Newly diagnosed

[Dani]

Hi everyone,

my name is Dani and I am 37 years old. I have been having strange symptoms for around 10 years but more sever for last 2 1/2 years. I was diagnosed with MS last week. I am still a little numb from the news. I have two young girls and a loving husband that I want to take care of and haven't been able to as I would like.

I am glad to have found this forum. I had a severe headache after my spinal tap and had to have a blood patch which cleared up the headache but they hit a nerve and it left me in severe pain for a week, flat on my back. I had a few good days then went back for my results.

My neuro doc says that I have multiple lesions on my MRI and he said my oligoclonal band count was 9, anything higher than 2 is suggestive of MS and he had never seen more than a 7. That was very scary to me. Is this typical?

Should I try to find an MS specialist or is my local neurologist sufficient? I am so confused and have no idea about what type of treatment to go with andI have held off starting anything in lieu of needing to research a little.

Can anyone help me out? I have so many questions and have a ton of trouble expressing myself. I have a hard time processing information right now too.

Anyhoo, glad I found this support site and sorry you all havethis disease too.

[namedbos]

Dani:
Sorry to hear about you. I am in a similar situation but have not got a spinal tap done as neuro is pretty sure that I have MS. My Neuro. said that the bands in Spinal tap are not always indicative of MS but in my case they are pretty sure from the MRI and my exam that thats what i have. I am not too convinced myself yet. I was diagnosed 3 years back and did not go on medication. I changed my diet and lifestyle a bit and that it helping somewhat. I also recently found that I may have a problem with my spine that may be causing a issue with my symtoms. Everyone is diffrent so you will need to figure out what is your situation. I wish you the best and I hope there is a cure that could help us all.

I have a little girl myself so i somewhat know how you feel. Its surreal and hard but we have to live through this and hope for the best.

[Muu]

Dear Dani
I'm sure you must be reeling from all that has happened in the last few weeks. I had my first investigations when my first child was only a few months old. I felt v vulnerable then as you must do now. Give yourself time to deal with things. Some days will be good and some will be bad. I'm happy you found this site. There is a lot of knowledge and experience here. It can help you decide what to do and support you in your decision.
All the best.
muu

[Loriyas]

Dani
I know the first few weeks can be overwhelming to say the least. Especially since you are still recuperating from your procedure. This is not something that you have to make decisions on immediately. You have time to do some research and thinking to determine what you think is the best course for you. You can also decide to try one medicine or direction and then change your mind and try something else in the future if you find that something else may be a better fit for you. So take a deep breath, take a little time to collect yourself and then you will be able to make better decisions. This site is full of great information and lots of different viewpoints that I'm sure you'll find useful. I have. Ask many questions and you'll begin to get a handle on this. Good luck.

Lori

[Loobie]

Hi Dani,

I agree with Loriyas on the not making big decisions immediately. It sounds like you have a good foundation with your family. Having a loving spouse makes this so much easier as you don't have to focus on wondering what your spouse is going to do in response to this kind of news.

Just keep researching and make sure that you are your own advocate. Even the best neuro. can't climb inside your skin. I say that so that you don't just carte blanche take the medicine he may recommend if your research was steering you towards trying something different. After your initial diagnosis it is a major blow to your mojo (self confidence) that you will eventually learn how to deal with.

My dx came down at the age of 35 right when the career and everything else was really hitting it's stride. It's a real kick in the crotch, but the way you describe your family, it sounds like you may be able to lean on them until you really get to know the new you. Don't let the spinal tap thing fool you. There has yet to be any diagnostic criteria that can definitively let you know how severe you will be. My first MRI had 0 lesions and I had numerous symptoms. My aunt who has this is doing good for having MS for twenty years and she says she has a massive amount of lesions. It is all where the things are located.

Hang in there and best of luck. Use this forum often as there is always good advice, good nurturing and also, no one in here will let you have too long of a self pity party.

Welcome.

[gibbledygook]

Hi Dani,

It's truly horrible to get this diagnosis. My sympathies with you at this time. I personally wouldn't hesitate in recommending the antibiotic protocol which you can find on this website under the Antibiotics forum. I think they may be invaluable in halting certain forms of MS. They've certainly SEEMED to halt the progression of new deficits in me although I have only recovered from one deficit in nearly 2 years on antibiotics. I regret not taking these relatively harmless and not too expensive pills sooner. Check out other forums too - LDN is a popular pill with some.

[mick_b]

Hi Dani:

I was dx’d at age 49 and had three bands in my spinal fluid. I got two spinal taps . The first one was fine and the second one was bad. I had a terrible headache for two weeks and was flat on my back like you were. If they schedule you for another spinal tap check out this link. It tells them how to insert the needle so it won’t leak (no headaches)

http://www.geocities.com/HotSprings/Villa/5422/

I’m sure you have a lot of questions but I agree with the others, take some time to let it sink in and spend some time researching it.

As to your question about an MS specialist or regular neuro. I have seen 5 neuros in 6 years, Three were specialists. The worst one and the best one were both specialists. I am glad I got the extra opinions. I am currently with a group that only does MS. It helps me because I can ask a lot of questions and they can usually provide answers. I think you want to find a neuro that you can work well with and one that respects your opinion as well. I think the specialist part is probably secondary.

What ever you decide don’t ever be afraid to ask questions. You almost have to become your own specialist so you know what decisions suit your own situation.

This site has a lot of great folks, don’t hesitate to post if you need to get different perspectives. We’re all in the same boat.

It sounds like you have support from your family which is really important.

Hang in there, stay rested, get informed and start making inquires.

The answers will come.

Mick