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Do I have MS?

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Oddity
Oddity

I have been having several issues with my health over the last 7-9 months.  i was totally healty prior to this.  I am a 46 year old male.  I currently have an upper body tremor.  It is more so pronuonced when I pick up items or hold something.  At times it is worse to the point people have asked me why I am shaking.  I have twitching in both my calves.  This is not constant, but I find it occuring quite often throughout the day.  Some nights I go to sleep but then I am woken up by this sensation around 4-5 am and then I can not go back to sleep.  When I lie in bed on my back I sometimes have a strange ache in my buttocks area around my anus.  It sometimes wakes me up as well.  Another issue I am having is after I am on my feet most of the day or if I go for a jog about 2 - 3 hours later I get a weird ache in my groin area that then leads to a deep bone pain in both legs.  This is preceded by the calf twitching. 

Tests to date: Labwork for lymes negative (still waiting for Western Blot results though),  Vitamin B levels normal, Vitamin 39 a little low, SED and other autoimmune blood tests normal.  No diabetes or thyroid issues.  I did test positve for herpes simplex 1 and negative for simples 2.  EBV was positive but old infection.  Brain MRI was abnormal with white matter lesions found in the periventrical and subcortical region.  Numerous for my age not consistent with MS cannot r/o demyleineating disease or small vessel disease.  I do not have hypertension and I don't smoke.  I have had high tryglicerides on occasion.  The 2nd neurologist I saw went over the MRI images with me.  There are no large lesions.  They are so small you have to look close on the MRI, but the neurologist did say I had quite a few.  The exact number was never mentioned.  Spinal tap was normal but had a protein level of 45.  Norm is 0-44.  First Neuro I saw said this was not high.  EMG of legs normal (2 of these done.  One in August and one last week). 

I must mention also that I have been feeling a bit run down lately, but I seem to always have a lot of energy.  I feel the most unwell around 2 or 3 in the afternoon.  I think this may be due to the fact that I am getting out of shape since I have not worked out vigorously in the last 6-7 months.  This is creating a lot of anxiety.  Some of my friends and relatives think the anxiety is creating a lot of these symptoms.  I appreciate anyone taking the time to review my post.  Thank you.

0 likes, 10 replies

10 Replies

  • TURNER55
    TURNER55 Oddity

    Posted

    I would wait and see what the neurologist says.
    • Oddity
      Oddity TURNER55

      Posted

      Yes, she is redoing a bunch of the tests the first neurologist dropped the ball on.  She says I may also need to redo the spinal tap because the first neuro did not order the correct tests on that as well.  Everything I have read on blogs makes it sound like MS symptoms come and go.  My issues have been fairly constant for the last several months.  I don't really get headaches or have any issues with my vision as well.  It seems most newly diagnosed people with MS have these two common issues.  The neurologist also stated I do not have parkinsons.
  • TURNER55
    TURNER55 Oddity

    Posted

    Just do what the neurologist tells you do do.
    • Oddity
      Oddity TURNER55

      Posted

      I just received my Western Blot Lymes Disease results.  Everything was normal accept the IGG P41 ab was present or abnormal.  I have not spoken to the neurologist about this yet.  Maybe I am dealing with lymes?
  • tracy35015
    tracy35015 Oddity

    Posted

    You say your B12 was normal but did not mention the number. If it was below 450 ng/mL it is low, traditional doctors use a scale that is far too low. Typically they say 200-450 is normal, mine was 196 and I was severely deficient and got permanent nerve damage. Anything below 450 is known to cause neurological damage. Did you get your MMA (methylmalonic acid) tested? If it is elevated then you are deficient in B12. Get your MMA tested if your B12 is below 450.

    Are you experiencing any other symptoms of B12 deficiency? Fatigue (your afternoon tiredness qualifies), hair loss, enlarged tongue (do you bite it when eating?), ringing ears, fingernail moons disappear, palpitations, numbness in hands or feet, burning feet, balance problems, unusual sleep patterns.

