MS Questions

[jcb267]

Back in 2007 a neurologist discovered that I had a demyelinating condition in my brain, it was revealed through an MRI.  After that I had a Lumbar Puncture, my spinal fluid was clear and showed no demyelination.  Following that I had an evoked potentials test and my optic nerve showed no signs of demyelination either.  However, since 2007 I have been suffering from very sore legs and feet and my balance is very poor.  It is definately getting worse too.  Recently, I have had to miss a few days of work due to sore feet/legs - when I put pressure on my feet I get a very sharp pain in the heel of my foot that travels up my calf.  When I stand up I have to hold something.  When I walk I drift badly and have walked into several walls.

Yesterday I went for my eye checkup and the doctor gave me an OCT test.  My eye sight was fine but the OCT was abnormal.  Does anyone know what that means?  

Does anyone have any suggestions?  The neurologist(s) that I see don't!

[jcb267]

I thought it said a lot that she even ordered it too.  The only thing she told me was that the test was abnormal and that we should repeat it in a few months...

I am not really sure what that means.  I am going to see another neurologist today though, we'll see what happens.

Thanks, Shell!

[jcb267]

I have an appointment with another neurologist (Dr. Greenstein) at the BIDMC this afternoon.  I will make an appointment to see Dr. Stein then.....

Thanks!!

[jcb267]

Thanks for the info!

It is really frustrating dealing with all of these neurologists.  I have to do see one again today at the BIDMC in Boston.  I have a visit note from the Partners MS Center for a followup opinion I had in 2008.  I am going to bring it with me today because there are several areas (at least 4) where I had little or no symptoms at all that have progressed into very bad symptoms today.

If you dont mind me asking, how were you diganosed with acute Dissemenated myloencphalitis?

Thanks again!

[sllowe]

Hi there,

While abnormal optic nerve damage can be caused by things other than MS, it says alot for this doc to have ordered it, because results can be used as another tool in the investigation.

What did the doc say about the abnormality?

-Shell

[fortywhat2]

Dr Stein is an MS specialist... Were you able to get intouch with her?   Please let me know how you make out if you decide to see her.

Debbie

"live as if all your dreams came true"

[debgen]

Welcome to our community!

I your mention of having a demyelenating brain disease really caught my attention. I am so sorry you are going through this.

30 years agoI was dignosed with Acute Dissemenated myloencphalitis, which is a very rare demylenanating disease. I have had many of the symptom that you have described.

I totally feel you frustration with neuros. It can be maddening! It took them 25 years to finally dx me with MS and get me on a DMD. I was on Copaxone for 18 months and unfortunately it stopped working after about 10 months and my condition has deteriated. I am now being tested to start a new DMD.

My advice to you is try and find a good neuro center which not only specializes in MS but has knowledge off other demylenating diseases as well. My personal experience is that although my original disease has clearly progressed to MS, my MS is considered atypical due to the original classification and it often baffles the specialists.
Try and be proactive, do some research and try and find the right neuro to help you find the right path!

I wish you the best of luck on your journey!
Keep us posted :)

Good luck!
Deb

[jcb267]

Thank you.....I go to the BI now!  I will give Dr. Stein's office a call tomorrow.  I currently see Dr. Patricia Greenstein at BI.  I really like her a lot, she is very nice.  Her speciality is genetic neurology.....

[fortywhat2]

Hi...
I noticed you went to Boston... I have a great MS specialist at Beth Israel.  I would call the MS clinic at BI for an evaluation.  I see Dr Marion Stein and love her.  Good Luck!
Debbie

[jcb267]

Thank you, supermum!  I really appreciate the information.

Your summary of what is going on with me is correct.

I was sent to see a doctor at the MS clinic of Partners Health Care in Boston back in 2008, it was her feeling that I did not has MS.  I distinctly recall her saying that I did not have it at that time but I should keep an eye on the symptoms that I am having because they could get worse (they have) and I may be diagnosed with MS in the future.  Some of the symptoms she identified in her note like speech, swallowing and dizziness have definitely gotten worse.

I am going to call her office first thing on Monday morning and make an appointment to see her.

Thanks again!
jcb267

[jcb267]

Thanks for the information, myrudy!  I do not recall them telling me that there were lesions present, does the fact that lesions do or do not exist mean anything?

I do have some stenosis in my cervical spine.....I have these symptoms too - feet and leg pain, feelings of heaviness, and stiffness of the legs and balance problems......

I identified an MS specialist that I am going make an appointment to see first thins monday morning.

I am very frustrated with Doctors!

Thanks again!

jcb267

[supermum_ms]

Hey and welcome to our little corner of the web, you may find our health pages, (just to the right of your screen) of some interest to you.

So is that what your saying? About 5 years ago you were dx with a "demyelinating condition" after an MRI showed demyelinating brain lesions but it wasn't specifically named MS due to a negative LP for O bands and a clear EVP for Optic Nuritis. You have never fully recovered and in recent times these same sx have actually worsened, and during your most recent eye exam the OCT detected an abnormality even though your sight was normal.

If i were you, i'd be seeking a neuro that specialises in MS because its highly possible that after 5 years things have changed enough to specifically name your demyelinating condition. Its shocking that you've been seeing a neuro all this time with out insight or enough help, have you had any other MRI's since 07, brain and spine?

An abnormal OCT could indicate a number of things, i'd think it would be important to ask the opthalmologist/optomotrist who did the OCT what the finding actually are. At a guess considering everything youve said, i'd be thinking ON but it could be something unrelated to MS, so i'd be asking what was found. Time for a second opinion with a specialist sounds like the right thing to do in this situation.

Cheers..........JJ

[myrudy]

Considering the fact that you have a Demeylinating Disease going on in the brain could signal a possibe MS Diagnosis. Did you also have Lesions? If so, where were they in the brain?  A negative LP does not always indicate there is not something going on. A Dr should take all objectives and clinical findings from the tests before making a diagnosis. When I was diagnosed in 2010,  my Dr has made a grave mistake,  and I did not have MS. I had even been on Injections for this.  I have corotid artery problems in my brain and stenosis ( narrowing of the blood vessels). The lesions I had were NOT related to MS but something such as Migraines. Balance and leg pain, feelings of heaviness, and stiffness of the legs, can all be related.  I would stongly suggest you see an MS SPECIALIST as I did. He can look at your MRI and tell you what he thinks. That would be my suggestion for you with your symtoms. myrudy