While I wait....

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

While I wait....

Postby Kash0419 » Mon Feb 06, 2017 10:49 am

Hi there! I am new to this forum!
I'm currently being evaluated for MS so I don't have a diagnosis yet. I have seen two neurologists. One of them dismissed me after I had normal MRIS. (Thanks Kaiser) the second one I'm seeing (no longer with Kaiser) specializes in MS. I have had symptoms on and off for 3 years now. Each time the symptoms come back with another added one. They also seem to last longer during each "episode".
I have tingling/weakness/ and sometimes complete numbness in my legs(predominantly my righ). Trembling in my muscles in all extremities. Pain. A tight squeezing sensation around my ribs where my bra line is. This squeezing sometimes makes it hard to catch my breath and sometimes just physically hurts. My right arm hurts from shoulder to fingers with fingers going numb.
Have not found any evidence of pinch nerves, sciatica or anything of that sort.
The new neurologist said clinically she would diagnose me but needs something concrete and had me so a lumbar puncture. I meet with her next week. The hospital I had my puncture at posted my results so of course while I anxiously wait to see my dr I'm nervous. It looks as though everything was normal besides my myelin protein which was elevated to twice the highest normal value this lab considered normal.
I have done quite a bit of research and know as much as I can about MS as a non dr can. My grandma had MS and had almost exactly to a T what I'm experiencing including similar test results. It took her 6 years to get a diagnosis.
My question here is has anyone gotten a diagnosis with just MBP and clinical observation? I know the MBP is not a test usually used for diagnosis but I'm feeling desperate for some help.

Any advice or experience here is welcome! Thank you so much!
Kira
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Re: While I wait....

Postby seanlanefuller » Mon Feb 06, 2017 12:44 pm

Sorry I can't answer your question about diagnosis. I can only share in your misery because I too am waiting on a diagnosis. I had an MRI, EEG, lots of blood work, neurological workup... Like you I feel like my brain is as full as a non-doc can get on this stuff. Especially with the brain cloud of pain, etc. I have stared at my own test results until I think I'm getting a little bit crazy about it. I'm sick of looking at my MRI and wondering about all of its imperfections. Good luck to you and know that there are others out there suffering and waiting with you. Last night was very tough.
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Re: While I wait....

Postby jimmylegs » Mon Feb 06, 2017 1:37 pm

hi kira have any docs referred you to a dietitian, to assess whether your essential nutrient needs are being met? nutrient deficit syndromes share signs and symptoms in common with chronic illnesses. one reason why vit b12 is on the differential dx list for ms. do you have your serum b12 result on file? if so can you share? (including units?) they may also have looked at serum 25(OH)d3, since that has crept onto the radar over the last decade.
there are a few others to think about which are often low normal in ms patients.
fyi there are close to 80 things the docs should be working to exclude before dialing in an msdx.
my personal focus is in the other direction, working to match health. :)
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: While I wait....

Postby Kash0419 » Mon Feb 06, 2017 2:16 pm

Thank you both for responding.

Jimmylegs yes the dr has checked my b12, d, checked for Lyme, and probably 1000 other tests. Before I met with any neurologists my primary ran a ton of things. Also checked for other rheumatoid factors as well. This new neuorologist even re ran some of them since I had that original blood work done Through Kaiser in august 2016. I am not vitamin deficient in any of the tests ran.
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Re: While I wait....

Postby jimmylegs » Mon Feb 06, 2017 2:36 pm

hi great that they've run those 'usual suspect' nutrient tests.
digging a little deeper, do you have your results on file?
this is in the interests of targeting health as distinct from 'not deficient' according to the local labs' setpoints,
was your serum b12 level above 500 pg/ml?
was your serum 25(OH)vitD3 above 40 ng/mL
that query is about whether your status puts you in the higher normal ranges associated with health vs lower normal ranges associated with disease states.
did they test any other nutrients which are often lower normal in ms patients, such as serum magnesium and serum zinc? serum uric acid is also often low normal in ms patients; is that one of the tests which has been run for you?
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: While I wait....

