Multiple Sclerosis Community

Terrie wow, you dont know how bad I need you guys to reassure me I am not crazy and I know what I am talking about. His grandma told me yesterday, get away from the ms stuff because I dont think its that!!!!!! GRRR I wont be asking advice from her anymore, she said she thought it was fibromylagia......

Anyways, we go back to this same reg "small town usa" doctor monday. My husband still has not been granted a referral to a neuro!!!! But, I am demanding on monday.

Actually at the beginning he wasnt going to do contrast. But, I called and had that changed. I didnt know it was just going to be the lumbar region. I guess he did that because the lumbar nerves is connected to the legs. BUT still do the WHOLE spine!!!!

The doctor is probably not going to like me going in there say, yeah it was neg but you didnt do the whole spine when ms lesions are usually in the cervial spine and thoratic spine. But, thats just too dam bad!!!

I printed a bunch of information of for my husband to read on last night. He understands why I think its ms and what test need to be done. I will have to FIGHT with him to do another mri because the costs...I know I tell him DAILY nothing is worth your health!!!!

He has way too many risk factor for ms. THREE!!!! His legs hurt so bad last night. It was painful too walk again..I made the doctor call him in baclofen its 10 mg it helped some but not a WHOLE lot. I told him to try 2 capsules tonight.

There is a really good ms clinic in Oklahoma City. There is a neuro/opthomoligst that opened it up. Which I think would be worth going to. It is 3-4 hours away....IFFFFF I could get my husband to agree to that.....

oh yeah to your other question, everything came back fine. Nothing was abnormal.

hi candy----i can certainly understand your frustrations! i actually was lucky(not really) when i got my dx.....considering there are/was 5 other family members in my family that has MS...he really gave me a easy dx. he did all the tests.mri,evoked potentials, etc....said it wasnt neccasary to do the lumbar punture, all the results of the tests,and my exam was enuf for my ms specialist to give me a dx.

you are not crazy candy....please try not to stress! i will hope and pray for some answers SOON for your hubby/(and you ). Hang in there kid....praying for ya.

warm hugs candy---sara

Hi Candy,

I can't type too much as I have a terrible headache (the doctors say migraine) that has lasted five days, so I'm also worn out.

But I had to tell you, you are NOT crazy! Good for you for standing up for your husband! Especially so early in the game. I have been actively trying to find the answers to what is wrong with me for five years now, and I still can't seem to stand up for myself like I should.

My PCP is a small town doctor, but he cares and is trying his best to help figure out what is going on with me, and he admits that he has no idea. He tries to do research online and sends me to specialists.

I have MS and was diagnosed on 2-7-08, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome in July of 08. But neither of those explain my most troubling symptom. I am still fighting to try and get an answer to that.

I am 24 and a lot of times it feels like I should just be able to enjoy my kids being little and being a stay-at-home Mom, but this is just how it is. It is very stressful, especially to think of what my illness does to this family. But that is where this site helps so much! The people here are excellent, as you already know.

They may not be able to be there physically to offer a shoulder to cry on, but it helps to have people who know what you're going through. I find it is better for me to come here and talk to people about my symptoms or dealing with this MonSter than anyone around me (who are all very supportive), because everyone here understands.

You are a wonderful wife to be so strong in trying to help your husband get a diagnosis. Don't ever think you are crazy, and vent here when people try and make you feel that way.

Okay I don't think that came out the way I wanted, sorry, I can't think clearly right now. I got a lot more out than I thought I would, I just wish it made sense.

Just try not to stress to much, take a deep breath (it really does help), and go cuddle with your hubby for a while. I find that just laying in my hubby's arms is my biggest stress reliever. You will get the answers and help he needs, it's just going to take some work.

Hang in there and have a good night.

Kristie

Sorry I couldn't read everything--tired eyes today--so hope I don't repeat other people.

I also was initially ordered MRIs of the brain and lumbar spine with and without contrast by my PCP. The brain was to check for MS and the lumbar was to check for other back problems. They really don't use contrast for the lumbar MRI because the spinal cord ends before the lumbar spine area. There are bundles of nerves 'floating' in that area but they wouldn't show MS lesions.

I think the rationale was to pick the fewest tests with the greatest chance of getting accurate diagnostic findings. It turns out that I've got areas of hyperintensity in the brain (indicating MS) and severe arthritis in the lumbar spine that is causing a lot of pain.

So now I'm getting epidural injections for pain relief and next week the neuro wants a cervical spine MRI to try and firm up the MS diagnosis by finding lesions in a second place (I think).

Unfortunately, it's possible to have more than one diagnosis to deal with and it really can confuse everything along the way.

I hope you and your husband get the answers you need. He is fortunate to have such a wonderful advocate fighting for him!!

~Mary

I think his doc was not thinking MS, but something more like an impinged nerve in the lumbar area that would effect him from the waist down,. Usually MRIs for MS are done of the C-spine and T-spine...not lumbar. And of course they are done of the brain.

You def need a specialist....