Just diagnosed online, alone at home :(

[thisiswater]

My health care group has an online service called Patient Gateway, used for making appointments, requesting Rx refills and reading test results. I had my LP on Thursday have logged on once per day to see how the results are shaping up. I just read today's results of my LP on this patient access site. I may be reading this before my neurologist! Anyway here is the wording. I showed 8 bands, <4 is normal; any insights about this most welcome:

Interpretation (Oligoclonal banding) <4 bands 8
(NOTE)
The oligoclonal band assay detected 4 or more IgG bands in
the CSF, which are not detected in the serum. This is a
Positive result.
CSF is used in the diagnosis of MS by identifying increased
intrathecal IgG synthesis qualitatively (Oligoclonal Bands)
or quantitatively (IgG index or IgG synthesis rate, CSF).
Oligoclonal bands (4 or more CSF-specific bands) and/or an
elevated CSF IgG index are detected in up to 90% of
patients with MS. These findings, however, are not specific
for MS as CSF-specific IgG synthesis may also be found in
patients with other neurologic diseases including
infectious, inflammatory, cerebrovascular, and
paraneoplastic disorders.
Performed by MAYO CLINIC DPT OF LAB MED AND PATHOLOGY, 200 First St.
SW, Rochester, MN 55905

[lyndacarol]

My health care group has an online service called Patient Gateway, used for making appointments, requesting Rx refills and reading test results. I had my LP on Thursday have logged on once per day to see how the results are shaping up. I just read today's results of my LP on this patient access site. I may be reading this before my neurologist! Anyway here is the wording. I showed 8 bands, <4 is normal; any insights this most welcome:

Interpretation (Oligoclonal banding) <4 bands 8
(NOTE)
The oligoclonal band assay detected 4 or more IgG bands in
the CSF, which are not detected in the serum. This is a
Positive result.
CSF is used in the diagnosis of MS by identifying increased
intrathecal IgG synthesis qualitatively (Oligoclonal Bands)
or quantitatively (IgG index or IgG synthesis rate, CSF).
Oligoclonal bands (4 or more CSF-specific bands) and/or an
elevated CSF IgG index are detected in up to 90% of
patients with MS. These findings, however, are not specific
for MS as CSF-specific IgG synthesis may also be found in
patients with other neurologic diseases including
infectious, inflammatory, cerebrovascular, and
paraneoplastic disorders.
Performed by MAYO CLINIC DPT OF LAB MED AND PATHOLOGY, 200 First St.
SW, Rochester, MN 55905

In my opinion (I have no medical background), oligoclonal bands in the CSF are NOT conclusive for a diagnosis of MS.

Oligo bands are often found with vitamin B12 deficiency, just to name one other condition.

[kw202]

It's true, the O-bands themselves aren't diagnostic of MS. But they are characteristic of MS, one of the handful of things that represent fairly strong evidence. Put together with your other test results, you may be headed toward an MS diagnosis. But that's really for your doctors to interpret.

Either way, you're still the same person yesterday as today.

My LP also showed I believe 5 bands. As I've said before, it was the last piece of the puzzle leading to my diagnosis.

How was your LP? I've been hoping for you that it went smoothly.

[thisiswater]

lyndacarol: My neurologist has diagnosed MS based on other evidence along with the presence of O-bands. I had optic neuritis 7 years ago, lots of parathesias since which were attributed to herniated discs, and a recent cluster of symptoms that he believes was a flare. I've had an MRI and, compared to the one I had 7 years ago, it has **many** more ("innumerable") lesions. It seems pretty solid to me, but I am in the pipeline for a second opinion, especially re: treatment options.

kw202: thanks for your good wishes! The LP was not bad, even though I had a rookie doing it. I was numbed up and under fluoroscope so it was OK. My neurologist has dx'd MS and I have complete trust in him.
It's a sad day for me, I'm very upset by the "what if's" and just not knowing how this will play out (kind of like life without MS, you know? .

[kw202]

lyndacarol:kw202: thanks for your good wishes! The LP was not bad, even though I had a rookie doing it. I was numbed up and under fluoroscope so it was OK. My neurologist has dx'd MS and I have complete trust in him.
It's a sad day for me, I'm very upset by the "what if's" and just not knowing how this will play out (kind of like life without MS, you know? .

I'm really glad that your experience wasn't that bad, and am happy that you went through with it, if for no other reason than peace of mind. It's really a load off when you can have an ACTUAL ANSWER, even if that answer isn't what anybody would want it to be. I know it was for me, because then I was finally able to confidently chart a course and take control of what was happening to me. I selected my supplements. I changed my diet. I decided on a medicine and began it. And off I went. I believe in the power of positive thought paired with positive action, and I hope you do too.

