Thank you for the advice about posting, I had no idea about that. I just started and couldn't stop. I will try to use proper paragraphs in the future. Not generally a problem for me. I was just very emotional when I wrote it.

You can go back and edit your post to make it easier to read.

How can you to edit a post, would be happy to. Or I could repost in the thread with paragraphs. Once I tried to re-read it I realized how hard it is to read.

My posts have a button at the bottom that says 'edit' so I assume yours do too.

Um, there may be a time limit on the editing. My earlier post in this thread doesn't have that button at the bottom, for instance.

I believe you can ask a moderator for help with editing though.

EDITED TO ADD: This is from the FAQ (see link at the top of the page):

i went back and read your post. you've been thru a lot.
i don't blame you for being scared.
your dh sounds like one in a million.

your neuro sounds great too.
i hope the interventions help you.
please keep us up to date on how you are.

*Re-post broken up for easier reading.


I was diagnosed December 2nd last year, so it's been a little over a month. After the dx and some soul searching I realized I've been battling attacks since I was 9 years old, but I had parents who assumed I was being a brat and just didn't want to do things when I was nearly paralyzed because I got better after a day or two.

I can remember about 5 very distinctive episodes prior to turning 22. At 22 I started having severe chronic neck pain that would not go away, I had had 2 severe car accidents in 2 years and a domestic violence situation. All three had done series damage to the soft tissue in my neck and I assumed it would just be that way for the rest of my life, never sought medical attention because I could live with it and my parents had taught me just to tough it out.

I lived a full life running, hiking, college and on to a career. At 27 my husband and I decided to have a child. It was the best time of my life! When most women I met were complaining and miserable I never felt better. Pregnancy was the best I've ever felt in my life. I use to sit there and wonder if this was how people in general felt everyday. I felt I could do anything, take on the world and my neck pain was gone.

By the time my son was 18 months old the back pain started. Chronic burning with what seemed to be abdominal wall failures. After a bad spasm I would look 6 months pregnant again. I was exhausted all the time, having memory problems, I had to write grocery lists for the first time in my life.

By the time my son was 2 1/2 I started having foot dragging, I had to stop wearing flip flops and I started to see a chiropractor. I had been talking to my GP about all my symptoms but he was convinced it was all new mom stuff, lack of sleep, being unhappy about my body and never took me seriously. I was working part time so I did not have health insurance.

By the time my son turned 4 I couldn't stand for more than 10 minutes without my abs failing and my legs threatening to give out. I went back to work full time so I could get health insurance and finally find out what was wrong with me. By that point I had constantly burning sinuses, vertigo, walked into the door frame of every door I walked through and had a very large problem with the speech center in my brain. I couldn't remember the names of objects and would say the wrong words. I couldn't remember a conversation I had with my husband 20 minutes after we had it and I lived in a constant brain fog. I had zero energy and was falling asleep and my desk.


My GP ran a multitude of tests and found everything was normal. He mentioned MS and said we could do an MRI for whatever good it would do you to know that you have it, there isn't much they can do about it. He ultimately diagnosed me with depression, wanted to prescribe me anit-depressants and gave me a referral to a counselor. He really did think it was all a psychosis of some sort. I don't see him any more.

I left that appointment angry as hell, refused the prescription and the referral, called my chiropractor and asked for a referral to physical therapy. I spent 4 months in PT. When I finally stopped going I was in more pain than when I started and my walking got much, much worse.

I was now falling asleep at my desk at work and before dinner every night when I got home. A dear, dear friend asked me if I had ever considered Gluten as a possible cause to my symptoms. Reading up about Celiac disease and Non-Celiac Gluten Intolerance was incredible, I had so many of those symptoms.

So my husband decided we should try it. After 4 days on the GF diet my back pain reduced by 80%, my night time calf cramps lessened and I wasn't falling asleep at work.

4 months after that my son started getting nose bleeds everyday at school after lunch. His doctor said he was severely allergic to something and asked what was different in our home. I told her about our GF diet at home, but my son ate gluten at school. Doctor said take him completely off gluten he is also NCGI. He hasn't had a nose bleed since, except for the two times he unknowingly ingested gluten. He has had improvements in so many areas and grew 4 inches in the first two months.

