Devestated

[debgen]

I am totally devastated.
As many of you know I have had a very rough year. Since beginning Copaxone 18 months ago I have had 2 long, debilitating relapses. I have been increasingly becoming more disabled, unable to work, walk without a cane on good days or without a Rollator on not so good days. I met with my neuro last month and we both agreed that the Copaxone was obviously not working for me. She wanted to start me on Tysebari. Unfortunately I just received the  news that I tested positive for the JC virus, which of course means no Tysebari for me :(
Honestly I had a feeling I would be positive for JC because my MS started 30 years ago with ADEM, which is a rare  virus to the CNS.

I have been told by 2 neuros that I have atypical RRMS. They seem to down play the ADEM because I honestly don't think they know much about it. I do know that most drugs they have put me on (Copaxone, Ampyra, Baclafen, Zanaflex,etc.) have not worked for me.

I am very frustrated an depressed. (confession: I can't stop crying) I go back to the neuro on Thursday to review my MRI from last Monday and review my DMD options.

I was wondering if anyone knows of a hospital or center which specializes in MS and other CNS disorders.
I would really like to explore what the hell is going on in my body.

Thank you all for letting me get this out. I truly feel this community is the best!

(((hugs)))
Deb

[Lulu54]

Scared is very normal and one of the best weapons for fear is knowledge.  You are doing the right thing in asking for suggestions and learning what you can  so you can have a good conversation with your doctor when you meet.

I'll hope that the suggestions are good ones that you are comfortable with.  Hang in there - it does get better.

[SarahL2491]

GROUP HUG..........................

[saucygrl]

You're allowed to whine with new like you got!  Being scared is also very normal.  Just remember we're here for you!!

Hugs!
Chris

[debgen]

I wanted to thank everyone for your support and helpful responses. :)

I am sorry to have sounded so negative and as many of you pointed out I certainly have many other DMD choices. I am looking forward to discussing the next step at my neuro appt. on Thursday.

I also hope that my feeling of gloom and doom will pass once she explains my crappy MRI results. I am really scared.

Thanks again go letting me whine and giving me support

xxxxxxxxx
Deb

[saucygrl]

Deb,

I'm sorry you're going through this right now. Sometimes a good cry really helps though!  I have a friend who is JCV+ and he was on Tysabri for two years.  His neuro wouldn't let him go beyond that because the chances of getting PML go up slightly after that.  He did really well on it and it might buy you some time until BG-13 is available.  Definitely something to discuss with your doctor!

Keep your chin up!  
Chris

[HVAC]

I for one have been on many different medications to treat symptoms. It is trial and error. I have tried well over 50. Somethings work for awhile and then do not. Others have side effects I can't endure. Sometimes my symptoms even changing. In my case I had medical problems that were not MS at all on top of the MS and once I treated them things got better. Dealing with this disease is frustrating. Sometimes they can only address one problem at a time and we have multiple problems. This can make the process of symptoms management slow. I kinda thought I would be diagnosed and they would fix it. It did not work that way. You should push for care but understand the medical system is slow. I have great MS Specialist but he can do very little for me. This is something I recognize there are plenty of DMDs and more coming on the market.

Alex

[wiggles94]

Hi and I am so sorry you are having trouble.

I have seen a neuro at the MS center at the Univ of Rochester - Strong Memorial Hospital.  I see you are from Syr.  I am as well.

Let me know if you would like his name (he is AWESOME) and I will private message you with it.
Carol

[twopack]

I'm so sorry your path is once again being made more difficult by obstacles and detours.  I'm trying to find some references I had about ADEM and MS.  I'll get back to you.

In the mean time, there are other DMD choices as the others have pointed out.  I'm sorry but I don't remember if there was a specific reason you didn't want to persue the use of an interferon product.  I don't know if IVIG is a possibility or not.

You also could decide you are OK with the added risk of using Tysabri for a while even though you are JC positive (it is still only a very small risk).  It will depend on how much risk both you and your doctor are comfortable taking.

I hope someone here comes up with the name of a great center for diagnosing and treating a variety of degenerative CNS diseases.

[jenphilly]

Deb,

I am so sorry you're having such a tough time with things...  think we need a group hug for you!  

There are several other DMDs to try...  rebif, avonex, interferon...  BG12 should be getting approval very soon.  Tho Gilenya has some questionable press lately, it might be a consideration too, just carefully weigh good and bad.  

NY has a top rated MS research center...  here is the website....  not sure how far from you in syracuse it might be, but even if you need to plan for a few days...   http://msrcny.org/    I know they have been working toward accrediation for stem cell treatments too (using your own fat cells, not fetal).    I have never checked into what diagnostics they offer, but great resource of information!

Winthrop is also in NY, they would rank right up there with Hopkins...   Here is a website for them too...  http://www.winthrop.org/departments/institutes/neurosciences/neurology/Areas-of-Expertise/#mstc

Keep us posted....  and if you want help with searching the internet for info or options, just let me know, more then happy to dig up info for you!

Hugs,

Jen

[Sidesteps]

In looking at the medications you mentioned it seems the only DMD you have used it Copaxone. The other medications are used to treat symptoms associated (spasticity, pain)

There are several other DMDs besides Tysabri and Copaxone. I am taking Avonex and I know there is also Betaseron and BG12 is coming out shortly. Have you tried the other DMDs? It sounds like those would be options I'd consider as well.

[kwarendorf]

Hi Deb-

I don't think that testing JCV+ completely rules out Tysabri. It seems that there are lots of JCV+ people who have been on Tysabri for years.

Kyle