You will move forward from here. You will continue living your life, and put the "what ifs" behind you, at least day-to-day. My mom once told me, when I was going through a really difficult break up -- that I should turn the "what-if" into a "whatever," and go on living my life. It's pretty applicable to this, too. Today, I am all right -- and today, you are all right -- and that's about all anybody in this life can ask for, isn't it? If I had never been diagnosed with MS, I could still get hit by a truck tomorrow, and be just as incapacitated or worse.

Take your time to grieve and worry. We have to feel what we have to feel. Then pick yourself up, dust yourself off, and go back to living. Drink from the cup of life.

[thisiswater]

kw202 - Thanks for your words of wisdom. Which diet did you choose? What are you supplements and dosages? And what medicine did you choose? I'm trying to get as much information about these topics as possible before I meet with my neuro on Tuesday to discuss next steps/treatment plan. Many thanks!

[chezy]

Hi. I'm pretty new to these forums and I'm sort of in limbo too! Had my MRI results back and I have 2-3 lesions on my spine and some lesions on my brain but the neurologist couldn't see them. The report says I have them on both sides of my brain. I'm being referred to the MS clinic as it's them that need to give me a diagnosis. I think he was breaking it to me in the nicest possible way as I think he is 99.o% sure it is. I don't think mine is relating to a deficiency, guess I'll wait to see what the clinic says. Just let it try and stop me from doing the things I want to in life because it won't.

[ElliotB]

"but the neurologist couldn't see them"

This is not unusual. I had the same situation with my 1st neurologist. He assured me I did not have MS even though he knew MS was in my family history. The 2nd one I saw, a MS specialist, was able to easily and correctly read my MRI.

[chezy]

So this is quite common then for then not to see it? I'm being positive about it all though,life's too short to if, but and maybe. They've caught it early if this sounds the case where's I know some people battle for years before they say well actually it is MS. My doctors pretty much ruled stuff out before I was sent to the neurologist so I'm guessing that's what they were suspecting. Do you always have a lp or can they diagnose on the MRI scan? Thanks for reading this .

[ElliotB]

It is not unusual for a neurologist who does not specialize in MS.

[chezy]

He did say that to me, he said it looks like and sounds like it based on the symptoms, scan results and assessment of me which is why he is referring me to a specialist. He said that they may diagnose on what they have or I will have a lumber puncture. He's not sure if I've had 1 or 2 attacks as I had my right side for all numb, burning and tingly to the point I burnt myself and then I've had my left side go but has affected me from my neck to my toes.

[kw202]

kw202 - Thanks for your words of wisdom. Which diet did you choose? What are you supplements and dosages? And what medicine did you choose? I'm trying to get as much information about these topics as possible before I meet with my neuro on Tuesday to discuss next steps/treatment plan. Many thanks!

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
Curcumin

On diet. 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.

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).

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. It builds on Swank.

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.

On medicines, I was offered a choice of tysabri, gilenya and tecfidera. I ended up choosing tysabri. In fact today was my second infusion.

Let us know what you decide,
kw

[thisiswater]

Thank you for the informative post, kw202. I'm actually following the Wahls protocol and will begin taking Copaxone in about a month (doc has to push it through insurance, which his insurance person states will be easy). He gave me a choice of starting the meds or going w/ the diet and other lifestyle changes and having another MRI before starting drugs and I may do just that, especially since I am largely asymptotic. I think what all these diets have in common is a focus on bringing inflammation down, which makes sense to me.

Dairy is hard for me to give up, I love quiche, soufflés, cheese & crackers, sour cream! I'm still not sure why dairy is so bad; is it considered inflammatory?

Your supplements look a lot like mine, Right now they are:

D3
B12
Curcumin
CoQ10
multi vitamin
fish oil
Calcium/Magnesium
Probiotic

Stay in touch with your observations!

[kw202]

Dairy is hard for me to give up, I love quiche, soufflés, cheese & crackers, sour cream! I'm still not sure why dairy is so bad; is it considered inflammatory?

Believe me I know - cheese has been much harder for me to give up than even meat, to be frank. I won't try to replicate Jelinek's research about why dairy is bad, but it has to do with the milk proteins in it, and how they act in the body - also, dairy is LOADED with saturated fat, which is to be cut down to absolute minimum levels to avoid relapses. And, yes, it is inflammatory, sadly. If you don't give it up, at least cut it down a lot - and when you do have dairy, try to counter it with antinflammatory foods.

I try to also eat anti-inflammatory in complement, and the information in Inflammation Factor is helpful. It basically assigns foods an inflammation value, with the point to try to end the day at a level where you have eaten more anti-inflammatory foods than inflammatory foods, with the ideal point set depending on whether you have a disorder that you're trying to account for or not (like MS). I think the target for MS is +150 IF. (www.inflammationfactor.com)

[thisiswater]

kw202: I haven't checked in to this thread for a while. Thanks for your insights. I'm starting on Copaxone soon and am cleaning up my diet in stages. Refined carbs and sugars are first to go!