Anyone love their neurologist in Phoenix... - My MSAA Community

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Anyone love their neurologist in Phoenix, AZ?

Cwacker profile image
19 Replies

Hi, I'm looking for a new neurologist in Phoenix. I feel its time to switch specialist because he doesn't seem to "hear" me. I've been told one too many times "its not ms". My dizzy spells , breathing problems were supposedly due to other issues. I'm frankly tired of being told that, having gone to the specialists for these issues and after lengthy and expensive tests told its my ms. Now my legs are beginning to give me more problems for over a week , numbness, weakness, which is affecting my left hip and now I'm getting concerned. My original neuro told me I've progressed to secondary progressive ms 2 years ago. Was put on a trial drug till last March and since the company finished that part of the trial I was not chosen to continue the long term phase of the trial so I haven't gone on any meds or seen any neuros since. Sooo, that being said I'm over my "done with doctors" phase and am on the search for one that others would recommend

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Cwacker profile image
Cwacker
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19 Replies
Sarah_Ann profile image
Sarah_Ann

I see Dr. Gitt...not the best bedside manner in some ways....sounds similar to what you said about being told certain symptoms are not MS. He is very businesslike. But his clinic tends to be pretty thorough and gets things done. He prefers to put his patients on oral medications or Tysabri. Even though I was just diagnosed he did a push for Tysabri. But that could be because my twin sister was diagnosed 6 years ago and she has pretty bad side effects to most of the other drugs. Even though my twin doesn't like Dr. Gitts bedside manner, she is planning to switch to him because no other neurologist has recommended Tysabri and she is sick of the side effects of all the other drugs. Dr. Gitts office will also go above and beyond with squeezing you in when you are having difficulties. They were awesome when I lost my insurance and helped get me set up for the free drug program. Not sure if that helps....

Cwacker profile image
Cwacker in reply to Sarah_Ann

Thank you, that is who I see now, I agree with your comment, but insisting my problems are not related to MS is pushing me away. As most of us I've gone into so much debt seeing other specialists and tests unnecessarily, I've felt like a hypochondriac,,,

Sarah_Ann profile image
Sarah_Ann in reply to Cwacker

I didn't want to assume that is who you see but I had a feeling. Sorry I couldn't help... I am at a loss of anyone else as well. My twin sister has been seeing a neurologist for a couple years but he isn't a specialist and it was fine when she wasn't feeling symptoms but now that she is, she doesn't know where to go also. From everything I had seen Dr. Gitt is the best we have out here.... Every time I see him I feel like like I will become a lab study being my sister and I both have MS....

Cwacker profile image
Cwacker in reply to Sarah_Ann

To be honest, that's what I was wondering when I was told I was secondary progressive but could start a trial drug for it. Is that bad to say???? But I didn't have my current issues as long as this time while on it, if I was on it (double blind study) coincidence??? Who knows,,,, only Novartis knows... I do appreciate your reply, thank you

Sarah_Ann profile image
Sarah_Ann in reply to Cwacker

As of yesterday, I am at a loss of medications now also. My twin sister has already tried most of them and now it seems that I will probably have to stop Tysabri. I got my second infusion and I had an allergic reaction to the meds...so they believe my body is creating antibodies against it so there will be no point in me continuing the treatment. I will know more after the antibody blood test comes back. Have you tried any of the other Neurologists in the clinic Dr. Gitt is in? I didn't think they were specialists in MS but then when I was on the phone with them today the person who answered the phone told me they were...not sure if I believe that.

Cwacker profile image
Cwacker in reply to Sarah_Ann

Yikes!! I haven't tried any other drs in gitts office. I don't know if you saw my post from earlier but I have an appt in October for a MS specialist in Barrows. You have to "apply" to be seen at Barrows, I did last year and had an appt set for January but couldn't afford it. finally paid off my hospital bill a couple of months ago and since I've been having leg issues decided it's time. I hope there's something out there that you can tolerate ~

Sarah_Ann profile image
Sarah_Ann in reply to Cwacker

I hope that everything goes well with the new doctor!

We will see what happens at my next appointment with Dr. Gitt. He told me that my back pain wasn't from MS... but I think it is weird that it only showed up when I was having a flare up and went away as soon as I got on Steriods. I was wondering if the pain was from the lesions in my back. I know he is probably right but it was his tone. Also he keeps insisting that my body won't react the same as my twin's to the medication. While I understand that is how normal people are, my sister and I are not normal. We have all the same allergies and take the same dosage of thyroid meds even though it is not a normal dosage. I guess I will have to try to them all to determine which one of us are right. But I would like to think I know my body better than he does.

