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Just Back from my 3rd opinion

Ok 3rd neuro in 3 years!

I went armed with copies of all my MRIs, plus a typed report of medical history with regard to neuro problems. She basically admitted that it is best to stick with one neuro, although different neuros may diagnose a different thing. The latter point I did not find terribly reassuring - ie do I just pick the DX I fancy. I explained that I just wanted to know which opinion she agreed with so I could follow that course.

Anyway she is going to ask her radiologist to review all my scans and come up with a report. Although she did say that it is possible to have a CIS possibly due to a virus then recover only to have spasticty develop over a long period due to some nerve damage that occurred at the time. Therefore spasticity can continue to get worse even if there is no new disease activity or progression.

I will wait and see what she comes up with.

Keep you posted

Moyna xxx

Hi Moyna

I can’t begin to imagine having to wait for so long and still not know whats wrong.

Stay strong!

Andie

Hi Moyna,

I agree with: “Different neuros might diagnose different things” not being terribly reassuring. I realise medicine is sometimes as much art as science, but I would like to think my diagnosis (of MS) was one not 9 out of 10 neuros would go along with, but 99 out of 100! I think consistency is important, and wouldn’t be very happy with a diagnosis that varies, depending on who I see, as that suggests the evidence is weak and unconvincing. I think a sound diagnosis needs to be one most specialists would agree upon.

I know a bunch of experts will never all agree on anything, but I’d like an explanation that satisfies most of them. You shouldn’t be in the position of having to pick who to believe, as how can you know whose opinion is right, or even more likely to be right? Deeply frustrating for you.

Tina

x

how is a possible different neuros can dx different things,i find that rubbish,sorry thats no dig at you tina,i just find it strange and worrying for me and other sufferers that we can get diagnosed different things from different neuros,i’m hearing so many bad stories about neuro’s,to say the least i wasnt impressed with my neuro on 1st appointment and dreading seeing him again

Moyna - very interested in your second para" possible to have a CIS possibly due to a virus only to have spacicity develop over long period due to nerve damage" I feel something like this has happened to me. How can they check out any possible nerve damage?

As my spacicity has worsened over 4 half years but MRIs clear Lumbar puncture clear.

My neuro has not mentioned this to me - I am on my 3rd neuro because he was the only one who ever listened to me.

It was almost 2 years after I had my initial virus that I had my spine MRI he did say any infection which may have been evident at that time could have healed - so frustrating. Transverse Myelitus was mentioned at this time, but again my LP was clear and I think some activity of infection would have shown up, not sure if thi is forever present or goes away. Moyna have you had an EMG regarding your spacicity, not sure if it would be appropriate but Im wondering if someone with Fibromyalgia who experiences stiff muscles would give a different reading to someone who may have MS. Everyone story andsymptoms with MS can vary so much at the beginning I was convinced it was MS and
I have 5 books on the subject to back this up over time it has waxed and waned but now Im sort of returning to this theory.

Have any of your neuros been MS specialists ?

Im seeing my neuro again in July so we will see what happens then.

Good Luck wit the Radiologists review!!!

Y

Anon, Why the anon, then, if you’re not having a go at me - or anybody here? You appear to have totally misunderstood my post anyway, as I was not posting in support of different neuros giving different diagnoses. On the contrary, I was agreeing with Moyna that I would not feel satisfied with a Dx that varied depending on who I saw. Tina

Hi Tina, I knew exactly that you were agreeing with me. I really dont know what anon was saying.

Hi Smarthope. My spasticity has worsened over 4 years too. My LP was clear too but I do have a lesion on my spinal cord which has been the cause of my problems. Spasticity occurs when there is a problem with the upper neurone ie lesions in brain or spinal cord or stroke. etc.

Do you have overative reflexes on arms and legs. If you have them in arms and legs then the problem will be in neck or brain. If they are just in the leg then the problem is below that area.

Spasticity in my calf pulls by foot/toe down giving me a spastic foot drop which makes walking difficult.

Take Care and thanks for the replies everyone

Moyna xxx

Hi Moyna - Thanks for replying my pacicity is just in my legs although I do get a burning sensation in my lower arms - deep joy!

I also have stiff hands sometimes in the morning which then disappears!

Recently I haveread the threads on FND and am tinking this may b a possibility altough my Neuro has nevermentioned this!

TakeCare

SH

Hi Moyna - Thanks for replying my pacicity is just in my legs although I do get a burning sensation in my lower arms - deep joy!

I also have stiff hands sometimes in the morning which then disappears!

Recently I haveread the threads on FND and am tinking this may b a possibility altough my Neuro has nevermentioned this!

TakeCare

SH