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do you have dmd treatment without lesions

I wanted to ask fellow members do you have disease modifying drugs without lesions as i have a major hurdle i have ms were there is medical evidence of relapses but no lesions so my neuro wont treat my ms and says no lesion no ms what is your view

 

hazexx

Hello Haze,

I've certainly never heard of anyone without lesions, or indeed without a formal MS diagnosis being prescribed DMDs, no.  I'm not clear whether you do have a confirmed diagnosis, do you?  If so, it would be unusual, but not impossible, without evidence of lesions.

One of the main aims of DMDs is to try to reduce the frequency and severity relapses, which tend to correlate with lesion activity.

If there's no evidence you have, or ever did have, any lesion activity, what would the DMDs be trying to stop, exactly?  I don't see how they would benefit someone who doesn't show any evidence of the disease processes they're aimed at.

Tina

Hello Haze.

                 I can well understand your confusion with this one. It must be like being promoted, but not getting your stripes. It seems a bit heartless of your neurologist, but I can imagine his/her dilema. I take Rebif, but still my MRI looks like a map of the M5. I can only think that you should relax in the knowlege that the MonSter isn't punishing you yet, and just reassess the situation as and when you have another MRI. Sorry that I can't offer any more cast iron advice.

                  Very best of luck with this,

                                                        Moira

thank you for replying

for 12yrs these neuros and there not newbies there supposed to be experinced have watched me detetrioate and done nothing and like pals and my hubby said ok if no ms then what by the time they do find out it will be to late my reason for the thread is they all agree a disease neurological and it is advanced by the loss of functions i have but cant agree what arggggg i feel like giving them a slap and saying excuse me i do want to exsisect t. Before i got sick my vision was perfect my body was doing the right thing now my body is in bits and my vision well there is much to say apart from partial blind.

Hazexx

I well understand your frustration Haze. i`ve been battling with neuros for 14 yrs…now waiting to see a top MS doc in Leeds.

But unlike you, I know there are no drugs to slow my deterioration down.

I feel for you.

luv Pollx

Hi, I was prescribed betaferon WITHOUT having had an MRI (or any other tests) so technically no conclusive proof of lesions but all my symptoms pointed to ms. I did eventually have an MRI but only so they could put something in my records, don’t know what it showed.

I suspect this was unusual though and it was a long time ago, 1995/1996.

Cheryl:-)

Hello, haze.

Yes, I am on Copaxone without any lesions (Brain MRI was clear).  What is needed is two significant events (say, relapses) within two years.  Could be vision problems, could be limb numbness, does not matter.

A good neurological examination will test the body for loss of tactile sensory function.  If they find any, it can be determined where in the spine the problem is located. If there is a problem - and mine is inflammation inside the spine pressing on some nerves - then that can lead to further nerve conditions.

You need a referral to another neuro, methinks.

Geoff

Hi, I was with an MS specialist for four years. In 2001 I was admitted into hospital and at the end of the week he thought it was MS but rare not to show lesions.

I'd had previous ON and this showed up as atrophy on my brain MRI. I had other positive test results, including an abnormal neuro exam which showed problems in my spinal cord.

I was told it would be benign so wouldn't be getting DMD's. My major symptom was spasticity which usually means it's a chronic problem.

2005 my condition had progressed and I was told we know something is wrong we just can't identify it and I was discharged. I now needed a wheelchair outdoors.

Now 2012 I'm still trying to get the right diagnosis. I take lots of symptomatic meds but like Poll I know there aren't any drugs to slow my progression down.

There are many other things that it could be. The longer you go on with symptoms and progression and no lesions the less likely it is to be MS.

I know it's frustrating but it's for your benefit you get the correct diagnosis. I'm now seeing a Professor in neurogenetics.

I hope your neuro's come up with some answers.

Jacqui x