ____________ and it has helped them, I have this to say about such postings: people never say what their diet was before. My diet has been, as mentioned, a Med. diet for a long time so if I was to change my diet to something 'better', I don't know what it would be. Also, I'm not and haven't been a regular eater of meat so I have no interest in eating meat 3times a day a la Wahls. Besides, I don't know how one can afford such a diet since ALL meat is supposed to be free range, organic, natural, etc. As mentioned, I go to Farmers Markets and such meat, which I do buy on occasion, ain't cheap.

Then there's the Vit. D gig. I live in lower part of N. California, so sun shines a lot. My exercise was outside--walking, bicycling, gardening, along with chores like lawn care, washing cars, etc. Not to mention in my younger days I worked outside in the 'trades'--roofing, framing, ditch digging, etc.

To be honest, due to my symptoms being very very narrow--pins and needles in my right foot [oh yeah, Lhermitte sign] I still have doubts about diagnosis of MS. I presently have Tecfidera but haven't started it yet. Have been taking tegretol for pins and needles, that drug has helped some but I'm not going to say it's been a lot.

and so it goes,,,,,,,,,,,,,,
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Re: If it's MS why so atypical symptoms?

Postby CaliReader » Tue Dec 03, 2013 3:03 pm

You asked, so here's my two cents.

Bladder issues are typical for ms. Pins and needles are also typical. L'hermittes is common. None of them are uniquely ms, but all three together is the sort of combination that could be ms, since the mark of the disease is the damage in many parts of the nervous system at once causing multiple lesions and multiple symptoms.

You could get a third opinion, from an ms specialist neurologist. If you have ms, the good news in your case is that your issues are so few right now. You might be one of the lucky ones who would never have been diagnosed without an mri machine to confirm the damage. I can't advise you re whether to take meds. That's your choice. If you do decide to take Tecfidera, I would read carefully the advice here on reducing side effects.

Good luck.
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Re: If it's MS why so atypical symptoms?

Postby jimmylegs » Tue Dec 03, 2013 6:40 pm

ah, low meat.. that explains the b12. try to keep it at least 500.
now, low meat + whole grains prompt me to ask for a three day food/fluid/meds/supplements diary.
I could look for combinations that might be contributing to depletion in combination with your activity level.
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Re: If it's MS why so atypical symptoms?

Postby j3apps44 » Wed Dec 04, 2013 1:24 pm

CaliReader, two or five cents or even a buck's worth are all appreciated.

The Neurologist I've been seeing since early summer is a MS Specialist, and is known in my area as one so I reckon that's worth something, eh?

I've been reading about side effects of Tecfidera, along with all the other drugs. I think some of them have worse side effects, like Avonex. I understand that Copaxone is reasonably benign and is the tried and true one but to be honest I don't have much fatty tissue to stick a needle in--and that isn't something new, that's just me--so I've scratched that one off the list.

hi ho,
J3



CaliReader wrote:You asked, so here's my two cents.

Bladder issues are typical for ms. Pins and needles are also typical. L'hermittes is common. None of them are uniquely ms, but all three together is the sort of combination that could be ms, since the mark of the disease is the damage in many parts of the nervous system at once causing multiple lesions and multiple symptoms.

You could get a third opinion, from an ms specialist neurologist. If you have ms, the good news in your case is that your issues are so few right now. You might be one of the lucky ones who would never have been diagnosed without an mri machine to confirm the damage. I can't advise you re whether to take meds. That's your choice. If you do decide to take Tecfidera, I would read carefully the advice here on reducing side effects.

Good luck.
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Re: If it's MS why so atypical symptoms?

Postby j3apps44 » Wed Dec 04, 2013 1:31 pm

jimmylegs wrote:ah, low meat.. that explains the b12. try to keep it at least 500.
now, low meat + whole grains prompt me to ask for a three day food/fluid/meds/supplements diary.
I could look for combinations that might be contributing to depletion in combination with your activity level.


Do you you mean B12 level of 500 in blood? If yes, what measurement? (picograms per milliliter?http://www.nlm.nih.gov/medlineplus/ency/article/003705.htm) Not sure how I'm going to track my level of B12 in my blood since I can't get blood tests on any regular basis.