    • Oddity
      Oddity tracy35015

      Posted

      Hi Tracy,

      The first neurologist I went to tested my Vitamin B levels via a blood test which was serum only.  My B12 was high at 954 pg/ML  211-946 is normal.  I was told this is good.  The one that was alarmingly high was the B6.  It was 64.4 with a normal range of 5.3-46.7.  The neurologist did not seem very concerned about this.  I then went to a naturopath doctor.  She was very thorough and ordered a special blood test.  Supposedly this looks at everything from a cellular level.  Here they found my Vitamin B levels all normal with my B1 a bit low.  These tests are supposed to be the gold standard because they don't just look at blood serum which I was told is a bad test.  Something about if you eat something high in vitamin b prior to the test it will give a bad acute read.

      Anyhow I do experience a bit of burning in my feet especially when my calves are twitching. Sometimes I get sharp twitches in my thighs as well.  My sleep patterns are a mess because I have a lot of anxiety and my leg issues tend to wake me up in the early morning.  I am currently taking 2 phyto multi vitamins a day, powdered calcium, powdered magnesium, 6k-10k IU liquid Vitamin D3, potasium, and 3000mg DHA and EPA liquid fish oil a day.  These are all at the advice of the naturopath.  I experienced hair loss in my 20's and now shave my head.  I probably should have gone to see the naturopath in my 20's because hair loss is a sign of other issues so this naturopath tells me.  Not sure why my regular doctors weren't as thorough as this naturopath has been.  sad  I hope it's not too late.

    • tracy35015
      tracy35015 Oddity

      Posted

      I have read that high B6 can cause some neurological issues. Yours isn't that elevated though. Make sure you aren't getting more than 25 mg per day and preferably a lot less since yours is above normal. Check all sources -- multivitamins, energy drinks, etc. It is possible yours was high if you had B6 within a few days of your testing. I don't know how long you have to be off it for accurate results, you'd have to ask the doctor who ordered the test.

      Have you been tested for celiac, or tried eliminating gluten from your diet? Have you had any back problems? Also look at your family genetics, do you have close relatives with autoimmune problems? These might give you some clues.

      Sounds like you are in good hands. Naturopaths do seem to be more thorough, perhaps because of their holistic approach. In my state they are limited to what they can do and prescribe but they can order many different tests. Most patients pay out of pocket for their services so there is an expectation of getting good value for the cost.

    • Oddity
      Oddity tracy35015

      Posted

      The test did a thorough job of testing all my vitamin b levels.  All were normal accept Vitamin B1 was low.  I was tested for Celiac and that was negative.  I have eliminated a lot of things from my diet, very little sugars, no coffee, chocolate, nuts, etc.  Trying to eat very healthy.  The naturopath has been good, but she is limited in what she can do.  I am thankful for her advice with the vitamins, magnesium, vitamin D, calcium, fish oil, etc.  This may be out of her scope though, unfortunately. 

      I did just get back my Lyme's Western Blot.  There was one abnormality where the IGG P41 ab was present/abnormal.  I have yet to talk to my neuro about this, but I have read on the internet that this may require further testing.  The plot thickens. 

  • bic24773
    bic24773 Oddity

    Posted

    I've never had a spinal tap I had my diagnosis on MRI I did have wvoked potentials. My mother had her diagnosis on MRI and refused spinal tap and her nice neuro agreed it was a procedure she didnt need, my eldest sister has lesions and has had spinal problems but no ms diagnosis shd hot her scan living in SA my other sister was diagnosed Parkinson's but it was probably ms, she used to shake. It's your body your life be firm about diagnosis. Q10 can help you. Good luck ...its not a death sentence its aife complication.
    • Oddity
      Oddity bic24773

      Posted

      I've heard about q10 and actually have some.  Maybe I will try it.  Thank you.
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