Time line ??

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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kmomto10
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Joined: Mon Apr 07, 2014 10:30 am

Time line ??

Post by kmomto10 »

Howdy, sorry we are all hear :sad:

Anyway, I'm Karen am 42 years old, mom to 10 (ages 20 - 2) and live in South Texas.

Saw my GP this morning and pending an MRI of my neck (which has known issues) I am off to a neurologist.

I think her biggest concern is that I have some pretty siginificant hyperreflexia, 3 beats of clonus in my left foot and am having a lot of myoclonus.
My right hand is frequently spasming/clawing and I have weakness and coordination problems with it but....I also have a scar tissue in my ulnar nerve which could be a cause.
I'm fatigued but hello, I have 10 kids :D Although it is a little much. I am usually exhausted and need to lie down every afternoon regardless of how much sleep I get.
I'm not incontinent but I can't easily fully empty my bladder but again, I've had 9 vaginal births, my pelvic floor isn't exactly in great shape.
I'm knocking things over, dropping them and tripping a lot but I've always been a bit of (or a big) a klutz. I broke my foot stepping out my back door.
I can type ok but writing is difficult. my gross grip strength is ok.
I am forgetting words and mixing them up a little more than usual which is frustrating and I can't really think of a reason for that.
I have an autoimmune disease (Hashimotos) and my grandmother had CREST syndrome.
I am totally heat intolerant. My body acts like it's 90 when it is 75. If I take a hot shower my legs are like rubber when I get out, I can barely stand so I take warm showers most of the time but I live in South Texas where it is hot, hot, hot most of the time. I thought it was unfortunate I was drenched in sweat 9 months of the year but not pathologic.
My vision has gone from pretty good to need glasses to pass the vision test to drive in 3 years but I'm over 40 which is when most people

A lot of these things have been going on for a long time, years in some cases. Honestly, until the myoclonus and hyperreflexia got crazy over the last month or so I didn't think much of it all. It was just me and me getting older and having unfortunate scar tissue and things...

So what I am really wondering is what is a typical time frame for testing and diagnosis of MS. Is it days, weeks, months between visits/tests/conclusions or does it vary greatly from region to region..doctor to doctor? Aside from the MRI, physical exam and history and lumbar puncture is there anything else the neurologist will do or suggest?
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jimmylegs
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Re: Time line ??

Post by jimmylegs »

hi there :) have you considered looking at nutrient depletion, given all those entire other human beings you've built to date from your body's resources?!

ms patients have a lot of nutrient issues that are common in the population overall, but on average ms patients are even worse off.

here's a related thread you might find interesting. 2 pages of posts with a happy ending:
http://www.thisisms.com/forum/general-d ... 19575.html

if we just started with the hyperreflexia, spasms and so on, that red flags magnesium status. do you know if you are hitting 600mg of magnesium daily in diet? here's a list if you are not sure: http://www.whfoods.com/genpage.php?tnam ... #foodchart
another decent list http://www.healthaliciousness.com/artic ... nesium.php

magnesium would help with fatigue, but iron is another obvious one to consider:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
a second good iron list http://www.healthaliciousness.com/artic ... f-iron.php
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kmomto10
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Re: Time line ??

Post by kmomto10 »

The first thing I tried was supplementing magnesium. 600mg/day and it has done nothing. I've gotten worse over the time I've added the mag in.

I am so NOT anemic. The only time I've been anemic is after hemorrhaging in childbirth and even then it was never that bad-I think the lowest my HGB ever fell was 8 and change. My H&H is well within normal limits, typical for me is HGB of 12+ and HCT of 36-38. With the thyroid I get regular blood draws and my PCP usually throws in a lipid panel and CBC a couple times a year.

Aside from the occasional sugar binge my diet is pretty decent. Mostly veggies and protein. Coconut oil, olive oil and butter are my fats. Lots of leafy greens, avocado, eggs from my backyard etc...
kmomto10
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Posts: 3
Joined: Mon Apr 07, 2014 10:30 am

Re: Time line ??

Post by kmomto10 »

My D has never been tested and may be an issue. Although I am quite fair and live in TX when I go outside I stay in the shade and if I am in the sun usually wear sunscreen.

