Diagnosed MS now 2nd opinion says Not so

[Keep on Pushing]

Hello,

I was diagnosed with MS earlier this year. I am 52. I started having symptoms of numbness, tingling in my legs, shooting pains in my knee caps, stiff finger joints when I wake up. I had full blood panel workup to eliminate all other diseases that could mimic MS.

Had Head MRI without contrast and showed one lesion and my spinal tap showed 3 protein bands present in spinal fluid. My neurologist told me that the bands in spinal fluid confirmed MS. He started me on Copaxone 20mg.

Also, this same neurologist informed me that MRI of C and T spine showed I had arthritis in my spine.

I relocated to Georgia during summer so had to find a new neurologist. When new neurologist reviewed my MRIs and spinal tap results. He told me that he didn't think I had MS. He ordered new head MRI with and without contrast because I never had one done with contrast. Told me to stop Copaxone until it was determined if I had MS.

Meanwhile, he sent me to MS specialist and he also concluded after reviewing new MRIs and looking at my spinal tap results that I did not have MS.

Mainly, he pointed out that a person who has MS does not have protein bands in their spinal fluid AND blood serum. Told me that I should concentrate on finding out why I have protein bands in my blood serum.

Also, stated more concerned about a disc in my spine in neck area that is pressing on my spinal cord.

Has anyone else been diagnosed with MS and had protein bands in both spinal fluid and blood serum? I am really frustrated and confused now.

Also, I have numbness and tingling in my face and I have a puffy spot on my both my cheeks and my face feels tight sometimes. Also, my scalp feels numb sometimes on one side when I lay down at night. Also, I have pain in the back of my head that comes and goes. and I have pain on the side of the lesion.

Can a disc pressing on my spinal cord cause facial numbness and scalp numbness that I feel?

I feel lost because I had accepted I had MS and now 2 doctors are telling me that I don't. But, I still feel I have symptoms of MS.

Thanks for listening.

Keep on Pushing

[SNOOPY]

Hello Keep on Pushing and welcome to MSWorld

Mainly, he pointed out that a person who has MS does not have protein bands in their spinal fluid AND blood serum. Told me that I should concentrate on finding out why I have protein bands in my blood serum.

Lumbar findings which could help support a diagnosis of MS:

There are two or more bandings found in the CSF and not in the blood. This may be a sign of multiple sclerosis or other inflammation.
http://www.nlm.nih.gov/medlineplus/e...cle/003631.htm

I had a Lumbar Puncture in the diagnostic process. I had 4 o-bands in the CSF but not in the blood.

Information on the Lumbar Puncture and what abnormal finding can mean:
http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

Can a disc pressing on my spinal cord cause facial numbness and scalp numbness that I feel?

If there is vertabrea/disc problems and those problems affect the spinal cord (compromise, compress, ect) you can have Neurological symptoms.

Hope your Drs. can figure out if you have MS or not. There certainly is no reason to continue on MS treatments if MS is not the cause.

Best wishes

[22cyclist]

Hi, and welcome to MS World! It sounds like you need to possibly see a Rhuematologist. Many of the diseases they work with have bands in the CSF and the peripheral blood. For now, it seems you don't have to worry about MS. It is good that you got a second opinion by an MS specialist. They know best.

Good luck and let us know how it goes!
Take care
Lisa

[Keep on Pushing]

Thank you for the warm welcome to MS World. I appreciate the links provided for translation of LP reports. When I go to my neurologist next week, I am going to ask him about the rheumotologist also.

I still have to find a PCP. I will keep the board posted and let you know if anything changes with my diagnosis.

Kindest regards,

Keep on Pushing

[Keep on Pushing]

I have been 're-reading my LP results and doing more research. This is what my results said. "The patient's CSF contains 3 well defined O bands that are also present in patients corresponding blood serum sample, but some bands in CSF are more prominent. this pattern is associated with guillian barre syndrome, peripheral neuropathy, or increased permeability of the blood brain barrier secondary to infection or trauma "

My question is about the phrase I put in bold about bands being more prominent. On a University of Birmingham in the UK website it states that one can have MS with o bands present in BOTH CSF and blood serum but there will be more bands in CSF.

Does the "more prominent " on my report mean the same things as "more bands"?

