Referral to neuro at UW Hospital

[jenandherboys]

After almost 8 months with my local neuro, he has decided to refer me to University of Wisconsin Hospital neurology dept for evaluation for MS. This follows my latest relapse (the 5th in 11 months) for which I conceded to a 2nd LP in hopes that it would finally show some paraclinical evidence to support a MS dx. To my neuro's amazement-and mine-everything was normal! He even said that he fully expected it to be positive (for O-bands)!

So now he has added tizanidine to my current baclofen therapy to treat my constant spasticity and spasms, and I get to wait until November 4 to see the new neuro in Madison, WI. Also wondering if anyone has been seen at the UW neurology dept or heard anything about Dr. Suzanne Seeger...she is supposed to specialize in neuro diagnostics, I guess.

Has anyone had any luck getting an appt moved up-I just can't stand the thought of waiting so long before taking the next step toward some kind of diagnosis-not to mention that my $6000 deductable will start over again in January!
I have already asked to be put on a cancellation list so they will notify me if an earlier appt opens up, but I live about 2 hours away so I'm not sure how that will pan out.

Sorry for the long post, just feeling frustrated and tired (and at least a little self-pity). Just realizing that I've had more days "ill" than "well" in the last 11 months and getting worried that this trend may continue or worsen if unchecked. Thanks for any advice you all might have.

Jen

[jenandherboys]

Thanks again to everyone for the support and advice, it really helps to have somebody "on my side", and to have all of your collective experiences to learn from.  I'll keep you posted if anything changes...

Jen

[RedFlame]

I think that is too long to wait.  I don't know what your situation is but alot of damage can occur in that amount of time.  Can you go back to your local neuro and tell him that this is too long of a wait?  Perhaps he can have some other tests done so that when you do go to UofW you will have everything possible so that they can diagnose you.

Perhaps there is another neuro you can see while waiting for this special doc.  

I think that being pro-active and concerned about your illness is a sign of strength.  It is a healthy behavior.

take care      Red

[Lulu54]

Hi Jen,

5 relapses in 11 months sounds to me more like one continuus relapse than several individual ones.  But that's just my guess- you already know I am not the medical expert around here.

Even though you are already on the cancellation list, it would be ok to call them again.  This time, ask if it is ok to call them regularly to check about cancellations because you would like to get more work done during this year's insurance coverage.  Be very clear to them about trying to get the costs into this year before you have to start over again. You might be surprised how helpful that can be if you explain your situation, rather than just appearing to be impatient about seeing the new doc.

don't worry about the frustration in your post- that is what we are here for.  We're good listeners and you have lots of reasons to be tired, frustrated and looking for validation.

hang in there!
Lulu

[amos13]

I, too, went to UW Hospital for a 2nd opinion, but not to your doctor.  I waited 3 months to get in, which I agree with you, is hard to wait!!!  My doctor did some more blood work and an LP and all came up negative.  So he gave me no answers and just keeps telling me "come back in 6 months."  Well, that's not good enough!  Plus UW is out of network for me...

So I have now seen an MS specialist at University of Chicago Medical Center and feel I finally found someone who is going to work hard to find out what's going on.  (I actually got in 3 days after I called because he had a cancellation, otherwise it would have been a 4 month wait!  Talk about meant to be!)  He says my symptoms are consistent with progressive MS, but since my diagnostics aren't supporting it (I only have 2 major lesions on my brain), he thinks I might have Sjogren's, a connective tissue autoimmune disease, and I will be going through some diagnostic testing for this in the very near future.

So I guess what I'm trying to say is, hang in there.  You definitely have to be your own advocate and keep pushing for answers.  I could have just said OK to coming back in 6 months, but like I said, that's not good enough!  Hopefully you'll find some answers soon!

Good luck & take care,
Amy

[Erin0313]

Jen,

   You are entitled to a little self pity so don't beat yourself up for it! I'm glad that he is referring you so that you may finally get answers and treatment but I know that wait feels like forever.

  Getting yourself on the cancellation list was the best idea - good for you!! You would be surprised how many people cancel their appts. Some of their patients probably go on a regular basis and will cancel if some event comes up or they don't have a ride etc. so don't be surprised if you get that call.

I hope the tizanidine helps your symptoms until then

Hugs,
Erin :)

[jenandherboys]

Thanks for the support and encouragement! It really helps to get some validation on occasion.  I'll remember to check back more often for advice and support!

Thanks again, and take care!

Jen

[Inny2009]

I am so sorry jen that you are having to go through this! I hate to say this as much as it is a pain (literally and figuritively) to wait but sometimes you have to. If you can get an earlier appointment then that would be awesome and give it your all to make it!

I understand your frusteration and self pity and tiredness. And to be honest, I said those exact words of realizing im having more ill days than well days and so on and so forth. That is why I ended up pushing for an earlier appointment to my hospital nuerologist as well. Your not alone and you are so normal for having those feelings and have every right to!

I hope it pans out for you the way you need and want it to. Im sorry if i dont have to much advice to give but id thought Id let you know you arent alone and its ok to feel what your feeling. You have my support and if you need me, just holler through a pm.

Hugs to you,
Inny