Clinical diagnosis?

[Gary487]

My neuro said he is diagnosing me with MS based on radiology and Lumbar puncture but is not clinically diagnosing me .Im confused does this mean I officially have MS or not?

[kwarendorf]

It sounds like you will benefit greatly from DMD therapy. If the the drugs can keep your MS where it is you're in a good place.

I agree with you about the benefits of exercise. After my dx, 18 months ago, I figured I better clean up my act. I cleaned up my diet, started exercising and lost 45 pounds (20 kilos). I feel great for a 53 year old with SPMS :-)

Kyle

[Gary487]

Ive had no major  impairment as such although I did have a slight weakness in my left side a couple of years ago which again I put down to an injury-only lasted a week.Also had slight vision problem just before DX at the time of the headaches which disappeared after a couple of weeks.I suppose both of these could be counted as relapses....
However currently I am stronger than Ive ever been, seriously.I highly recommend resistance training to those who can
Im 52 and 79Kilos (losing 4K of body fat with new diet) and benchpressing 110K!
I must have had this at least 4 years which was when I had first MRI due to dizzy spells.These showed 2 very small lesions which they put down to age.However new MRI showed changes hence diagnosis

[kwarendorf]

I was "lucky" enough to have a very short diagnostic timeline. And like you, I have some symptoms that are with me every day.

What is different is that you don;t seem to have had any major relapse. When I started to put a symptom timeline together, we were able to determine that my first relapse was 20 years before my diagnosis. Have you never had a period of significant impairment? Enquiring minds want to know! :-)

Kyle

[Gary487]

Hi Kyle.Its a strange one...
Had chronic headaches for 6 months eventually referred to Nuero.He thought it was nerve problems due to excess weightlifting and sent me for MRI.To his surprise this came back as changing white matter when he compared it to a previous MRI 4 years earlier...completely unexpected in his view as I had passed his intial nurology test which showed no symptoms-I even asked him about MS (my mother has it) and he said I didnt have it and he said he would be amazed if it was.
However went for new MRI scan with dye.This came back as inflamed CNS.A lumbar punture confirmed MS.The entire process took 3 weeks!
He was still amazed i had it and said to keep on and change nothing.
Now i have some symtoms..Lhermites sign  and tingly legs when I run.
However touchwood I am still strong.Im actually stronger than before and resistant training is working fantastically well for me with Gluton/dairy/sugar
free diet

[Adnvwsti]

I'm with Kyle on all points.  I had one "poser" neuro who changed my clinical dx of certain MS to a dx of "probable MS".  Many of these neuros don't know that much about MS and can give you dx's that do more harm than good, leaving you in limboland with insurance companies, DMD treatment providers, etc.  I think you should keep taking your records and seeking a new opinion until you have an opinion that isn't quite so shaky.  

[kwarendorf]

Until you have a neuro swear in blood that you have MS I would not mention it to any insurance company :-)

I'm curious. If you have no symptoms, what lead you to the neuro's office? For years prior to my DX I had a collection of little niggling things that were more annoying than anything else. I figured they were part of the aging process. They in no way shape or form seemed connected. Turns out they were :-)

Kyle

[Gary487]

I suppose the answers to the questions above would be yes on all counts.Not sure about the number of lesions but he mentioned changing white matter and and more lesions since an MRI scan I had four years ago...
I suppose my question is do I have MS officially  as have little symptoms and no clinical diagnosis.Do I mention in Insurance etc etc
Seeing him again in early June so will ask all the questions

[zoefromsussex]

If he's actually diagnosed you then I'd say you officially have ms. I'm surprised he doesn' want to wait for further episodes though. I had a positive lp, vep, mri etc but still wasn't given a diagnosis until a further bout of optic neuritis. Like Kyle says though, maybe you should put this question to your doctor for absolute clarification. If he has diagnosed you on the basis of the lp & radiology then he must be pretty certain it's ms. Did you have a lot of lesions perhaps? Maybe that helped?

[kwarendorf]

Hi Gary,

It sounds to me like your doctor is confused :-) I would ask him the same question you have posed here. I have more often heard of people who show all the clinical signs but don't have the correct testing results to support a diagnosis.

Did your MRI's show both old and new lesions? Did you LP show o-bands in the CSF but not in the serum? These are the traditional brass rings of MS diagnosing. Have you had blood tests to rule out MS mimics like Lyme Disease?

Kyle