Also has anyone else on board been diagnosed with MS with o bands in CSF and blood serum?

Additionally my Dr has ordered New blood work panel and more MRI of my neck and spine. He and MS specialist still believe I do not have MS. Checking my blood again to find out why o bands are present.

[Jennagain]

Always a Mystery

I feel your frustration and no how hard it can be when you think you have answers and then you don't. I would continue to pursue a proper diagnosis until there are no more answers. Try not to stress and remember your issues are real and caused by something. Whatever it is it will eventually reveal itself one way or another

[cearearose]

MS or disc in neck

The disc in your neck can cause the numbness in your face and scalp. If it is compressing the spinal cord it can also cause the numbness in your legs. The lesion on tour scan is a clear diagnosis of MS. Don't let the Drs bully you into thinking that you can only have one medical issue. I have 4 separate chronic pain issues. Stay on them and fight. Tell them you dint care what they think just tell them to do whatever test they need to in order to make the correct diagnosis. If you need to change Drs don't be afraid to do it. Good luck ��

[suziq38]

My first neurologist said I did not have MS and cleared me for c-spine surgery.
I got a 2nd opinion, and the new neurosurgeon was not convinced it was a repairable c-spine injury, so he sent me to a highly regarded MS specialist.
The MS specialist did all the same tests and more.
Everything was negative.... LP, brain MRI, blood tests, and my MRI's of my spine: Cervical, thoracic, and lumbar. The only questionable area on my spine was a brightly lit area on my neck (c-spine).
Anyway, we just waited until I got worse and got the feeling this wasn't mS so I went ahead with my surgery. After the surgery, I only got better, day by day.
The MS neurologist wanted to put me on MS medication as I was still feeling some symptoms. I decided against it.

It took about another year and a half until the MS specialist finally told me, "I don't think that you have MS."

To make a long story short, MS is very hard to diagnose and to treat. That is my the Limbo stage is so annoying.

Best of luck to you. Take things day by day, and I hope you improve and don't have it.

[Keep on Pushing]

I received results of mri of c spine and lower back. It showed I have 2 discs in neck and in back pressing against nerve. Neurologist said that is what was causing numbness tingling in legs. He has referred me to a spine center to talk to a dr about surgery to correct problem.

As I look back on my journey, if I had not relocated to another city I probably would still be taking daily injections for MS which was a misdiagnosis.

Thanks to everyone who responded to my thread.

[aspen]

Wow! I'm so glad this was figured out! Not that spinal surgery sounds like a boatload of fun either, but I'm hoping this clears up your neurological issues.

Makes me feel better about being in limbo -- so many other causes for these symptoms and being treated for MS in error is not to anyone's advantage.

I'm curious -- the one lesion you had in your mri. Was it stable? Just wondering whether someone would continue following that.

Best wishes as you continue your journey.

[22cyclist]

You do not have more o-bands in your CSF than in your serum. They are the same number. Nevertheless, for a diagnosis of MS there needs to be at least 2 or more lesions in the brain or spinal cord or at least 4 or more o-bands that are in the CSF. You meet none of these criteria, so you can breathe a sigh of relief. Sounds like the disc problems are causing your symptoms after all. This is good in that they can be repaired by surgery and you will not be saddled with a degenerative disease.

I hope you start feeling better soon, and hope you find some good pain management.

Take care
Lisa

[SNOOPY]

Wow, Keep on Pushing I am so sorry.

I hope the Spine Center can offer some you a positive outcome. I am very happy you do not have MS

I received results of mri of c spine and lower back. It showed I have 2 discs in neck and in back pressing against nerve. Neurologist said that is what was causing numbness tingling in legs. He has referred me to a spine center to talk to a dr about surgery to correct problem.

As I look back on my journey, if I had not relocated to another city I probably would still be taking daily injections for MS which was a misdiagnosis.

Thanks to everyone who responded to my thread.

[suziq38]

My MS specialist and his fellow wanted to put me on MS medication, too!
He is a highly regarded specialist, so I felt bad telling him that I would not take the MS meds without lab and MRI results that pointed to MS. In the absence of such, I will just go on and have my surgery.

For me, the surgery helped a lot.

Five years from now, I could get the results they were looking for (MS), but until then, I prefer to think that I don't have it.