Postby Kash0419 » Mon Feb 06, 2017 2:46 pm

The did not run mag, zinc or uric acid as far as I can see and tell.
My vitamin b12 is 644 and my d3 is 52. I have supplemented d3 since I had my daughter 5 years ago and had a very mild deficiency while I was pregnant. It just became one of the vitamins I take now.
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Re: While I wait....

Postby jimmylegs » Mon Feb 06, 2017 2:57 pm

ok that is excellent info.
how much d3 per day? did anyone tell you to also take cofactors? anything else in the daily regimen?
pregnancy red flags zinc, to my brain - building humans is a big zinc drain. user cristin came on here with symptoms a few years back, she had been taking her am/pms once a day only, it still had low zinc content after she fixed her regimen. she added extra zinc, symptoms cleared up. doc said she didn't need the extra zinc, symptoms came back. she went back on the extra zinc and the last we heard from her was a 'thank you' :) a good news story :D
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: While I wait....

Postby Kash0419 » Mon Feb 06, 2017 3:20 pm

I never had an issue with zinc. Pre or post natal. The vitamin d was the only thing that ever came back slightly low. And even then it wasn't crazy low just lower than they wanted while I was pregnant.
This April has been 3 years of trying to figure this all out and have a dr really listen to me and get the right tests going. I have tried a ton of at home remedies and stretches and vitamins just to try to do my own ruling out when drs chose to say "wait and see" it's only getting worse.
Not that I want a diagnosis of MS because let's be real who WANTS that. I just hope this dr can help me figure it out
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Re: While I wait....

Postby Kash0419 » Mon Feb 06, 2017 3:22 pm

I will however mention all of this when I see her next Tuesday. Hopefully I can get some kind of answers to report back with :)
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Re: While I wait....

Postby jimmylegs » Mon Feb 06, 2017 3:37 pm

ok if you have a regimen in place, it could be very wise to look for possible imbalances. especially if you are not under supervision for the things you've been trying on your own. i have messed myself up a couple of times over the years, supplementing without enough information and driving things out of balance.

serum zinc can be in really bad shape but still show up 'normal' if that is how the lab is set up. i've seen it time and time again. just out of labs i've been to personally, i've seen the low end at 11.5 umol/L and 8.6 umol/L. via reports online, another lab was using 10 umol/L. meanwhile healthy controls are more like 18 umol/L and change.

all that said, i don't think i ever saw a test result from cristin. she just shared details of her routine and the glitches were obvious.

if you can get a referral to a dietitian, that will get you into the company of a nutrition specialist which, i am afraid, the vast majority of regular docs are not.
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: While I wait....

Postby Kash0419 » Mon Feb 06, 2017 3:55 pm

I work in oncology and we have one on hand here. I will speak with her however based on all the symptoms and different doctors I've seen over the years and my diet in itself, I don't think my nutrition is a concern. I will see what she thinks.
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Re: While I wait....

Postby jimmylegs » Mon Feb 06, 2017 4:49 pm

i must say, nutrition was a glaring issue for me. one example, i screwed up my magnesium status by taking 4000IU of d3 per day for several years. it might be worth giving your day-to-day a once over to see if your daily requirements are being met. for most, they are not.

recent canadian study, 99% on average not meeting all requirements for daily intake.

recent us study of female health professionals, many not meeting magnesium intake requirements. median intake of lowest quintile, 256 mg/d.

on that note, recommendations in the lit indicate daily intake of mag should be 7-10 mg / kg body weight daily. right there, if you follow the mainstream general recommendations of around 300mg for adult women, that means you can only weigh 95 lbs to achieve 7 mg/kg/day. the ladies in the study above would have to weigh 80 lbs to be getting 7mg/kg out of a 256mg daily intake. if following recommendations of around 400mg for adult men, if going for 10 mg/kg/day such a man can only weigh 88 lbs.

related reading (not studies, but those are all out there for the google-scholaring :) ) http://www.mgwater.com/rod20.shtml

link to post re fave recent study having a go at 'normal' range for serum mag (some books and studies say serum mag is a worthless test; not so - but an iffy reference range is certainly in use)
natural-approach-f27/topic28651.html#p245666

and, excerpt from the health pro ladies study mentioned above
natural-approach-f27/topic18568-150.html#p245551
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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Posts: 10653
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