frustrated!!!!!!!!!

[nee619]

I have been struggling for the past 8 months with issues that may be related to MS. The docs cant seem to find out what is causing the weakness, wetting and loss of bowels, numbness, fatigue and pain. I am at a stand still right now. I have had an LP the showed the oligoclonical banding and the elevated white count but the MRI of the brain and C-spine showed no lesions. I was wondering if the lesions could be further down my spine. My neck hurts constantly as well as horrible muscle spasms. It feels like my muscles are trying to rip away from my bones. I am stuck dont know what to do. If anyone has any suggestions I would be so greatful!

Thank you!!

[JerryD]

This sounds very aggravating. I would say your docs aren't looking in the right places.
Have you had your vitamin D levels checked? How about hormonal imbalance? How about checking for food related sensitivities? The docs scare me when they offer no solutions. How about you? Difficult to trust them .

[Redwings]

Hi nee619:
When you say "the docs can't figure out...," which docs are you referring to? How many have you seen and what are their specialties? Are they your local "insurance" docs, or are one or more of them associated with a large multidisciplinary clinic or university medical center?

Generally, when someone gets stuck in the diagnostic process, the best recommendation is to get another opinion, and another and another, going to the best specialists they can afford and physically get to, until they have an answer or an understanding of why an answer isn't possible.

If you have O-bands and neurological symptoms, the logical thing is to consider the different conditions that can cause them, then test you with as many different tests as it takes to identify which one your case most closely resembles.

There are other tests that can evaluate for other causes of your symptoms or to help support a diagnosis of MS in the absence of lesions on MRI. You didn't mention what other tests you've had, and you didn't say what your doctors have said about your test results, so it isn't possible to tell how thorough your workup was.

But if you're having lower body symptoms and you didn't have a thoracic MRI after brain and cervical MRIs showed no lesions, then it sounds like your MRI workup was incomplete.

If your current doctors don't know what to make of O-bands and neurological symptoms, it's time to move on to another neurologist for further workup and another opinion. Your local chapter of the National Multiple Sclerosis Society can give you the names of neurologists in your area who work with MS patients.

http://www.nationalmssociety.org/fin...ter/index.aspx. The neurology department at a large university medical center is another option. If you already are going to one, then find another one and go there if you can.

If you haven't already, you can go the the NMSS website and familiarize yourself with how MS is diagnosed so you can ask informed questions of your current and next doctors. http://www.nationalmssociety.org/abo...-ms/index.aspx.

Your doctors might be stuck, but you don't need to be.

[nee619]

Thanks!!!

I have had just about every test you can name, lyme, RA, Devic's, neuro sarcodosis, vit d level is low but I take supplement. I have had testing for pinched nerves, evoked potential, EMG, EEG, two brain MRIs and one c-spine.
Been to a "big time" university hospital and got NOWHERE!!!! They would not return my calls for weeks. 2nd doc told me that it was all in my head & I needed a psyche work up. 3rd doc wants to start over from the beginning in order to do everything he wants his way.
I have been to the MS web site and the same docs in my area, are the ones that I have seen or do not specialize in MS.
Thank you for your suggestions.

[MinnieGirl]

Hi nee

I went through the "it's all in your head" six years ago when my neck issues started. One year later, after I was finally referred, I had a cervical spine MRI that uncovered a lot of things that basically means that my neck is a mess.

Now my symptoms have changed and begrudgingly I am seeking answers once again. Just wanted you to know I understand. It is very frustrating when these odd things happen and since you aren't a textbook case of whatever it is, you are dismissed as having mental problems.

Hang in there! I hope you get some answers soon.

Hugs,
Minnie

[nee619]

Thank you Minnie!!

I almost lost it when the doc told me it was in my head. It has been a nightmare. I am hoping that i find some answers soon!