No longer in limboland...

Hi All,

Went back to my neuro on Friday. He dx me with MS for certain.

I had a negative LP and can't have an MRI (I have an interstim implant for my neurogenic bladder) but I have been symptomatic since 97 with neuro damage and involvement. He said I met the clinical criteria.

He does not plan to start me on DMD's but will treat the next relapse sooner. He said he did not want me to suffer for 6 months again (he is a new doc for me).

Like many others, I am happy to have an answer so I can deal with this.

Wobbler

[Redwings]

It's good that you finally have a diagnosis. How does your neurologist explain his rationale to not start you on a DMD when the consensus among MS professionals is that, the sooner a DMD is started, the better the long-term outcome? Is the plan just to keep letting you have relapses and then treat them by bombarding you with steroids every time?

[mjan]

How do you feel having an answer?? I am glad you have answer and a name to the "monster"..yes?

Keep us informed as how this is going ok hon?

Warmly, Jan

[zuzu20]

I had to laugh at your name i considered using that when I started here. I am glad for you but i gues it's kind of bitter sweet. bitter that you have ms but sweet that you can finally have some answers. Like me its been hard to dx.. keep us posted.

[objan]

Hey Wobbler, I am glad you are getting some answers, but if you do any research on the MS association site, you would find that the best time to start DMD is at diagnosis and before you have another relapse!! The DMD may keep you from having another relapse and if you do maybe not so bad. Is your neuro an MS specialist, because the recommendations are that as soon as you know you have MS......be aggressive and start the DMD to fight it !!

There are those who choose NOT to start DMD, but that is their choice. If you choose that fine, but don't let the doc tell you not to start the meds. They may hold the MS at bay and keep you from relapsing. If you relapse again, the damage is already done. Just a thought. Do some research on your own and make that decision for yourself.

[gomer]

Oh WOBBLER..........CONGRATS on the Dx!

Ya got what ya got... (same here), not nice comfey news but so much better that having problems and no answers, no direction. I STILL have not started an DMD meds yet, I was also told the sooner the better, but the VA is a bit SLOooooooo! Only took them over 2 decades to even decide to check out my "adamant" complaints something ELSE was wrong.

I will be going back to neuro-clinic in 2 weeks, so MAYBE, then we will get some direction and MAYBE the optinion of FINALLY fighting the MonSter.

Q 4 U Wobbler (yep I also LUV yer nome) When the did the LP did the report note if your MBP was elivated? Mylien Basic Protien is also an indicator for MS. Mine was elivated at 1.4 with a lab normal range of 0.0 to 1.0, so nearly one and a half times the upper normal limit on my specific test.

Now Wobbler....Yer ORDERS are to report to Rest Area 51 starting with the 4/18 thread. We need all the newbies (Dx wise) over there. If I don't see ya I will have to hop on my GoGo an chase ya down! I will bring Crystal (my trusty cane) to deal with ya if need be! maybe we can have a good cane fight.........lol!

GOMER another wobbler when walks

[ShakespeareMama]

Congratulations on leaving Limbo Land. I'm sure it sucks having a disease written in stone but it's a name that comes with treatment.

I hope you get the best treatment, now, and can stop any progression.

I wish you well!

Thanks Guys,

Doc confused me too with wanting to wait on the meds but honestly, he seems concerned that he heas only seen me during this relapse and though he dx me, I think he wants to wait and see what happends next.

This is not what he said but it is what I read between the lines.

He told me to come in as soon as I have my next sx so he can hit them early.

I have had this since 97, I have had 5 relapse since Jan 07

For now, my brain can rest (I am not crazy). I do have damage already and even some from this relapse but I think he is just being cautious on both sides.

Thanks for all the kind words.

Gomer, I will do as "ordered". For now, my cane is in my trunk, so glad to give it a rest.

Wobbler

[Snowdrop]

What a relief to know what it is for certain

Sounds like a reasonable doc too

[MSDO106964]

Wobbler: I'm happy you finally got a dx. It seems strange to congratulate someone for that but for anybody who has been in limbo, such as myself, then having an answer, a definitive one, has got to be a relief. I am going tomorrow for an evaluation and later this week the dreaded EMG and I am PRAYING for an answer. Most people can deal with things.....it's the ambiguity that makes it the most difficult. Bring a dx on and we'll deal with it, right?

[gomer]

Now Wobbler.!.!.!. What the #@&* is yer CANE doing in a stowage area? ............lol I keep a SPARE in my trunk. Heck I do not get from house to car w/o mine.

I am keeping my <@>'s on ya, so ya better wobble over ta Rest Area 51........

MSD###########..ya got that spot on! The HARDEST thing for the human mind to deal with is the UNKNOWN! (I learned that one from the '82 cancer problem)

Now Good luck wobbler

GOMER

[minivanmama]

Wobbler - So good to know that you have a DX. I know that you are relived to have a answers.

Enjoy the mainland and let us know how you are doing.
(((hugs)))