About 6 months into GF diet I felt great, 90% of my symptoms had gone away but I still had a great deal of difficulty walking and my calf cramps were still constant and waking me up 4-6 times a night. I went to a new GP who ordered an MRI, that was December 2012. The radiologist read the MRI as completely normal.

My new GP sent me to PT again where I showed great improvements. I was steadily gaining stamina and muscle tone and was feeling really good. Still couldn't make dinner easily but I could wash dishes and for the first time in years I could fold laundry.

My husband needed to have a hernia repair and had been holding off for nearly a year until we paid off my medical bills and with the MRI coming back negative we decided to put me off for a year especially since I was steadily getting better on the GF diet. My husband was able to get his surgery, they discovered he had sleep apnea, so there were sleep studies and then a CPAP machine. By then we had maxed out his Out-of-Pocket for the year so he went to every doctor we could think of and received medical care and treatment for all the issues he had been putting off.

By October 2013 we had paid my husband's medical debt and decided it was time to get back to me. I had peaked out my recovery on the GF diet around August 2013 and my hands and shoulders had started to show signs of no longer functioning properly. I would have days where I couldn't type or write.

I finally saw a neurologist December 2nd 2013. He completely broke with protocol and stated 5 mins in to the appointment "You have MS." I kept on talking abut my symptom progression and he said "But, you knew that already didn't you?" I told him I had been fairly certain for a few months but I didn't understand how my MRI was clear. He said, quite heated and irritated "It isn't."

We finished our exam and then he took me to the office and showed me my MRI from a year ago and showed me 9 lesions. He has no idea how the radiologist cleared my MRI. I am scheduled for a follow up MRI and an LP next week, I will also have the blood test to see if I can do the tysabri infusions. I am on week 4 of Amprya and it is helping a lot but after my episode of paralysis at Thanksgiving I have not recovered much.

Yesterday was rough, first time my husband had to feed me, or rather he asked if I would set my pride aside for the night and let him feed me after watching me struggle so badly.

I have walked with a cane for over a year and will be moving to ankle braces and full arm crutches next month. I will also be getting my own CPAP. So yeah, I'm a little out of hope right now. And need to figure out just what the future looks like. After typing that novel I am now two finger typing because my hands aren't working, so that's enough for now.

I could not do one minute of this with out my dh, he is absolutely one in a million.
I loved my neuro but he is no longer seeing patients in my area. I see a new neuro on Jan 31st. I have my concerns but will have to see what she's like.

Thank you for breaking that up. You have been thru a lot. Im with your new doc, how could they miss 9 lesions? Just amazes me, all I have to say on that. Lots of good support here from folks who have been right where you are. Im a 21yr warrior and lots of folks with more fight in them then me. We are all here for you. Keep us up to date on how your doing and all. We all look out for one another here. You are not alone in your fight.

Met my new neuro today. I had my concerns, I know a few of her patients and they are not happy with her. We got along just fine. Had her joking and laughing and she does a very good job of monitoring her ms patients. She told me how she liked to do the blood test monitoring. And is a big advocate of Vitamin D therapy.

We looked at my follow up MRI and I now have over 20 lesions, compared to the 9 I had 14 months ago. I have spinal atrophy in my neck, I was not surprised. She is ordering a full spinal MRI to have a base because she strongly suspects I have spinal atrophy in my back as well.

She's referring me to PT again for assistive device assessment, OT to address my hands and arms issues and I decided on Copaxone to try as my DM med. I had already decided I did not want to do Tysabri, not with such a young child. She said that was good because I can't do it. I have extremely high levels on the anti body in my blood. Might explain why I really really felt that was the worst therapy for me.

I'm feeling more positive today. I told her about my early experiences as a child and how I was during pregnancy and she agreed I had classic MS progression and have been unknowingly suffering from this disease for a long time.

She answered all my questions and seemed very knowledgeable about all treatment options. I'm going forward feeling much more confident that I will be monitored and looked after thoroughly.