Ashirva profile image
Ashirva

I'm afraid I can't help you with neurologists in the Phoenix area, but I could tell you some horror stories about neurologists in Tucson! Actually, the first two neurologists I had there (both women) were EXCELLENT, but they've both moved from the area. The third one I had was the horror story. I believe he's retired now.

One thing's for sure... if you're having problems and symptoms, you definitely need to be on some kind of medication - sooner rather than later! Is there a referral service you can call to get suggestions of neurologists? I believe most areas or states have a doctor referral service. Also, you could contact the local MS Society and talk to them. That's how I found the (handicapped) lawyer who helped me get on disability.

If you contact the company that makes the medication trials you took part in, they may be able to get you on that medication and help with payment.

Good luck with finding a dr. and let us know what you manage to find, okay? Take care!

Anne :-)

Cwacker profile image
Cwacker in reply to Ashirva

Thank you Anne, I'm going to do further research on finding a nuerologist here. I do appreciate your help! The leg is still funny, but my hip has improved some. Might be because I took my diclofenac a couple of times. My body is so very sensitive on meds, they all put me out or make me ill, so I take them sparingly. The only med that I was on (or not? Double blind trial drug) was the siponimod and I tolerated it well, but it isn't on the market yet. I haven't had any increased problems while on that, they stopped that part of the trial last March. The research I've done for secondary progressive MS showed a chemo type drug. I'm definitely not ready for that and I don't want to go into it with my current neuro.

Fancy1959 profile image
Fancy1959

Cwacker, it is Fancy1959 and I would love to welcome you this wonderful chat room. I cannot help you with any neurologist in Arizona since I live almost all the way across the country in Versailles Kentucky. Keep asking around because someone is bound to come up with viable name for you. Have you spoken to your family doctor? Sometimes they can recommend good neurologist to you. You need to find another neurologist the back on the 3rd. I also have secondary Progressive MS. As I understand it there is a new drug therapy coming out early next year that is focused on secondary progressive MS for the first time. Then there are also the stem cell therapy that is showing extreme amount of promise of stopping or reversing MS. So, MS family. It's part of our family I hope you will join us and our fight against MS can become an MS warrior with us. We Warriors never give up and we never give in. Remember together we are stronger. Fight on MS Warrior, fight on!

agapepilgrim profile image
agapepilgrim in reply to Fancy1959

Fancy1959 hi, may I ask who is your neurologist? I live in Lawrenceburg and still trying to find a neurologist I can fill secure and comfortable and one who cares about my future health. I have been to 3 and we just don't communicate!

Cwacker profile image
Cwacker

Thank you fancy1959, I appreciate that. I spent time researching for neuros and I think I've found one that has good ms patient reviews~

Ashirva profile image
Ashirva in reply to Cwacker

YAAAAY! Glad you found a neurologist - hope it works out! Let us know!

Anne :-)

Fancy1959 profile image
Fancy1959 in reply to Cwacker

Please keep us in the loop Cwacker. Do not let the cost of treatment keep you from using the treatment have your MS Office contact the pharmaceutical rep that handles that drug. Normally they will offer some type of co-payment Assistance or completely cover the co-pay if you require it to stay on their treatment. They wants success stories about their treatments not failures and getting off the drug and progressing in your disease would definitely be a failure for them. You may also contact your local MS Society for assistance finding a neurologist in your area that are rated highly. I'm sure they would be in the loop. Again please keep us in the loop and let us know how your treatment and your physician search is going. Together we are stronger! Don't ever give up MS Warrior, fight on!

Cwacker profile image
Cwacker

Thank you all for your support and suggestions. I now have an appt with a Dr in Barrows Institute Oct 25. He's fairly new (in dept 1 year, but heads the MS dept ) and I don't know too much about him..... The Dr that had great patient reviews that I had hoped to see moved out of state 3 years ago! Obviously the sites on the Internet haven't been updated 😯 I'll let you know how it goes...

I'm in the process of transferring my care as well. The best advice so far is to be seen at an MS center! Not just by any neurologist. I'm hoping my "new" neurologist "gets it." I would just suggest not to settle & find a physician who understands your symptoms, your personality, and your expectations! Best wishes!!

Cwacker profile image
Cwacker in reply to

Thanks DeeAma, that is a good suggestion, I'll call the ms Society here in Phoenix and ask about a MS center, I didn't think about that. Seeing and choosing new drs is expensive at $250-600 for the 1st visit. And you don't know till you're seen. Sorry for ranting, just a little frustrated ~

Im with you Cwacker, just remember we get one life to live, and they are our investment.

RoyceNewton profile image
RoyceNewton

Phoenix Neurological, or neurology. Dr Tamm has been my neuro for ages, Dr Levine is my wife's, Dr Hendin is good hid Dr? sorry I forget her nsmrbut they are all very good and know ms well.

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