Not a Question - Just WOW

[davincidanes]

To refresh, I am in limboland with a pending MS Neuro Specialist scheduled for next month with very convincing (to me anyway), symptoms of MS.  I do have a history of cervical structural issues (spinal stenosis) and had surgery in 1997 to release a compressed spinal cord.  It helped a lot, but I have never been pain or symptom Lhermitte's free.  

I thought that it might be a good idea to get some of that history together to take with me in February.  I found all of my GP, Neurologist,, Neurosurgeon, Pain Management, MRI, Myelogram, X-ray, etc. reports going back to late 1996.

Just about every single report indicates the spinal stenosis and need for surgery, but they also state that a differential diagnosis of Multiple Sclerosis is considered and cannot be excluded.  So, WOW... maybe I have had it all this time, in addition to the other issues, just not diagnosed.  

So perhaps this information can meet the McDonald Criteria of space and time.  Hmmmm.......

[kwarendorf]

Ooops!

I had what I now know was a significant MS relapse. THis time I made it easy for them, as I rang every bell. I was lousy with lesions, my LP showed o-bands, my clinical exam would have gotten me arrested for DWI :-)

It seems that both major and minor symptoms were all caused by MS! And while it su*ks to have MS, at least I know...

Kyle

[kwarendorf]

Hi Linda -

MS can be the great connector of dots. We did a litlle medical archeology when I was diagnosed 3 years ago. We figured out that my first relapse had been 20 years earlier.

At that time my legs went numb, both legs and up to about mid-thigh. THey couldn't find a cause and the feeling gradually returned. Their cinclusion was some variant of Guillaum Barre.

Fast forward about 18 years. 9 months after I had a hio replaced I began having trouble controling my left foot, the same side as my new hip. I also had trouble with my balance and couldn't walk in a straight line. I figured it was related to the new hip, but hip doc couldn't nid anything, nor could the neurosurgeon who had fixed my back 10 months before the hip.

The symptoms resolved so I moved on. Along the way I accumulated some seemingly unrealted symptoms; tinnitus, urinary hesitancy, erectile disfunction among them. About 3 years after my hip replacement I had

[davincidanes]

Thanks John.  Of course, I don't seek or want to have MS, but a confirmed diagnosis would surely explain a lot about my health problems over the past 19 years and get me on the road to appropriate treatment.

Good luck in your quest as well.

~Linda

[johnniebear]

Hello fellow limbo lander...


I sure hope you get the Dx you seek,  I ve been here in limbo for many years,  

If you have time  look  at the pictures I've posted it has some of medical records..  


take care
John

[HVAC]

May be so. I was diagnosed in 2009 but two MS Specialists said I have had MS since I was 2 which is going on 50 years. Iwent to the Mayo Clinic when I was two and Duke when I was 7. They always knew I had something with the brain stem.

Alex