Ever been told you don't look disabled enough

[Jenaw35]

Dx rrms 99. On copaxone for 12 years. No meds last 3 years.
Started have strange symptoms in September. Referred to multiple specialists.
MRI taken . Results. Tumor in frontoparietal lobe
Acoustic neuroma, chiari malformation.
T2 Flair hyperintensity, demylinating.
Referred to New neurologist and neurosurgeon.

Neurologist said new symptoms are not related to Ms. Which is possible.

Compared to last MRI. More lesions than 3 years ago but nothing active.

He then asked me if I ever had a traumatic brain injury. I said no. He asked me if I was sure. I think I would remember that.

He then asked me how sure my old neurologist was that I have MS. My response pretty sure he put me on injections for 12 years.

I asked him why he was asking me these questions.

He said I didn't look disabled enough for someone who was dx almost 20 years ago.
So I asked him if that means I don't have MS. He said no you probably have it.
But he doesn't want me to start meds. He wants to see me in 4 months and repeat MRI.

I told him. I have been talking and reading alot about the new meds and the importance of going on them sooner than later.
I told him even if my lesions aren't active the meds could slow progression.
He told me meds do not stop progression it can at best reduce relapses..
I'm hoping the neurosurgeon can help me but I am confused.
I mean no disrespect to anyone but am I less important to treat because I'm not severly disabled?

Sorry it's so long.
Thanks
Julie

[Marco]

I mean no disrespect to anyone but am I less important to treat because I'm not severly disabled?

You are MORE important to help keep you in the "less disabled" group.

I never understood a neurologist that wants you to be severely/permanently disabled before they want to treat you.

Do you have another option for a neurologist?

Please keep us informed.

[pennstater]

Agree with Marco. I would look for another neurologist, preferably an MS specialist. By preventing relapses that may cause damage, the drugs can prevent progression.

There were studies in the early injectable meds that indicated that while they stopped some relapses, they didn't change the length of time to SPMS. So maybe that is what your neuro is referencing. But I am not aware of any updated studies, mostly because the meds haven't been around long enough to evaluate these meds that have a higher efficacy rating at stopping relapses.

One question I would ask any new neuro: are they enrolled in the Touch program to prescribe Tysabri? You may not choose Tysabri, but you should have the option to consider. If a neuro is not enrolled, chances are they don't treat many MS patients. If you live in a rural area, it may be that you need a local neuro who partners with a specialist in a more urban center.

Good luck.

[Poolwatcher]

Geez. I would find a new neurologist who is a MS specialist

[Tia1]

Does he want you to first see the surgeon about the tumor before going on medication that you would need to stop? Did I miss something about the status of the tumor? Maybe, once you are cleared he/she would be willing to start medication.

I will be praying for you and hope that everything gets sorted out quickly.

[Jenaw35]

Thanks for responding

I'm am just hanging in there until I see the neurosurgeon.

I'm going to try to focus on solving some issues with him first.

I will probably ask him to recommend a new neurologist.

Maybe I was being overly sensitive with the new neurologist but I just couldn't believe his attitude towards me.

He made me feel like I was wasting his time.
Hopefully neurosurgeon can help with some.

Thank you for responding it's good to no that other people can relate to issues that even my close family and friends can't understand.


Julie