Any Experience with Cleveland Clinic?

[Mommy5kids]

Hi everyone!

I posted here a month or so ago as my "do I have MS?" journey began.
First post: http://www.thisisms.com/forum/undiagnos ... 28525.html

As all of you know, there is a lot that goes on while trying to find out an answer. To condense it:

4 years ago, vertigo, dizziness, feeling like I might pass out, leg and foot cramping. At that time, did not make the connection but now I wonder.

This past year, the vertigo and dizziness revisited. Seems to be agitated in places where it is warm (office, basketball games, stores). Those are also places with flourescent lighting and/or lots of information to process at once. Haven't figured out which is the trigger. This time, numbness accompanies these episodes. They started out once in August and November and then with a vengeance in December, every couple of days. We're now in February and the numbness remains in my hands and feet. Sometimes in my arms and legs. (other assorted symptoms are neck stiffness, dull headaches, right sided twitching, my eyes flutter when I look down to focus on something close, frequent urination moreso at night, some bowel incontinence, I'll spare those details)

I have had an MRI w/ contrast of my brain and c-spine. 10 white spots in frontal lobe. I've also had CT angiograms of my head and neck, both negative. (Neuro wanted to rule out anything vascular).

Initial neuro exam was mostly normal except for a positive Romberg, slight issue with gait and left sided weakness.

Blood work is all unremarkable EXCEPT vitamin d which was 8. Severely low. I've been taking 50,000u weekly for the past five weeks. I've noticed no difference in symptoms yet.

Neuro also prescribed Verapamil, a calcium channel blocker, on the off chance that my symptoms were complex migraines. After four weeks of it, no difference, either.

Endured the spinal tap two weeks ago today. It wasn't as bad as I had prepared myself for. A week later, my results came back normal. I have not seen the numbers. When neuro called to give me the results, they asked about how the Verapamil was doing for me. I shared that I felt there was no difference. Nurse recommended doubling it. Let me say that Verapamil is a blood pressure medication and my blood pressure is normal. Doubling it would most likely render me useless as the 180mg they currently prescribed cause me to sleep A LOT!!!

All this to say, upon the urging of many friends and family, I called the Cleveland Clinic. I live in Central Pennsylvania and the general rule around here is if you want answers, you go out of town for medical care. A coworker of my husband had a negative lumbar puncture AND MRI's locally. She went to Johns Hopkins where they have more advanced equipment and they found several lesions on her c-spine that were missed locally.

Anyone here have any experience with Cleveland Clinic? Or with going to an MS Specialist and receiving a diagnosis there? Any advice or thoughts appreciated.

[jimmylegs]

RDAs and normal ranges for vit D3 cofactors are in need of revision.

when i took vit d3 with insufficient attention to cofactors, i ended up with very scary and unpleasant side effects.

starting with one we've already discussed, how's your progress been with magnesium? you had mentioned that your husband already takes it. does he use magnesium glycinate?

have you figured out at this point if your mag intake from diet and any supplementation achieve 7 - 10 mg/kg body weight per day?

nb re RDA issues. if you adhere to rda for mag (which is a minimum number) that means in the neighbourhood of 310 to 360 mg per day depending on age. so for the sake of example say you're in the highest intake group, if you're going for the top end of the 7-10 mg/kg range, that means you can only weigh up to 36 kg or 80 lbs.

i wouldn't expect 50K of D3 weekly to make a difference that you would feel. for me, the vit d3 cofactors that have made the biggest difference for me day to day have been magnesium and zinc. (other things have made a big difference too, but don't have the close connections with zinc).

sry. no xp with cleveland clinic. someone here likely has though

[ElliotB]

Excellent in every way!

[lyndacarol]

Blood work is all unremarkable EXCEPT vitamin d which was 8. Severely low. I've been taking 50,000u weekly for the past five weeks. I've noticed no difference in symptoms yet.

...
Anyone here have any experience with Cleveland Clinic? Or with going to an MS Specialist and receiving a diagnosis there? Any advice or thoughts appreciated.

I have no experience with Cleveland Clinic, but have heard many positive comments about it.

I suggest you have a close look at the Coimbra High-Dose Vitamin D Protocol subforum here at ThisIsMS (http://www.thisisms.com/forum/coimbra-h ... tocol-f57/).

Vitamin D is needed by every cell and system in the body. Your severe deficiency does not cause symptoms, but enables your weakest system to manifest your symptoms.


What's a vitamin D deficiency? (44 min.) Feb 2009
Overview, Actions by Robert P. Heaney, M.D.:


The preventive maintenance model (of a nutritional physiologist) has the foundational premises:
@11:41 all tissues need all nutrients
@12:04 shortages impair the functioning of all body systems
@12:21 premature organ/system" wearing out", as a consequence of nutrient deficiency, will vary from person to person, depending on variables genetic composition
@12:31 therefore, suppression of nutrient deficiency will usually be pluriform – both between and within individuals

Estimates of deficiency problems: 65-95% (@38:12)