Redhead + texas sun = no bueno
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jimmylegs
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Re: Time line ??

Post by jimmylegs »

heya :) your diet sounds very nice :)
what form of magnesium were you taking? have you had a serum test done, to check your absorption? could be short on a co-factor.
the vit D would be worth checking out for sure.
re anemia, is your serum ferritin up close to 80?
how's your daily intake of zinc?

more info on levels to compare yours to here:
http://www.thisisms.com/forum/regimens- ... tml#p15460

serum nutrient levels seen in average healthy controls (all mid to high normal range; ms patients tend to be in the low normal range):

serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL).
serum selenium: two reference ranges found..
..........0.90 to 2.00 µmol/L (adults) http://www.trace-elements.org.uk/trace- ... /selenium/
..........< 0.3 µmol/L (in adult) - supplementation may be required
..........> 2.5 µmol/L (in adult) - possible toxicity
..........1.02 to 1.91 µmol/L, OR 80 to 150 µg/L (molecular weight of Se is 78.96)
serum calcium: just a link to p. 11 for now, more later: regimens-f22/topic2489-150.html#p57111
serum uric acid: aim for 290-300 umol/L (about 5 mg/dL).
serum hemoglobin: at least 13
serum ferritin: i used to go for 100, now I go for 80 because some studies have shown increased disease risk at levels 80 and higher.
..........<18 probably iron deficient
..........18-40 possibly deficient
..........41-100 probably not deficient
..........101-300 not iron deficient
..........>300 possible iron overload
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lyndacarol
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Re: Time line ??

Post by lyndacarol »

kmomto10 wrote:I'm Karen am 42 years old, mom to 10 (ages 20 - 2) and live in South Texas.

Saw my GP this morning and pending an MRI of my neck (which has known issues) I am off to a neurologist.

I think her biggest concern is that I have some pretty siginificant hyperreflexia, 3 beats of clonus in my left foot and am having a lot of myoclonus.
My right hand is frequently spasming/clawing and I have weakness and coordination problems with it but....I also have a scar tissue in my ulnar nerve which could be a cause.
I'm fatigued but hello, I have 10 kids :D Although it is a little much. I am usually exhausted and need to lie down every afternoon regardless of how much sleep I get.
I'm not incontinent but I can't easily fully empty my bladder but again, I've had 9 vaginal births, my pelvic floor isn't exactly in great shape.
I'm knocking things over, dropping them and tripping a lot but I've always been a bit of (or a big) a klutz. I broke my foot stepping out my back door.
I can type ok but writing is difficult. my gross grip strength is ok.
I am forgetting words and mixing them up a little more than usual which is frustrating and I can't really think of a reason for that.
I have an autoimmune disease (Hashimotos) and my grandmother had CREST syndrome.
I am totally heat intolerant. My body acts like it's 90 when it is 75. If I take a hot shower my legs are like rubber when I get out, I can barely stand so I take warm showers most of the time but I live in South Texas where it is hot, hot, hot most of the time. I thought it was unfortunate I was drenched in sweat 9 months of the year but not pathologic.
My vision has gone from pretty good to need glasses to pass the vision test to drive in 3 years but I'm over 40 which is when most people

A lot of these things have been going on for a long time, years in some cases. Honestly, until the myoclonus and hyperreflexia got crazy over the last month or so I didn't think much of it all. It was just me and me getting older and having unfortunate scar tissue and things...

So what I am really wondering is what is a typical time frame for testing and diagnosis of MS. Is it days, weeks, months between visits/tests/conclusions or does it vary greatly from region to region..doctor to doctor? Aside from the MRI, physical exam and history and lumbar puncture is there anything else the neurologist will do or suggest?
Welcome to ThisIsMS, Karen (kmomto10).

To answer your questions… There is NO typical timeframe for diagnosing MS – for some people it is done in weeks; for me, it took a couple years; I know one case that took 14 years. It varies from case to case.

MS does not have a unique set of symptoms; the same symptoms are common to many different conditions. You may find your symptoms are similar to many in the following video useful for patients: "Everything You Want Your Doctor to Know about Vitamin B12"



This is a 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

Even in the blood tests suggested by the University of Chicago for a neurological exam, the first one listed is a test for vitamin B12:

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
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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