NEW NEURO APPT WAS YESTERDAY

[Waydwnsouth1]

After 4 years with the same Neuro I decided it was time for a change or at least a different look on things. So, I contacted the VA and I had a MRI the a scheduled appointment with a Neurologist at the VA Clinic in New Orleans.

The difference in the two Neuros was like night and day. My other Neuro was good and I liked him but learned just how little, or maybe shared with me, he knew about MS. For instance, we started talking about all the medications I have been on. Naturally it was question and answer session as to why I was on and off all these DMT's. Then came, what I feel, the bombshell. She, the new Neuro is going to start right back on Avonex, the very first DMT I was on. Why you may ask, because you can bet I did, I explained to her that I was taken off Avonex because I had a relapse while taking it. She asked, did you have an increased lesion load with he relapse? I had no idea. She said exactly.

She went on to explain that just because a patient has a relapse while taking a certain DMT doesn't mean that DMT is not working. Now an increased lesion load would mean the DMT is not working and it would time for a change. After she finished explaining her reasoning and we talked about all the other DMT's she laid out her plan. Plan? Did someone just say plan? I have never had a plan. I have just taken the medication prescribed like a good little boy and only hollered when something went wrong. MAN HAVE I BEEN NAIVE!! And I thought I was fairly well educated about MS. I have read, I have watched and I have listened yet still there is so much to learn even after 161/2 years, 12 years waiting for diagnosis and 4.5 years diagnosed.

The plan is I will start on Avonex, which the VA will supply, immediately. I will do blood work once a week for a month. She wants to monitor my WBC very closely since I have a major illness I am trying to recover from. Then I will have blood work once a month and all of this will last 6 months. At the end of the 6 months we will do another MRI and compare it to the one I had in August of this year. At that point we will assess things and make any adjustments if necessary.

I felt so good when me and my DW walked out of that office. My DW said she really liked the Neuro and was very comfortable with her and liked that she had a plan. I should have done this a long time ago but just couldn't pull the trigger. Now I am so happy I did. What a difference!!

I just had share my experience.

[Boymom123]

Excellent News!!!

I am so excited that you have a new neuro that you really seem to like and trust. Her plan of action sounds great. FIngers crossed that the Avonex keeps your lesions at bay

[JerryD]

It is very interesting that you were educating your neuro ! I am glad that you found a doctor who is aware of the 'ins and outs' of MS ! Good luck






T5ha

[mercadies25]

Going to a new neuro on Mon after almost 4yrs with, what I think was an awesome doc, because he moved to another state.

I have been very anxious about someone new. I feel a bit better after reading your post.

I hope my appointment goes as well.

[pennstater]

Glad to hear you really like your new neuro. I hope things work for you. Will keep the fingers crossed WBC remains OK.

Recently changed myself and was nervous as really liked my old neuro who retired. I like the new neuro and know he is on top of MS. Just will take a little to adjust to different personalities.

It is really important to have confidence in your neuro knowledge.

Good luck.

[4boysmom]

I found her comment about lesion load interesting! I first started on Avonex. After a year and an MRI, my neuro switched me to Rebif because I had more lesions! Did that for a year, but had problems with itching the entire time. But no new lesions on the yearly MRI. Changed to Tysabri! Did that for a year, and felt pretty good the entire time. I would sit and shake after the infusion for 1/2 hour, until the last 3 infusions. No shaking! Thought I'd finally gotten used to it or something.

Well on the yearly MRI, I had more lesions! Dang, nobody gets more lesions on Tysabri . Did the NABs test, and yes, I had developed antibodies to Ty, so no more of that! Switched to Copaxone, and have been on that med for 6+ years now.

I went to a presentation with a doctor from the Rocky Mountain MS Center. He said my neuro should have never taken me off of Avonex since I didn't have any new symptoms! He said the neuro was treating my MRI, and not me. So your neuro telling you that she would change drugs due to lesion load would be the same thing as just treating your MRI.

I thought you better hear this perspective also. Because of the way my neuro changed drugs so quickly, I am now very hesitant to try any of the new ones. I've been fairly stable on the copaxone, don't mind the injections, so I'll just keep staying the course.

I like her plan, though. She seems to care. Just don't let her make her decision solely on the MRI. Take your symptoms into consideration also. Having been on so many DMTs, I can tell you for me, the Copaxone has been the far easiest! No big long needles (Avonex) and I have enough fattiness to make the injections and dimples a non-problem!

[Waydwnsouth1]

Hello 4BoysMom,
I understand what you are saying that it sounds as if she is treating my MRI and not me. During the entire visit she never looked at the MRI, which I had on disc, nor did she read the radiologist report. Her center of focus was the DMT's I had been on and what was the reason I stopped taking them. I was averaging one new DMT a year.

When she found that I stopped Avonex because I had a flare, BUT not increased lesson load that's when she asked how I felt about going back to Avonex. It was at that point she asked about MRI's and read the radiologist report from my MRI in August.

I appreciate you pointing that out because I have been to Neuro's that the MRI was the "bible". If it wasn't on the MRI then you must not have it.