Brand new, overwhelmed, lots of questions, happy to be here!

[thisiswater]

Hi everyone!

I'm in my 50s (that can't be true!) and live in a charming New England coastal town with easy access to Boston. I feel very lucky to have access to some of the world's best hospitals. Here's a bit out me and my history:

I had optic neuritis in 2009. It resolved and, while I had an MRI that showed a couple of v. small lesions, the neuro said they were more typical of migraine and that was that. My vision was restored. I just put it out of my mind.

In 2010 I had weight loss surgery (vertical sleeve gastrectomy, not a bypass) and had felt terrific for about 3 years. Lost the weight, ate well, no joint pain.

Then, a couple of years ago I had a bad bout of vertigo, but it went away with meds and I didn't think anything of it. Within the past 6 months I had about a month where every morning I woke up with some kind of numbness or another, often just pain in one arm, etc. My pcp didn't make much of this (!). I also had strange sensation in my feet, as though there were cotton balls stuck under my toes.

During this time I was diagnosed with 2 herniated discs and have cortisone injections at the site once or twice a year with good result.

This past December I was lifting a VERY heavy leather chair and had the worst headache I can imagine. I thought I was going to die, went to the hospital and had MRIs to rule out aneurysm/masses. Also had CT scans and bloodworm. WELL, then my pcp noticed new lesions and sent me to a neuro, which is where I am today. I was able to get the 2009 MRI to him and he noticed more lesions in the current MRI. Called me today to said he's thinking MS and wants me to have a lumbar puncture, but wants to see me first on Monday. Which I think is great.

(I should at that since 2009 I've had way more life stressors than anyone should endure: a college daughter with learning disabilities and the emotional baggage to match, placement of both my dear parents in assisted living, the death of my father, my mother's dementia, the loss of a job I loved with all my heart, moves, a dear friend with leukemia and another with Parkinson's. Just a show.)

I have lots of questions and don't want to overwhelm, so here goes:

- Is a lumbar puncture still *really* necessary I know lots of people refuse to have them.
- I've been reading and watching YouTube re: **diet and supplements and am curious as to where you all think I should start**
with that. If you could triage re: supplements, that would be just great.
- Should I ask my neuro to do a nutrient work up before the spinal tap? I know Vit D and B vitamins are huge issues.
- Finally, I have seen Terry Wahl's "Ted" talk and while I'm impressed, I realize she's but one anecdote. I DO want to change my
but I am an excellent cook and must have things that are delicious. To that end, I have ordered: The Zenbelly Cookbook: An Epicurean's Guide to Paleo Cuisine.

The other books just seem so ascetic

OK, enough for now. I welcome your responses.

[SNOOPY]

Hello thisiswater and welcome to MSWorld.

Usually a Neurologist will do a full blood work up, typically 10 to 12 vials of blood. There are many other conditions that can cause the same type of symptoms as MS and many of those can be ruled in/out with blood work.

There is no single test, by it's self, that can give a definite diagnosis of MS. All tests are part of the total clinical presentation. Approximately 90 to 95% of those who have the Lumbar Puncture(LP), and MS, will show o-bands. There are those who do not have the LP and still receive a diagnosis of MS and 5 to 10 percent of those with MS never show o-bands.

Whether you have the LP or not is up to you, you do have the right to refuse. However, the more information you and your Physician can get through testing the better. Maybe it's MS and maybe it's not. The LP is used in the diagnostic criteria for many things.

Best wishes.

[Mackie]

Hi there,

I think you should write your questions down and bring them up on your appointment Monday. I think it's important to have your concerns structured on a list when you go see any of the doctors you're likely to see in the next little while because I've found during these appointments things can be a little hectic and it's easy to overlook something like wanting to get your vit D checked.

Lumber punctures do provide information for neurologists and are still relevant. MS patients are kinda like snowflakes, we are often unique from each other in our individual experiences but look similar from as a whole. The more information your physicians can obtain about what's going on with you, the better equipped they will be to help with some of the issues. Ideally.

