Multiple Sclerosis (MS) Support Group

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AusSue 09/09/2011

Well today I went into Royal melbourne (where I usually go) & saw a different Neurologist there. He was really good. Talked to us (David came with me), explained results of mri. Main thing he was interested in was a bulge in back between T1 & T2 & he compared it with old mri & no different which he was pleased with. Said just need to keep an eye on it.

He did the usual tests & noted them, esp when leg decided to start its kicking type motion when he tried one of the push me/pull me things, my leg spasms big time at that. He went through my page of notes, nodding & asked questions.

Then I asked about Gilenya, he explained the risks, asked if I had previously had heart, liver problems or chicken pox/shingles. Said yes to last but not to previous. Shingles can be a side effect - said not worried as had it several times already so at risk & gave us a book of information.
Has explained the process to go on it, need chest x-ray, blood tests, eye tests then see him in 2 months & discuss the results. So different to being told - not appropriate & that was all. I feel positive about him treating me which is a change, if it doesn't work out on Gilenya, at least I will have tried & can then see what other options are there.

So glad I took the risk of changing & seeing someone different, whether or not treatment options work in long term, at least been listened to better & not rushed. He apologised for being late, don't mind when spent time with us.

Wanted to share something good too. Doesn't change where I am at with ms or anything, just gives me hope that maybe this treatment might be open to me & if not something will be looked at.
Have a great weekend.

dxat59 09/09/2011

Just having a positive experience makes things seem better doesn't it? It's nice to have a Doctor who actually listens for a change. Glad everything went so well for you. My son and his wife live in Melbourne so a part of my heart is there as well. Gentle hugs.

deleted_user 09/09/2011

Glad to hear you had a good appt. with new neuro! Sometimes just having fresh eyes look at things can help a great deal.

Good luck to you friend!

oleblue 09/09/2011

So happy to hear good news as I always like to see some happy in our lives. I hope if you are able to start Gilyena and it does work well for you.
Thanks for Sharing
Dave

deleted_user 09/09/2011

I agree =) After some very awesome pep talking per this site..I went and saw my Neuro ( 2nd visit, 2nd Neuro) this am. No brain lesions. Lots of funky symptoms and Pain from HELL lately. 14 months ago I was living at the YMCA and putting on a suit every day. Anywhoo. I lost it today. Joel took the day off so I didn't have to drive. I sat in the little room, then laid down. And cried. I cried because I'm tired. Tired of the drive. Tired of gas being 4 bucks a gallon. Tired of being grumpy and hurting. Pissed because I didn't have it in me to get dolled up to go and looked like crap. Tired of setting in the damn offices and " giving the list of symptoms" or " how it started" You know how it gos. He comes in, with his old ( like it should be in a display case old) bag and sets down. He's like a skinny little santa =) And I go on. Pretty proud as I thought I'd be a sobbing mess. And he's so calm. Answers every question. Listens to me tell of my concerns regarding narcotics. Explains a lot in regards to PT, anti inflammatories, etc. Even the story behind his old medical bag. I say, " boy I bet you get to play therapist all day long" as I feel like I rambled forever. And as honest as can be he says " it's my pleasure to be able to help." My point obviously is it's an amazing feeling to get the right Doc =) And he ordered an MRI for the remainder of my spine as well so that was re assuring also. Put me on low dose steroid ( also explained it was VERY LOW and just a taper till the MRI is back) and that IS ok with me as I KNOW I will be pain free..if only for a short while =)

MsRee 09/09/2011

Thats great that you went to this Dr and you can feel like he cared and wasn't just brushing you off. Finding a good Dr is hard and I'm glad you took the time to actually change from who you were seeing so you could get the treatment you need. Keep hope alive! :)

lchoppel 09/09/2011

A good doctor makes all the difference in the world as to how your MS treats you. Best wishes to you for continued success with your new doc.

AusSue 09/09/2011

Thanks heaps for all your responses. It sure is good that this neurologist took time to go through things with me. Next time he will have the results of all the tests I have to have (slept in so didn't go around & get blood test done today) & will go from there. There is a queue to get on the gilenya if I am ok for it too as it has just been approved for our pbs (government funded so cheaper medications).
I am thinking positive as was on it when it was a drug trial here & it helped me then too.
Will keep all updated.

deleted_user 09/10/2011

I had a bad visit with my neuro of 11 yrs recently. He glossed over some of my concerns and totally ignored others; this was the first time I received this treatment (or lack there of). I wrote a letter expressing my concern. The only response I received was an email to take an online survey. Fine, I did so and at the end when it asked if I wanted someone from the clinic to contact me, I said yes.

This was a month and a half ago. I still haven't heard anything. I have an appt with a new neuro later this month.

I don't understand how a good, interactive doctor suddenly seems to care less. I was hoping that I just caught him on a bad day (hey, we all have a bad day now & then, right?). That's why I wrote the letter. But I've heard nothing back.

It kinds of makes me wonder in my case of MS isn't exciting enough or adds enough to his positive statistics.

I hope my experience with the new neuro goes as well as yours!

AusSue 09/11/2011

Oakenwood, I am sorry that your visit to neuro was so bad. Gee to have had the same one for 11 years is good in itself. If the new one is at the same clinic, (as mine was) I just said I wanted a 2nd opinion & different look on everything. That way if the 2nd neuro was no better I hadn't shut the door on the previous one too.
Sorry they didn't contact you back too. That is so common unfortunately, I speak to the nurse when I call & have built up a good rapport with her which helps heaps. She even tells me when she is going on hols & we talk about it & other things.

I hope that your visit with the 2nd neuro visit goes well & that he listens to you well. Let us know please.

deleted_user 09/13/2011

The feeling you get with a great dr does make all the difference. My first neuro told me that I had optic neuritis and that if I lost 10 pounds it would all go away. Does he not know the risks of telling a woman (who is not overweight) that she needs to lose weight?!?! LOL Then I went to my new neuro who listened and drew pictures and talked to me like I was a human being. It was great! He took one look at my symptoms and my MRI and said "yes, you have MS, now let's start you on a anti-progression drug"! All on my first visit! I have been on Copaxone for 7 weeks with no flair ups and could not be better! Great dr.'s are out there it's just a fight to find them. Glad you found one!

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