Jump to content

Docs In Mn


jjpots

Recommended Posts

Hi,

I'm brand new to this so here goes. I was dx with POTS about 8 or 9 years ago. I have also been dx with cardiomyopathy two different times. My heart function has improved and I've been taken off my heart meds. My cardiologist was hoping that taking me off the meds would help my POTS which seems to have got worse over the past few months. I've been having a lot of trouble with fatigue. This past Monday I had a weird thing where all of the sudden I felt like I was going to throw up. I had dry heaves, started shaking and my pulse went nuts. It didn't last too long but all week I've been feeling super tired and out of it.

I say all that just to see if anyone has experienced this or has the same dxs. Also, I have seen Dr. Low at the Mayo in Rochester but it's not exactly close to me. I see on this site that there are some docs at the U of M and I was wondering if anyone could recommend one?

Thanks for any input!

JJH

Link to comment
Share on other sites

The only doctor I dealt with that would be available at the U of Minnesota that I saw for POTs and he was wonderful and I truly miss him as he had been working 1 day in my area through the U of M in the Cardiology department/heart center, was Dr. Scott Sackaguchi (not sure of sp?), and he is an electrophysciologist. Since I have a lot of issues with pulse/heart rate/function, this was the best option for me. Even though we couldn't find the perfect med for me, he tried so hard to help and would truly listen to all my crazy symptoms and didn't feel I was crazy :) I'd definitely recommend to give him a try. He's probably listed under Cardiology or an Electrophysologist specialist. I know you were looking for a neuro, but haven't found one that has been much of any help, and I saw Dr. Larson in St. Cloud and he is world-wide known as brilliant Neurologist- seriously - the guy is like 65 and apparently helped write some sort of Neurology manual with some guy that wrote everything there is to know about the nervous system, but he basically told me that what is wrong with me had been formed while I was being developed, like sort of a defect and other than accepting the condition as it is, and explained in detail why my nervous system react as it does (he spent about two hours telling me the medical aspect of the condition -- I was so exhausted and weak after the appointment from having to sit there so long )-- but he didn't have anything more to offer as to how to help me feel healthier. I think had there been something he could have done or suggested, he would have, but there just isn't a cure all at this point in time.

- Tammy

Link to comment
Share on other sites

I can recommend a few doctors in the Minneapolis area.

Electrophsysiologist:

I have seen Dr. Bendit at the U. He is very knowledgeable and was able to diagnose me, but he travels the word and is hard get get follow-up care. Be careful if he recommends another tilt. He likes to study patients, and he pushed me beyond what I thought was reasonable. ( I was told I had the longest tilt test on record) I couldn't walk more than a shuffle for 3 weeks. I would have an advocate in the room if I needed to do another one.

I currently see Dr. Melby at Abbott, and have liked how responsive he is. He worked with Dr. Bendit at the U for a while. He seems very current on POTS research.

Neurologist:

I currently work with Dr. Golden with the Noran clinic. I do not know of an autonomic neurologist in the metro area. He has been helpful with the left sided weakness I experience. He is very popular, and takes a while to see. I also spent a lot of time at the U of M neurology department. I was there about 2 years ago, and they did not have an autonomic neurologist on staff, nor a very good understanding of how to treat me.

Good luck on your search. I get very shaky when my POTS systems are bad. It sounds like you may have been close to passing out.

Rhonda

Link to comment
Share on other sites

Tammy,

Thanks for the info. So do you think if the only current issue that I know of is the POTS, this would be a good dr.? I have been to the mayo in the past and I like how the cardiologist and neurologists worked together but at that time I think the cardiomyopathy was still an issue. I'm just confused as to who I should be trying to see even.

MNSue,

Thanks also for the info. like I just said to Tammy, I'm not sure which type of doc I should be trying to see. The last one I saw was and electrophysiologist and he said he thought my cardiomyopathy had improved to the point of taking me off of my heart meds. He thought that would help slow my heart down but I'm still having problems. I'm just not sure if he has the knowledge of POTS that I would like him to have. If POTs is the only issue now do know which type of doc would be appropriate?

Thanks,

JJH

Link to comment
Share on other sites

I would go see Dr. Melby or Dr. Bendit. They are Electro physiologists and have a number of patients *** POTS and other issues. Both are good Doctors. Dr. Bendit has seen everything and works with Mayo a lot. Dr. Melby is good with ongoing care. Both Dr. Melby and Dr. Bendit treat POTS patients.

Good Luck.

Rhonda

Link to comment
Share on other sites

Hi Rhonda,

Do you have to be referred to either of these doc to get in to see them? Do you know if it takes a long time to get in to either of them. Is Abbott part of the Mpls. Heart Institute do you know?