I understand not wanting to have the lumbar puncture. It wasn't as bad getting it done as what I thought it would be. It wasn't like super happy fun time or anything but it wasn't excruciating. I would describe it as uncomfortable. The results and information it provided were worth it.

Bring up your concerns on Monday with your physician, you're your greatest advocate.

Good luck!

[kw202]

Hi Thisiswater. Welcome to you with all my heart, you will find a lot of really wonderful people here with knowledge to share. It sounds like you've had a tremendous bout of stress recently and I admire you for getting through it all.

First let me say - MS is a diagnosis of exclusion. There is no one test that can diagnose MS. That means you need a rather extensive workup to exclude all kinds of other things that can mimic MS, before MS can be ruled-in. It is absolutely vital that all of this gets done.

The most critical things to test for, as a start, are vitamin deficiencies. B12 deficiencies in particular can mimic MS, including causing lesions. Many MS patients are also severely deficient in vitamin D. It is not a MS mimic, but if you are exhibiting neurological symptoms, it's critical that you elevate your levels of vitamin D in order to help protect your system.

You should start with these blood tests:
Vitamin B12 and folate levels; Vitamin D levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance
Antibodies to nerve components (anti-MAG)
Antibodies related to celiac
Lyme disease
AIDS/HIV
Hepatitis C and B

Have you had these done yet? What are your levels, especially with D and B12? If not, insist on them. And don't just let your doctors report the results to you as "normal" - some of these tests, especially for vitamin levels, the RDAs are woefully low - especially for those of us exhibiting neurological symptoms. Get copies of your tests. Read and track the levels for yourself.

To your questions:

- Is a lumbar puncture still *really* necessary I know lots of people refuse to have them.

Since MS is a diagnosis of exclusion, it's a bit like a lawyer or detective building a case. Some evidence points to yes. Other evidence might point to no. A lumbar puncture itself can't diagnose MS. Similarly, an MRI in isolation can't diagnose MS. Together they can paint a picture that may lead to a diagnosis. Some people are able to be diagnosed without a lumbar puncture. For me, a lumbar puncture was the last puzzle piece that led to my MS diagnosis.

Everyone is different, but in retrospect, it wasn't as awful as I had feared.

The worst part was having to take a day off work (followed by a day of working from home). The spinal tap itself was not very painful, or even particularly uncomfortable - though it's fair to say I've had more fun days in my life. The worst, and this wasn't even all that bad, was the lidocaine shot. After that I didn't feel anything other than pressure and occasional nerve zaps in my butt. (A true pain in the butt!)

I talked for a good bit with the radiology nurse who said the key to avoiding a spinal headache is to make sure the doctor who performs the puncture uses a less-traumatic "sprotte" needle. She said their practice has reduced spinal headaches to something like 18% as long as the doctor is able to use that type of needle. In short, if your neurologist feels a spinal tap is necessary to resolve the question, I would not be afraid of it. For me, it was mostly annoying, and at times slightly amusing.

- I've been reading and watching YouTube re: **diet and supplements and am curious as to where you all think I should start with that. If you could triage re: supplements, that would be just great.

I have many suggestions here, and I would be happy to make recommendations. But first, before you start supplementing, you should get your nutrient levels tested to ensure you are seeing a true picture before you start supplementing.

That being said - the most crucial things for you to start supplementing, assuming your levels are deficient, are D and B12 (make sure you are taking D3, not D2 - it is more bioavailable). The levels you'll need will depend on your starting levels- but in general, you should aim for a B12 serum level of around 1000 pg/ml and a D level of around 80-90 ng/ml. If you are severely deficient - as I was - a "megadose" may be appropriate to get you up to protective levels ASAP.

You should also look into omega-3 supplementation (fish oil/flax oil). It really is crucial to your grey matter. This is my daily supplementation regime:

Multivitamin
30ml of omega-3/day (flax oil preferred) + 3x/week fresh oily fish
10k IU D3 (I am still working out an appropriate maintenance dose for me, your mileage may vary)
2000mcg B12 (again, depends on your starting serum levels)
100mcg K2 (because I am taking such high levels of D, this helps ensure calcium isn't leached into my bloodstream)
400-600mg of magnesium (because I am taking such high levels of D, which needs magnesium for absorption)
acetyl-l-carnitine 1000mg + r-lipoic acid 300mg (for nerve regeneration)
coq10 100mg
n-acetyl cysteine 1200mg
probiotic
....I think that's it.