How about nutritional yeast?

You want me to provide you a 3day food/fluid/meds/supplements diary? You're willing to evaluate that?
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Re: If it's MS why so atypical symptoms?

Postby jimmylegs » Wed Dec 04, 2013 1:57 pm

hi yep granted I was assuming your 309 was in pg/mL and that would be the units for the 500 target too.

the number is lower pmol/L (what my local lab uses) - for that target I just multiply by 0.738. I use 500 pmol/L anyway, to be on the safe side.

I would just ensure your intakes of b12 and its various cofactors are well above the recommended daily amounts. RDAs are for healthy normal maintenance - not high enough for athletes. esp symptomatic athletes. and certainly not for patients who often need therapeutic 'building' ,once you get a look at their bloodwork.

so with b12, if you can get a daily 1000mcg sublingual methylcobalamin dose in you, you should be all right BUT you do not want to ignore or disregard the interactions that would typically occur in whole foods. that's where the attention to cofactors comes in. so you don't end up having to take 2000mcg or 5000mcg trying to keep a b12 level up, while disregarding all the interrelated systems stuff that is supposed to be going on with it.

if you can manage blood tests once a year it's better than nothing. you could choose the end of winter if you wanted to get the worst case scenario for vit d3 status.

now as for nutritional yeast, I have never yet seen an experiment evaluating dose response for that. can't hurt to use it - I just couldn't say how effective it would be at keeping the b12 levels high enough for good cognitive function. it might be enough to keep the more in your face physical b12 deficit symptoms at bay though - the numbness and weakness etc. personally, I never took those symptoms seriously enough back when they were still reversible. too late now :S

anyway yes re the diary, I should be able to spot any glaring issues pretty quickly, if you provide it. you can post it here or send it via private message or email (see my user profile details). the more detailed and specific you can be re food items, serving sizes, combinations, and timing, the better. for supplements the dosage, forms, combinations and timings are key too.
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Re: If it's MS why so atypical symptoms?

Postby j3apps44 » Tue Dec 10, 2013 10:51 am

Okay, will start on my 3day diary of my food & supplements intake. Thank you.

jimmylegs wrote:hi yep granted I was assuming your 309 was in pg/mL and that would be the units for the 500 target too.

the number is lower pmol/L (what my local lab uses) - for that target I just multiply by 0.738. I use 500 pmol/L anyway, to be on the safe side.

I would just ensure your intakes of b12 and its various cofactors are well above the recommended daily amounts. RDAs are for healthy normal maintenance - not high enough for athletes. esp symptomatic athletes. and certainly not for patients who often need therapeutic 'building' ,once you get a look at their bloodwork.

so with b12, if you can get a daily 1000mcg sublingual methylcobalamin dose in you, you should be all right BUT you do not want to ignore or disregard the interactions that would typically occur in whole foods. that's where the attention to cofactors comes in. so you don't end up having to take 2000mcg or 5000mcg trying to keep a b12 level up, while disregarding all the interrelated systems stuff that is supposed to be going on with it.

if you can manage blood tests once a year it's better than nothing. you could choose the end of winter if you wanted to get the worst case scenario for vit d3 status.

now as for nutritional yeast, I have never yet seen an experiment evaluating dose response for that. can't hurt to use it - I just couldn't say how effective it would be at keeping the b12 levels high enough for good cognitive function. it might be enough to keep the more in your face physical b12 deficit symptoms at bay though - the numbness and weakness etc. personally, I never took those symptoms seriously enough back when they were still reversible. too late now :S

anyway yes re the diary, I should be able to spot any glaring issues pretty quickly, if you provide it. you can post it here or send it via private message or email (see my user profile details). the more detailed and specific you can be re food items, serving sizes, combinations, and timing, the better. for supplements the dosage, forms, combinations and timings are key too.
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Re: If it's MS why so atypical symptoms?

Postby jimmylegs » Tue Dec 10, 2013 3:20 pm

sounds good i'll keep an eye out
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