Thanks again for your input!

JJH

Link to comment
Share on other sites

I agree with Rhonda, and electrophysicologist seems to have more understanding in our area than the neurologist do, unless you go to the Mayo. I have seen Dr. Bendit also, as he worked with Dr. Sakaguchi also for 1 day a week in my local area. Dr. Bendit definitely likes to study each case and puts you through lots of tests. However he was the first doctor I ever saw many years ago and due to how young I was he immediately figured I was on street drugs as to why my body was having so many problems - I was so upset that he'd even suggest that - so for us it didn't exactly start off on the right foot. Dr. Sakaguchi was okay with just looking through the tests I had already done and going from there, so it really depends on what you are looking for in a doctor.

I think you usually need a referral for speciality through your regular physician, but not always, I think it depends on your insurance also.

Hope you find someone who will meet the needs you have and be able to help ;)

Link to comment
Share on other sites

Guest tearose

Since 2002, I have seen Dr. Robert Fealey at the Mayo Clinic and found him to be an outstanding physician, and incredibly insightful. He is not only brilliant but he is compassionate, helpful... an incredible human being who exemplifies what the Mayo Brothers wanted for those seeking healing.

I truly have the best of care with him in charge of my care and cannot say enough to recommend him to you.

best regards,

tearose

Link to comment
Share on other sites

Tearose,

What dept. is Dr. Fealy in? I saw dr. Low in I beleive it was neurology and Dr. Borgoson in cardiology. I definately like how the Mayo works with all the diff. disciplines together. I'm just trying to figure out if I can go there again. Last time I was there 3-4 days and not sure I can afford it plus theres the kids issue and where do they go.

Thanks for your input. Now I guess I just need to sort this all out and make a decision. I'm the kind that once things settle down I'll be like, well now I don't need to go because I'm not currently having issues. I suppose that's not the right attitute. I should get it checked out so I know how to keep it under control for next time.

I am feeling the best today that I have in a week- yeah! Maybe it was just a passing virus and I can go back to just being tachy. That doesn't seem so bad now:)

Link to comment
Share on other sites

Guest tearose

Good news is Fealey is in Neurology! He has done similar research and publications as Low too. He is a kinda like a twin of Low in that he is just as brilliant...I think Fealey exemplifies the "human-interactive-compassionate" physician...

Having been to Mayo three times over 16 years, I think unless your symptoms change in major progressive ways, you could probably wait between visits. Unless you need to be maintained. Do you have a good local to you pcp?

best regards,

tearose

Link to comment
Share on other sites

I beleive when I was there before I saw Low and Dr. Borgeson in cardiology but he was in the heart failure clinic (because of the cardiomyopathy) so not sure he would be relevant now. I don't really remember much of Low so maybe I'll see if I can see your guy. I'm leaning toward the Mayo just because I like the way they work together.

I think my pcp is good. He really listens and I think he works good with the specialists.

Chat later,

JJH

Link to comment
Share on other sites

Guest tearose

for my heart issues Fealey sent me to consult with Dr. Bradley...he is an electrophysical cardiologist.

Bradley is another gem. I think he has a similar style to Fealey in that he explains everything and is clearly has expertise in his field.

Yeah, it is incredible how they maximize your limited time there.

tell us what you eventually decide.

best regards,

tearose

Link to comment
Share on other sites

Hi Tearose,

Well, after talking with another family member I was convinced to go back to the Mayo. Looks like it will be the beginning of Dec. but we're still working on the exact date. I'm trying to get it after my dad flies in from AZ. Then I would either have someone to go with me or someone to help watch the kids.

They want me to see the same cardiologist as before. I told them to make a note that I had had another cardiomyopathy since last time I was him but that my fx was back up. I told them I thought i was more of a pots issue now. I guess we have to start somewhere so that's o.k. I really liked that doc. Maybe I'll get to see your Fealey guy. (I have to laugh about his name though)

Sorry to hear you are not feeling well. Hope things improve quickly for you!

JJH

Link to comment
Share on other sites

Guest tearose

Sounds like a good plan.

May I suggest...since you need your autonomic issues addressed, have your local pcp request of the chief of your case (the previous cardiologist) to see if you can be scheduled for a neurology consult. You don't want to get there and find out you must wait another week or month to be fit in!

(thank you for your well wishes, I'm working on it!)

take care,

tearose

Link to comment
Share on other sites

When the called back to schedule they actually said that my cardiologist wanted me to see Dr. Low and so scheduled both.

JJH

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...