- Should I ask my neuro to do a nutrient work up before the spinal tap? I know Vit D and B vitamins are huge issues.

Absolutely, or possibly with it. It doesn't matter the exact timing, as long as you get your blood tests done prior to beginning supplementation.

- Finally, I have seen Terry Wahl's "Ted" talk and while I'm impressed, I realize she's but one anecdote. I DO want to change my
but I am an excellent cook and must have things that are delicious. To that end, I have ordered: The Zenbelly Cookbook: An Epicurean's Guide to Paleo Cuisine.

Wahl is somewhat controversial. She had chemotherapy drugs that may have significantly contributed to her recovery through resetting her immune system (it strikes me as possibly similar to results from lemtrada).

There are 3-4 different diets that are recommended for MS. They all differ slightly, and like almost everything else with MS, it's a personal choice. I recommend you check all of them out - Wahl's, Swank, Best Bet, and Jelinek.

I have chosen to follow the Jelinek plan, which is basically - no heated oils, vegan+fish, very low saturated fat, omega-3 and vitamin D supplementation. I recommend his book, Overcoming MS. His research is solid.

But yes, it is quite a lifestyle change. I was already mostly following a vegetarian diet when I first started suspecting MS in November, so it was less of a drastic change for me, but I found his research to be the best (building on Swank's results).

All of the MS diets are a little different, but have in common healthy, mostly plant-forward whole foods, and NO DAIRY... I do miss cheese.

You are asking all the right questions, and clearly are already on the right track. Good luck. Please keep us posted, especially on your nutrient levels.

[Wonderdog lady]

Just want to add something about the lumbar puncture if your diagnosis requires it to confirm MS. When the doctor advices you go home and lie flat in bed after the procedure, take the advice seriously.

I was working at home the day of my procedure and instead of laying flat, I propped myself up with pillows and worked on my laptop. That was just enough to affect the pressure in my spinal cord. What followed was the absolutely worst headache in my life...the dreaded spinal headache. I had to return to the doctor for a blood patch. So I don't know anything about this special needle they use to control the frequency of spinal headaches. That may be new since my diagnosis. But, no matter how good you feel afterwards, go back to bed when you get home!

Just my two cents...oh and I agree the lumbar puncture isn't that bad. It's not that good either
.

[kw202]

Just want to add something about the lumbar puncture if your diagnosis requires it to confirm MS. When the doctor advices you go home and lie flat in bed after the procedure, take the advice seriously.

I agree here, too. I took pains to stay lying in bed for the rest of the day, and the day after too.

Here is an of some research on how much a "sprotte" needle can reduce spinal headaches, if you're curious: http://www.ncbi.nlm.nih.gov/pubmed/11756618

[Skidder]

Lumbar

I had a lumbar puncture and as others have stated, you want to stay absolutely still. I got out of bed long enough to let the dog out, but that was it. You have to let the puncture heal/close so the fluid doesn't seep out and cause the headaches. My sister has MS and wasn't told to take it easy and had headaches that make her migraines seem like child's play. On the other end of the spectrum, I didn't have any issues at all.

I have had pretty much every test. I personally would rather know as much as possible and not miss something that could be treated. I never thought I'd hope for a dx of syphilis, HIV, B12 deficiency, or hope I would be told back surgery would resolve any issues. Knowledge is empowering and not having a test or confirmed dx does not make the situation any better or worse, now or going forward.

When I had my LP, I was put in recovery for an hour. I had a driver to take me home. I went straight to bed and stayed there flat on my back. I think I let the dog out twice and worked from bed the following day.

View it as dreaming you're peeing. Don't fall for it! You may feel great, but stay put. Don't think for a second that you can get up and do things. You have to let the puncture heal.