Long term MS, less than a year with Official Dx

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Long term MS, less than a year with Official Dx

Postby GonetotheDogs » Tue Jan 02, 2018 6:36 pm

Hello all,

Forums have been a valuable resource, providing loads of information, but have not entirely helped with my conflicted feelings and ambivalence towards having MS.

I was Officially Diagnosed about eight months ago, ultimately by two unaffiliated neurologists. I have "a great many lesions," but have had a (mostly) benign history of symptoms, and have exhibited few signs during neurological exams. This is changing now as I reach my early 60's. I believe I had symptoms of MS as early as a girl of four years - some symptoms have bothered me, coming and going, for as long as I can remember.

Over the years I have presented myself in doctor's offices and have had my concerns brushed away. Usually I'd experience a symptom/s like: numbness, weakness, a paresthesia, a foot drop, bladder issues, nerve pain, double vision, crushing fatigue; and make an appointment. By the time of the appointment, the symptom would vanish, or simply remain invisible.

I have been told a few times that I was having "atypical migraines." Doctors would shrug. Family, as well as doctors, have made little of, or mocked, my description of what I was experiencing. I heard many times that it is all in my head - (it is) - and have been accused of malingering or seeking attention.

I have grown sensitive to these accusations - and had, myself, become skeptical of my own suspicions regarding my physical and cognitive experience of MS. Reading forums, I realized there are a great many people who believe they have MS but have not been diagnosed.

In the early 2000's, I was going through a very stressful time and symptoms became less curious and more troubling. Fairly sure I had MS, I convinced my doubting primary care doctor to give me a reference to see a neurologist. I chose an MS specialist and had a positive MRI. I was told I probably had MS. He then did a lumbar puncture and evoked potential testing, none of which were positive for MS. A subsequent MRI did not show any new disease activity. The neurologist seemed less sure I had MS, or at least that was the way I interpreted the situation. My family and primary doctor still insisted that I could not have MS.

So I stopped thinking about this. I moved and did not discuss MS with new doctors. I mentioned leg weakness several times and was told to exercise. My symptoms continued to come and go, but as I have grown older, some symptoms have grown more intense and troubling. I went to a urologist for help with bladder dysfunction and she asked if I had MS, saying my symptoms sound like MS.

So I went to see another neurologist - again, with a referral from another doubting PCP. The neurologist scoffed at my belief that I have MS, but then my MRI came back covered in lesions typical of MS. He didn't believe treatment was warranted - due to my "advanced age" - saying that the immune system slows down with age and my disease would just go away by itself.

As my symptoms are worse and becoming more limiting, I went to another neurologist (MS specialist) with MRI in hand. After a ton of blood tests, an MRI of my spine, and thorough exams, i am on daily injections of Glatimer acetate. I am coming to terms and banishing my own self-doubts -

- but now have to find a new neurologist as my treating doctor has left her practice. (So frustrating!)

Sorry - too long - but I must thank you all for sharing your experiences, so many of which have been so helpful to me in this journey.
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Re: Long term MS, less than a year with Official Dx

Postby jimmylegs » Tue Jan 02, 2018 7:01 pm

hi and welcome to the forum. it can certainly be frustrating trying to pin down what could be going on.
by the sounds of it, no one ever referred you to a dietitian?
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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Re: Long term MS, less than a year with Official Dx

Postby GonetotheDogs » Tue Jan 02, 2018 7:20 pm

hello and thanks for your response.

Yes to dietitian, and mostly I was advised on how to lose weight. I take D3, prescribed by the neurologist. I was treated for a B12 deficiency some years ago. I had thought maybe my lesions were caused by the B12 deficiency but symptoms continue and change although my B12 levels remain on the high side for a long time now.

I had gut problems for a long time, was diagnosed with ulcerative colitis. I have since discovered taking care to eliminate all wheat, barley, and rye from my diet keeps my gut free from inflammation and its symptoms. I have not eaten wheat products for years now. That means no fast food and very little commercially processed food which is an all-round good thing.

I am very interested in the role of the microbiome in MS and similar conditions.
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Re: Long term MS, less than a year with Official Dx

Postby jimmylegs » Tue Jan 02, 2018 7:49 pm

hi again. what's the detailed d3 regimen if i may ask? are any cofactors involved?

any relevant nutrient tests done besides d3 and b12?

re gut issues, do you have a serum zinc level on file? gluten and phytate foods cause problems with zinc status in particular. avoidance can help, but it's worth knowing whether your level is consistent with an ms patient's level, or that of an average healthy control.

whole foods are the best!
nutrients influence the habitat conditions for microbiota in the GI tract. they haven't dug in on this much in humans yet, but chickens and pigs certainly

eg

Chronic zinc deficiency alters chick gut microbiota composition and function (2015)
http://www.mdpi.com/2072-6643/7/12/5497/htm

The effect of zinc oxide supplementation on the stability of the intestinal flora with special reference to composition of coliforms in weaned pigs (1999)
https://dl.sciencesocieties.org/publica ... /89/8/2430

Increased dietary zinc oxide changes the bacterial core and enterobacterial composition in the ileum of piglets (2011)
https://dl.sciencesocieties.org/publica ... /89/8/2430

i'll take essential nutrients before a fecal transplant any day!
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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jimmylegs
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Joined: Sat Mar 11, 2006 4:00 pm

Re: Long term MS, less than a year with Official Dx

Postby GonetotheDogs » Wed Jan 03, 2018 2:39 pm

Jimmylegs, I have not had extensive testing for dietary deficiencies. I don't know if my doctor would order these based on my request -- although these topics are something I will bring up when I see a new neurologist.

co-factors? No. I did note somewhere that B12 supplementation can lead to magnesium deficit (perhaps one of your posts?).
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Re: Long term MS, less than a year with Official Dx

Postby jimmylegs » Wed Jan 03, 2018 3:16 pm

for ms, there are a few good ones to ask for. serum b12 and d3 are tip of the iceberg but usually the end of the road in clinical care - to date.

with ms there's a case for knowing serum magnesium, serum zinc and serum copper status. the results will come back 'normal' but you want a copy of the detailed specifics. when i had my first zinc test done, my level was single digits (deficient in some local labs, bottom of the normal range in others) but healthy control values sit in the high teens. i could actually physically (not just cognitively) feel the brain damage back then. all better now!

i imagine there will be a serum ferritin result somewhere in your records already, since it's fairly standard practice to measure that one. good to have an idea of status.

it's the d3 interaction you want to watch for where potential mag deficits are concerned.

what were the d3 regimen details to date, iima?
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
User avatar
jimmylegs
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Posts: 11119
Joined: Sat Mar 11, 2006 4:00 pm


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