Help! Recently diagnosed. Now what?

[Sheena326]

Hello all, I got the dreaded phone call yesterday that my lumbar puncture came back positive for MS. It took me by surprise because at my last neuro appt. the doctors said they did not suspect MS. I feel like I am completely overwhelmed and obviously in a bit of denial. I go back for an appt on Friday with a MS specialist. I am a mom, 34 years old and a 4th grade teacher. I know everyone is different but any advice would be greatly appreciated. I have started a list of questions to ask my doctor, but I would love some input.


Thanks

[lyndacarol]

I got the dreaded phone call yesterday that my lumbar puncture came back positive for MS. It took me by surprise because at my last neuro appt. the doctors said they did not suspect MS. I feel like I am completely overwhelmed and obviously in a bit of denial. I go back for an appt on Friday with a MS specialist. I am a mom, 34 years old and a 4th grade teacher. I know everyone is different but any advice would be greatly appreciated. I have started a list of questions to ask my doctor, but I would love some input.

Welcome to ThisIsMS, Sheena326.

If the vitamin D blood test called "25-hydroxy D" has not already been done in the course of diagnosing you for MS, please ask your GP or the MS specialist you see on Friday to order one for you. Also, request your own copy of the test results so that you have the actual number.

The California-based group, GrassrootsHealth (http://www.GrassrootsHealth.net), recommends that the blood level of vitamin D should be at least 40-60 ng/mL. Many neurologists recommend the level should be 70-100 ng/mL for their patients with neurological symptoms.

The standard range, used in most labs, is 30-100 ng/mL, which was established by the Institute of Medicine.

After a vitamin D test, you and your doctor will, of course, discuss your vitamin D status.

[tzootsi]

Sorry to hear about your dx, but it's not the end of the world. First off, find out what kind of MS you have. RRMS is the most common, but SPMS and PPMS are also possible, depending on your symptoms. A no brainer is to immediately start taking vitamin D3 in fairly large doses (5000-10000 a day). Lots of new research is finding that vitamin D can improve outcomes in MS. If you are RRMS, you have a few choices - you can go mainstream and take one of the MS DMD meds which can be helpful. If you have SPMS or PPMS, there aren't any mainstream meds yet, other than biotin which can help. You may also want to investigate new and non mainstream treatments that are found on this site. Perhaps the most promising at this point is Dr Coimbra's mega vitamin D protocol. Good luck and do lots of research.

[jimmylegs]

it is purely irresponsible to recommend high serum levels or high dose vit d3 with no attention to other nutrients.
vive la difference :S lol

here is a selection of posts which will flesh out my position a bit:

big picture, kind of (i probably need to update this post as it's the oldest. the rest listed below are all recent posts)
http://www.thisisms.com/forum/chronic-c ... 17004.html

health care gaps
http://www.thisisms.com/forum/undiagnos ... ml#p246494

dangers of d3
http://www.thisisms.com/forum/general-d ... ml#p246538

step one for self assessment
http://www.thisisms.com/forum/post246598.html#p246598

what one of the subsequent steps can look like
http://www.thisisms.com/forum/undiagnos ... ml#p246503

[tzootsi]

Recommending 5000-10,000 of D3 is certainly not irresponsible. Yes, it's great to try and have a healthy intake of zinc, B vitamins, and particularly magnesium with MS, taking 10,000 units of D a day is in no way dangerous. My wife is being treated by Dr Michael Holick, one of the world's most respected authorities on vitamin D - she's currently on 35,000 of D a day. Dr Holick mentioned that magnesuim would be a good thing to take, but never said there was any 'danger' in large doses of D (>10,000) other than cutting back on calcium and drinking lots of fluids. As per Holick, Dr Coimbra, and scores of other doctors who are having success treating MS with vitamin D, 10,000 a day is perfectly safe without any other regimens or dietary modifications. Once you get above 10,000 you do need to be monitored by a doctor due to calcium issues.

[jimmylegs]

there are still gaps in the science where long term assessment of d3 is concerned. i look forward to the day these voids have been addressed.

in the meantime, readers can acquire their information in a pro-d3 echo chamber eg the coimbra topic or similar (author cg coimbra: one study published in an academic journal, nothing to do with vit d3, and challenged by his peers due to an array of methodological problems).

other perspectives may be obtained elsewhere on this site and others, eg via

Post subject: Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS
http://www.thisisms.com/forum/chronic-c ... ml#p223430

and in natural approach

topic: all things vitamin D
http://www.thisisms.com/forum/natural-a ... 9-960.html

Post subject: Any supplements we should NOT take?
http://www.thisisms.com/forum/natural-a ... 25325.html

topic: 10 years of internet re d3 without magnesium
http://www.thisisms.com/forum/natural-a ... 28801.html

after my own xp i am forever grateful to the pharmacist who pinpointed my 4000 IU per day d3 overdose, and provided the info i needed to correct the problem.

back to you sheena