Considering an MS specialist

[Deb61]

Here's my PM to Shell about my ordeal.  Thanks ahead of time if you decide to read this.  

Hi Shell, I do so appreciate your concern.  You are so kind to offer digging into finding someone in my area.  I did a little digging, too, and found a good MS specialist; however, I have no idea how busy he would be and everyone else's experience with him.  He's at UT Southwestern--Dr. Elliot Frohman-- and he's done lots of research in MS.  He's the head of the department.  I don't know if I would actually be seeing him, his PA, or his interns.  I was hoping someone would tell me a doctor at UT Southwestern and give me their experiences.

Yes, I'm having somethings going awry.  I'm still thinking I could have handled things differently by being more prepared.  Here's my thinking (I know it's long that's why I didn't want to posted anything).  Plus, I'm still thinking about seeing my old neurologist and all of this stuff sounds scary and bad.  I don't want to feel pressured into leaving him.  I've seen him for four years and we do have a rapport.  However, lately I've been having to reconsider seeing an MS specialist (he's a regular neuro).  

I had a really bad experience this last month with a drug to treat latent TB (INH) because he wants me to start Gilenya.  About a week into taking the INH I started getting a vibratory sensation like I was riding on a stage coach and the old head tremor back.  Then, my arm started going out.  There were a couple of occasions where I couldn't lift my arm--it was like it was paralyzed.  I called my neurologist and he told me to stop the INH.  In about a week, the vibratory sensation stopped and I didn't have anymore of the paralysis events with my right arm; however, my right arm is left feeling heavy.  When my neuro a couple of days ago he quipped that this INH is toxic to the central nervous system.  

Okay, so here are my problems with this whole event:

1)  How come he didn't refer me to an infectious disease doctor if he knew all this (being toxic to the nervous system)?  The way he spoke was that I was going to be taking Gilenya with INH.  How come he didn't let me know of the potential side effects?

2) I am finding out that Gilenya lowers the heart rate and taking beta blockers throws up a red flag.  I'm taking a beta blocker.  He hasn't mentioned anything about talking with my GP about changing blood pressure medicines.

3)  I have to do the research ahead of time.  I don't have a medical degree and don't want to have to bring up this stuff.  What if I miss something to tell him?  I could have potentially given everyone TB if I didn't know anything about Gilenya and how it works.  

4)  He has never gone over this MRI with me.  In fact when he had the nurses pull up the report and print it, he misread the interpretations because he was in a hurry.  I even thought it was a different report.  His eye caught "no changes".  When I got home, I read the report again.  It said, that one particular lesion had no changes.  The first sentence under impressions was something about several small foci . . .  An in the findings it talks about these knew additional lesions.  What gets me was that he was the person who read the report two visits ago and told me that there were new lesions and the Copaxone was failing.  I even asked him if I really did need to start a new drug.  He said I did.  This last visit, he read the report so quickly that he missed everything it said about these new lesions.

This all sounds bad, I know.  I still want to keep the door open to see him if my experience with the MS neuro isn't good (if I do decide to see the rock star MS neuro).  

I'm sorry, Shell, for the super long explaination.  I really am, though, on the fence.  My husband thinks I shouldn't see this MS specialist.  He's afraid of me going through Limboland, I guess.  My sister, who also sees the same neurologist, says I should see this MS specialist for a second opinion.  


I forgot to mention that I do now have a referral to see an infectious disease doctor.  I will go ahead and pursue this.  Maybe I won't have to take anything for the latent TB--that would be nice!

Deb

[Deb61]

Thank you all for your comments.  I am sorry about the delay in getting back with you.  My computer went completely out and actually had to be replaced.  Not good timing with Christmas and paying an enormous deductible for the Copaxone (this is another story). The computer was about seven to ten years old, so I don't feel so bad about it going out--just the timing.

I am feeling so much better not being on the INH for a prophylaxis to prevent active TB in the event that I go on a DMD that lowers my immune system.  To answer your question, Sarah, I have inactive TB.  I've been exposed to TB in the past (positive Mantoux test).  Most people that are not immune system compremised will not get active that kills.  1 in 10 people who have been exposed will eventually develop the active form of the disease and be contagious; however, if the immune system is lowered, like in HIV/AIDS or when taking a drug that lowers the immune system, the chances are much greater in developing the disease.  Besides the risks for myself, I'm a teacher and do not want to expose children.  

So to go on Gilenya, I am taking a huge risk in developing the active form of TB.  Latent TB is actually not all that uncommon (even in the US), so I'm really surprised that in the literature for Gilenya, they don't recommend testing for TB.  I know when I listen to ads for medicines to treat RA, I hear something about TB in the ad.  Okay, I'm off track . . .

I am doing much, much better.  I think I'm going to go ahead and see the infectious disease doctor and get my records together.  I've not contacted the neuro in Dallas for an appointment, yet.  I really, really like your recommendations for seeing the specialist once a year and the regular neuro in between.  That is a great idea!  I'm still on the fence, though.  I'm giving it lots of thought.  

Shell, Deb, and Sarah thanks again.  I do so appreciate your sound advice . . .

[debgen]

I see an. MS specialist once a year and my regular near in between. They share info with each other. I feel the specialist was much better at explaining the pros and cons of all the different DMD's He started me on Copaxone and it has worked well for me. I still like my local near because it is much esker to see him on a regular basis. Good luck to you!
Xxxxx Deb

[sllowe]

Briefly, because I'm knee deep in cooking - I'd do it too! I can relate - it's not that you want to leave your regular, afterall, he's willing to try something different, but a specialist is just well, a specialist, and sees so many more MSers than a regular neuro - I have more to say, but wanted you to know that I read this, and feel you don't have to jump ship necessarily from your regular.

Many MSers see their specialist once a year, and then the regular inbetween times!

ttys Deb - feel you are doing the right thing...

[SarahL2491]

Perhaps you should make an "lets just talk" appt with your regular neuro and basically point out your problems with how he has handled your case.

Maybe he will "slow down" and be more cautious.  

You mentioned latent TB.  Are you saying you have it?  Have you been tested?  

I'd give him a chance to explain before you jump ship, since you seem to have a good relationship with him.  Then if you are not happy with his explanations, then you can look elsewhere.  It took me 6 months to get an appointment when I jumped ship...

Just be calm and grown up and point out the problems you just pointed out to us and give him a chance to reply.......just sayin...

have a good holiday!