Neurologist has given up. Looks like PPMS.
 

The neuro follow up today was as always more bad news. Ty isn't working. She wants me on it for 3 more months, and we will redo my MRI. If there is no siginificant improvement in june, she is pulling me off of it and I am going to be shipped out to UVA for clinical trials.

As of today, she says it is most likely PPMS. But she will not write it on the chart because the insurance co will not cover anything. And I left with a whole stack of prescriptions. Lets see, we have.... tramadol, voltaren, ambien, neurontin, provogil, detrol, and celexa.

Oh and she is mad that they didn't do the blood work at my last Ty infusion. She told me next time they try to skip the bloodwork I am to refuse the infusion until they contact her.

Wants me on Ty for another 3 infusions to have at least 6 months to look at for the studies, but told me not to get my hopes up.

So that's where we are today. Nothing she can do for the numbness, nothing for the ear ringing or the ON since it is brought on my over stimulation and not just from lesions. Nothing she can do for any of the other symptoms, if the tramadol/voltaren/neurontin don't help with the aches and joint pain, she is recommending that I reconsider opiates.

Sorry for the bad news. I'm glad, though, that the Neuro isn't putting the dx in your records just yet. Insurance companies don't play fair when it comes to that dx.

Do you know which trial you'll try first?

Sorry about the possible dx. :hug: Maybe now SS will listen.

I'm so sorry about the bad news Leggz. I hope SSA will come through soon.:hug:

No idea what trial she is looking at. The one that I really wanted to do, I was denied for. And I don't know if she will send me in for PPMS studies or not, so I don't know. But it looks like I have 3 months to see what studies they are doing there.

:hug: Sorry for the bad news you received. :hug:

I wish I could say more, but words fail me. I'm sorry for the bad news and possible dx. :hug:

I'm sorry for that news - but glad that 1. your neuro isn't rushing to put it down in your charts and 2. she hasn't given up on you!

I don't think 3 months on Tysabri is really enough to decide it isn't working yet. 6 months is also low, too, but obviously better than 3. Hopefully you'll show some improvement.

Finally - for those of you on Facebook - you will get this - this is one of those posts where I really wish there was a "dislike" button!! ;)

Legs, That sure is a lot of medication. I hope one or all of them help you. I use Tramodol when I have tooth or surgery pain. I can even use it with the LDN. It is not an opiate, but acts like one, for short term use. I get a few hour of pain relief from it.

I am sorry that you have a new label. I hope she is wrong and the Ty helps after a few months. What about NOVANTRONE® (mitoxantrone)? Have you tried this one?

After you clear the Ty out of your system, if she has you switch, it might help you.:)

I forgot to mention Ely Lily and company has a drug in cliical trial for pain.


Duloxetine for Multiple Sclerosis Pain Condition: Multiple Sclerosis
Interventions: Drug: Duloxetine HCI; Drug: Placebo


I can get more on it tomorrow if your interested.

Feel better soon. :hug: