I'm in Limbo land. Should I see a neurologist?

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

I'm in Limbo land. Should I see a neurologist?

Postby tashs » Wed Jul 05, 2017 6:21 pm

Hi all.

I was dx with Mixed Connective Tissue disease (un medicated by choice) last August after a few years of different symptoms. But over the last 6 months or so I have had symptoms of bugs on my skin, weird vibrating feelings in different parts of my body, and my groin vibrated for about 3 weeks then went numb, but is now normal, and just recently a numbness feeling on the right side of my face that comes and goes, and it may be the whole side or just smaller area's. It was on the front of my neck for hours the other day, but then went away. I have chronic neck pain all the time. Oh and when I'm really bad I have severe memory or speech issues or just do weird stuff.
I had an MRI done without contrast about 5 weeks ago that showed to small white 'foci' in the neck near brain stem, but brain was fine. The report said it does not confirm demyelination but Dr said they are not ruling it out and they will wait and see and re test in 12 months. This was done my a specialist GP.
I have no idea what symptoms could be MCTD or even that is what I have and maybe MS instead.
Question is - Should I be seeking a second opinion with a Neuro or just wait out the 12 months and see?

Any advice will be very much appreciated.
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Re: I'm in Limbo land. Should I see a neurologist?

Postby NHE » Wed Jul 05, 2017 9:34 pm

Welcome to ThisiIsMS tashs,
What tests have you had done so far? For example, a vitamin B12 deficiency can cause many neurological symptoms that mimic MS so it's one of the first things that should be ruled out by blood tests.
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Re: I'm in Limbo land. Should I see a neurologist?

Postby tashs » Wed Jul 05, 2017 11:31 pm

Hi,

Last bloods show Vitamin B12 serum just under normal range and Vit B12 active within normal range. Vit D was low and I have been taking 4000 IU per day since as directed.
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Re: I'm in Limbo land. Should I see a neurologist?

Postby NHE » Thu Jul 06, 2017 12:19 am

tashs wrote:Last bloods show Vitamin B12 serum just under normal range and Vit B12 active within normal range. Vit D was low and I have been taking 4000 IU per day since as directed.


Do you have the numbers for your B12 and D3 tests? A full B12 assessment also includes tests for methylmalonic acid (MMA), red blood cell (RBC) folate and homocysteine. Did you have blood tests for those as well? Though, if you're low and have neurological symptoms, then it would be best to supplement to get your numbers between 500-1000 pg/mL B12.

Background: Most laboratory ranges for B12 span from about 200-800 pg/mL. The lower end of this range is much too low to be classified as 'normal' especially if you're experiencing neurological symptoms.

A sublingual methylcobalamin supplement would be best. You'll need a high dose to correct a deficiency. Look for one containing 1000-2000 micrograms (µg). Consider taking methylfolate as well since B12 and folate work together.

You may wish to read the following discussion topic for for information. natural-approach-f27/topic24857.html

Lastly, don't forget to take a magnesium supplement with your D3. Look for one of the more absorbable forms such as magnesium glycinate or magnesium citrate. Vitamin D3 uses magnesium as a cofactor at nearly every step in its biochemical processing by the body. Long-term supplementation of D3 at high levels without taking magnesium can lead to a magnesium deficiency resulting in increased muscle spasticity. Take the D3 with a meal that includes fat to maximize absorption and take the magnesium in split doses, half with your D3 and half at a time separate from your D3.
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Re: I'm in Limbo land. Should I see a neurologist?

Postby tashs » Thu Jul 06, 2017 3:57 pm

Wow thank you so much, this information is amazing.

On the last labs I had ( I have actually had more since this but can not find them, Dr may still have them) - My Vit B12 levels were Serum Vit B12 246 pmol/L (>260) Serum Folate 16.5 nmol/L (6.5-45) Serum Active 49 pmol/L (>30)
I'm in Australia so reporting may be different to wherever you are.

I am currently looking at Magnesium and want to make sure I am getting the right one. I have several other AI diseases (Ceoliac's, Graves and MCTD primarily Lupus)
I was or have never considered MS as part of my symptoms, but a friend who has been Dx recently was concerned that a lot of my symptoms were the same as hers and really wanted me to let the Dr know what was going on. I have so many other symptoms and it almost feels like news stuff keeps turning up daily.
Anyway my friend does not think I should wait 12 months but, that I should be seeing a Neuro now.

I will start with the suggestions you have mentioned and keep fingers crossed.

Thanks again
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Re: I'm in Limbo land. Should I see a neurologist?

Postby NHE » Thu Jul 06, 2017 5:58 pm

tashs wrote:On the last labs I had ( I have actually had more since this but can not find them, Dr may still have them) - My Vit B12 levels were Serum Vit B12 246 pmol/L (>260)

Your B12 level at 246 pmol/L converts to 333 pg/mL. This is in a gray area where a diagnosis of deficiency may be dependent on your current symptoms in combination with you blood tests. Moreover, the CNS can be deficient in B12 when values fall below 500 pg/mL. You may wish to read the book "Could It Be B12? An epidemic of misdiagnoses" by Sally Pacholok and Jeffrey Stuart.

http://b12awareness.org/could-it-be-b12 ... a-release/
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Re: I'm in Limbo land. Should I see a neurologist?

Postby KatC » Mon Jul 31, 2017 4:21 am

This thread should be sticky. It answered to many important questions! Thanks NHE
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Re: I'm in Limbo land. Should I see a neurologist?

Postby tashs » Tue Aug 01, 2017 12:11 am

Hi NHE,

I have started B12 complex as I have just had more bloods done and the B12 was still low. 224pmol/L. I have also started a magnesium. And I have also decided to start the plaquenil. I have been on all of this for 1 week now so I will keep you updated as to how it all turns out. My GP has also decided that I should not be waiting to see a Neuro, so I am now on the waiting list, which could be 12 months or more anyway.

Thank you for all of the advice, I would never have known any of this otherwise :)
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Re: I'm in Limbo land. Should I see a neurologist?

Postby jimmylegs » Tue Aug 01, 2017 2:45 am

hi t :)

good to see you're working on b12, d3 and now magnesium. which form of magnesium are you taking iima É (ugh keyboard whyyy) also how many milligrams per day of magnesium are you getting from your supplementÉ

also are you dividing your daily mag intake from supplements into two portions and taking half at the same time as your d3 and half separateÉ

if so, great - in this way you can give the d3 some mag to work with when it goes in, and with the second dose you can provide mag to your bodyès other processes without interference from simultaneous d3 intake.

there are a number of other important nutrients to consider when dealing w ms. the easiest way to address these without testing or diet analysis is to add a high quality multi vit min for active lifestyles to your regimen. if you have the time and energy, testing is more informative. see user zyklonès èheeloè topic under introductions for an example of a user making good use of a wise range of blood tests to inform his regimen. hope that helps :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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