Any Experiences With Dr. William Cheshire From The Mayo Clinic?

[jodielynn]

Hi everyone,

I was just wondering if any of you have had any experiences with Dr Cheshire from the mayo clinic. I was thinking of seeing him. I live in Massachusetts, but willing to travel. I have seen dr grubb,he is great but it is so hard to follow up with him. I still haven't gotten anywhere in my treatment. I have had alot of test,told have autonomic dysfunction in 2002. I have two little boys and want to be a better mom to them. I am currently on procrit,but still passout almost daily. Any suggestions or input on the mayo clinic would be appreciated.

Being on this forum makes me feel not so alone. Thank you all for your stories and knowledge.

Thank you

jodielynn

[lieze]

Saying a prayer for you today jodielynn.

Keep looking for answers.

I hope things improve for you.

[jodielynn]

Thank you so much for your kind words Lieze.

[sisblostg]

I did not see that specific dr at the Mayo clinic. I made the long trip to the Mayo last year. It was exhustating, expensive, and I worried about my kids the whole time. I was happy to be able to have a dr that understood my condition as well as many other department I saw. I got lots of testing and recommendations but without a good dcotor to follow me locally, how worthwhile is it? I think if I had been able to stay for 3-4 weeks it would have been more helpful but since you can't choose a time (like when your kids or out of school or when it is convinent to find a travel partner to be gone that long) I could not stay more then 1 week. In one week they did a good autonomic and cardio workup. If you feel like you need more specialized testing then I would go to Mayo but if you are confident in your dx and have seen Dr grubb I don't know if I would spend the time and engery and cost.

My Mayo dr was happy to talk to and educate a local dr on pots and autonomic issues but there have been no takers. Does your insurance have an advocate service? My does , but since I live in a more rural area the dr selection is limited. I now see a pulmonologist as a primary care because he was the only dr that had see OI before. I would think since New england has so many dr's and if you get an insurnace advocate to do the calling for you to see if any dr had any autonomic knowledge or is willing to really learn. I had called around but I never thought of going to specialists like pulmonology(I have also heard that now high risk OB/gyn's are getting more pots eductaion) for autonomic conditions. I would just hate to see you get worn out traveling and have a positive experience with a Mayo dr and then come home and have no local support.

[Godsgal]

Hi....I would not travel that far to see him only. I just saw him a few weeks ago. I liked him, nice guy, personally reviewed my 2 inch thick stack of records, page by page. That I did consider to be impressive. Good bedside manner. He did a lot of extensive testing on me which was beneficial b/c I had not had it done yet. But to travel to him alone I definitely wouldn't do it. At the end of our appt. he just stared at me and smiled like I was a medical anomaly. And literally said nothing. Didn't love that. BUT, he tested me for every single antibody known to mankind (what the other doc there told me) so I was satisfied with that. The POTS doc there was great....Dr. Vankatachalam. LOVED HIM> HIGHLY RECOMMEND. I have seen reviews on the autonomic doctor at Mayo Rochester. Perhaps that would be a better trip for you. But I agree with the other writer.....the Mayo is exhausting and expensive. It was worth it for me to go but I came from South Florida to get there so not that bad of a trip for me. I too have two little ones and want to be a better mom for them. I loved Dr. Wang in Rheumatology. He helped me out a lot as well. I would highly recommend the Mayo Clinic as a whole. I just wonder if Rochester may be better for you to travel to but I'm not sure. Haven't heard about that. I will say that Dr. Cheshire is a very smart doctor. He is the head of the neurology department there and is very knowledgeable about research, POTS, etc. If you decided to go there, make appts. with the other specialists for the same week so you don't have to go on standby. I was overall pleased with my week spent there.

[jodielynn]

Thank you everyone for your input. Its great to find this info out know before I make a decision to go down there. Going to have to seriously sit down with my dr down here and decide what is best. I am so thankful for this forum.

Well keep you posted on what we decide to do.

[maggie]

I had Dr. Cheshire for my neuro at Mayo. He did give me my dx, but unless things have changed at Mayo, they do not treat pots there. If you still want to go there I would make sure if this has changed. I was not pleased with Dr. Cheshire. I had to go home for three weeks and then come back for my testing. During that time he asked me not to do any research on pots before getting my dx. He stated that he would give me all the info I would need if I did have it. When I finally arrived at his office for him to give me my results, he told me I did have pots. Having done what he asked, not researching I didn't know what questions to ask. He gave me five minutes and we were out the door. I received my dx five years ago, I hope things have changed there. They did not refer me to any doctor in the state of Florida, nor would they. I was on my own trying to find a doctor that had knowledge with pots. I finally found a neuro who has taken me on, but it took eight months to find and much researching and phone calling. This was my experience with this doctor, others may have had something different.

Maggie

[momdi]

I don't know about the Florida Mayo, but our experience with Dr. Low at Rochester was virtually NO follow up. The work up and diagosis was great. We already knew that Mike had POTS from a TTT, but Mayo did the sweat test (neg), the norepinephrine test (pos), and total sodium (too low). Knowing those things were invaluable to helping us to better understand POTS.

But if you already know that kind of stuff and are looking for treatment recommendations, our experience was that Dr. Low prescribed Inderal 10 mg three times a day. When a local doc wanted to add mestinon, I tried contacting Mayo. Two or three months later I received a one line note from Dr. Low saying that mestinon is often a good idea in POTS. That was it.

Reading other posts here on Mayo, it seems that they are inherently weak in follow up, or simply choose not to do it. I think they are mainly an excellent diagnostic place, but that's the extent of it.

Good luck!