Hello all

[painterhatcher]

Hi everyone, I'm new here and want to start by saying this seems like a good forum. I don't visit forums much, but I have no friends or family to speak of, so I thought it'd be worthwhile to start communicating with people, even if it is digital, about this nasty thing called MS. I started feeling weird in 2010 while going to university and checked into the hospital. They did ct's, mri's, labs and lumbar puncture, and after 3 days came into the room and said, you have multiple sclerosis. Hooray! They then referred me to an ms specialist who did more tests and labs, and after a month or so, told me she thought it was ADEM, or a rare thing called Anti-NMDA receptor encephalitis. More tests to confirm the nmda thing, and said that was the culprit and that I had a less than 1% chance of having MS. Amway, I didn't really think I had that because I wasn't psychotic, which was a symptom of it. Long story short, I moved back to San Diego and had a second opinion in 2012 at UCSD and they gave me the diagnosis of MS, but no idea of what brand of MS it was. I've always thought it was PPMS because it all started very slowly, mostly with numb feet and walking/balance problems. Those have all been consistent for 4 years now, without any kind of exacerbation's. But this week I've had the worse muscle and joint pains of my life, where I could barely walk and had to start taking hyrocodone. I saw a new neurologist where I live now before these pains and he said he thought I have RRMS, which I didnt think I did because no flares. Until now, I think. So, is it possible to have consistent symptoms for 4 years, then have your body freak out with muscle, joint, and nerve pain? Or could these pains be due to my older age(44), standing out in 30 degree weather for 4 hours a day and walking 2 miles to and from work 5 days a week? I guess I'm really asking how do you know when it's a flare, or just standard body rot from just plain ol' being alive? Thanks for listening and sorry for the long intro.

[Scott1]

Hi,

When they diagnosed the NMDA antibodies, did they do anything?

Normally its infusions of IGg. Did they give you that?

Regards

[painterhatcher]

No, they (she, my neurologist, at The Mind Research Network in Albuquerque) basically just said that no one in New Mexico new anything about the disease or how to treat it because apparently it was only recently discovered in 2007. There was no "here's what you should do", or here's some information on it", or anything. Just basically, good luck and don't let the door hit you in the ass. So I sold all my stuff and left NM to find someone that did know.

[lyndacarol]

No, they (she, my neurologist, at The Mind Research Network in Albuquerque) basically just said that no one in New Mexico new anything about the disease or how to treat it because apparently it was only recently discovered in 2007. There was no "here's what you should do", or here's some information on it", or anything. Just basically, good luck and don't let the door hit you in the ass. So I sold all my stuff and left NM to find someone that did know.

Welcome to ThisIsMS, painterhatcher.

Your GP or neurologist should have screened for nutrient deficiencies as these are common and cause neurological symptoms. I hope you were thoroughly screened for a possible vitamin B12 deficiency… Next, I hope your serum vitamin D3 has been checked, especially in view of the following video:

Piu di 6 anni di trattamento contro la sclerosi multipla con la vitamina D
Testimonial of Ana Claudia in Albuquerque, New Mexico, in English language (4 min.)


In 2008, Ana Claudia was diagnosed with multiple sclerosis. A few months after her diagnosis she heard about a treatment, using high doses of vitamin D, being prescribed in her home country of Brazil. She researched the treatment, decided to try it, and went to Brazil. At that time she was using a conventional pharmaceutical MS drug, Copaxone. She stopped taking Copaxone about 2010, and has used vitamin D exclusively since then.

(@3:13) She says: "So, until that happens, I have to ask you please, please, please check your vitamin D levels; and keep optimal levels of vitamin D; whenever possible, get out in the sun for a few minutes because it is very good for us."

She answers a question in "Comments:" I take 50,000 IU a day. This dose can only be taken with a doctors supervision. The upper limit safe dose adults can usually take on their own is 10,000 IU. I take other vitamins and supplements as well, such as omega 3, complex B, magnesium, etc. But according to Dr. Coimbra, the vitamin D is 95% of the treatment, everything else is just a complement."

[Scott1]

Hi,

If you have NMDA antibodies then you do have something considered rare. Your should be treated with IgG infusions after they do a few protocols first. If your doctor doesn't know then that is code for not looking rather than anything else.
Here are some websites in the US
http://www.iggamerica.com/AboutUs/CompanyOverview.html
http://primaryimmune.org/about-primary- ... eficiency/
http://www.antinmdafoundation.org/the-i ... ephalitis/ (a later edit, it wasn't here when I first replied)

If they know it was found in 2007 then they should know who discovered that and take the initiative and call them. Giving you a bump and calling for the next patient is immoral.

Regards,

[kw202]

I don't have any specific advice on your condition because I'm brand new at this too, but I just want to say: Don't give up hope. This doesn't have to be your life forever, and you CAN get better.

Read all you can, here and elsewhere. Look into diet and supplements. You're in control of your life and your health, even if it doesn't feel like it right now.