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:

Lady that would be great. Thanks.

Legz, sorry to hear about the news. :( But glad to hear your doc is sticking with you on this.

hugs and prayers. Im sorry for your news. :(

I am also sorry to hear this. That just plain sucks!!! Sounds like you have a good neuro. Take care!

:circlelove: (((((Leggzz))))) :circlelove:

Sorry Leggz, hang in there we are all thinking of ya!
I know I am a newbie, but Ins. won't pay for ppms? I need to read more I guess. I'm confused anyway, but the way things have went for me, I'm afraid, that could be what they tell me. I have just steadily gotten worse. What is the Dr. diagnoses ppms, right off the bat? They won't try anything to help then?
Take care, thinking about ya!

Therw are no drugs approved to treat PPMS. Only the symtpoms, so once she writes it on the chart, the ins co will stop all DMDs and not cover anything that might help slow the progression of the disease. Which stinks. But then again none of them have worked so far.

I see... I remember when the doc, first thought I had fibro, back in the day they thought it was a fluke, she told me she wouldn't put that on the chart either, then I would be labeled. What a crock!! It's not like we don't want to get better!! Don't give up, keep on fighting!! We're all in this together!! Right everybody!!

Here is the information on the FDA Clinical Trial for pain and MS.

Duloxetine for Multiple Sclerosis Pain
This study is currently recruiting participants.
Verified by Eli Lilly and Company, March 2010

Keywords provided by Eli Lilly and Company:
Central Neuropathic Pain
Multiple Sclerosis


Purpose

This study is designed to primarily assess the efficacy and safety of duloxetine 60-120 mg once daily (QD)compared with placebo on the reduction of pain severity in patients with central neuropathic pain due to Multiple Sclerosis.

Detailed Description:

Study is a multicenter, randomized, double-blind, parallel, placebo-controlled, 20-week trial with 4 study periods. Patients who screen successfully (Study Period I) will be randomized in a 1:1 fashion to duloxetine 60 mg QD or placebo.

Starting with Study Period II, patients will be treated in a double-blind manner for 6 weeks. Patients who complete the 6-week, double-blind period will have the opportunity to participate in a 12-week, open-label, flexible-dose portion of the study (Study Period III).

Study Period IV is a taper phase designed to reduce the occurrence of discontinuation adverse events. Patients may enter Study Period IV at any time after Visit 3.

Legs, **There are 32 locations but you can ask your Neuro for other participating locations.**

For more information see FDA Clinical Trials below

http://clinicaltrials.gov/ct2/show/s...ow_locs=Y#locn


.

:holysheep:


:mfr_wha:


:sorry:


:hug:

I just wanted to relay my story briefly. When all of this started happening, it was a rapid and radical decline. I went from walking and biking everywhere to walking with a cane within months. It got so bad that one MS specialist had me at an EDSS of 6.5 and told me it was most likely PPMS.

The other MS specialist he referred me to thought that I needed a power scooter and needed to file for disability pronto. He didn't agree with labeling me as PPMS so early on, though. As a last ditch effort, he put me on a schedule of pulsed IVSM every 3 months and started me on Baclofen and Provigil.

I slowly improved. I now do not use a cane (probably should just for distance and fatigue) and I am still an unusual case, but it is more obvious that I am definitely relapsing / remitting. Neuro #2 still labels me as atypical MS because of my presentation.

He refused to go along with Neuro #1 saying PPMS because I was too early into this to know. Exacerbations can last a long time and healing can be slow (despite averages that say weeks to months). For me to get to this point took 2 years. That is why he likes to observe a patient over years before saying it is PPMS.

I'm not saying things are rosy, but it is leaps and bounds from where I was in 2004. I've been holding my own for the last few years but have residual damage that he says is likely permanent.

I guess all I'm saying is to not let them label you as I think you are still early into this thing and don't let that label get into your head.