What kind of doctor is best?

[WeimerMom]

I have a problem and this seems the best place so far to get answers. I was diagnosed with POTS by Dr. Grub several years ago.

Just a list of some of the problems with my doctors as back up information.

1. primary care physican, too busy to learn about POTS and tries putting out little fires instead of looking at the big picture. Thinks that if I lose weight, suggested stomas surgery, that I'd be ok. Uped my synthroid to combat the fatigue....after over 2 years of complaining about it.

2. Cardiologist. after atenalol caused heart paid, said I'd just have to live with the symptoms. Didn't know how to treat me.

3. Endocrinologist. Got me a referral to my origial cardiologist and then to Dr. Grubb. but won't treat me till I get my "heart" straighten out....

4. Holistic doctor. lets not go there, Cost me $400.00 out of pocket to find out that I didn't do well on formulated synthroid med and the doctor was a very busy person who didn't want to be disturbed to talk about it. wanted me to wait until next visit.

5. OSU neuro something or other. Was supposedidly a specialist on dysautonomia. Told me that all my other symptoms were not connected only my syncope was related. I should continue to take ProAmatine and just get up slowly. All my other stuff is probably related to something else. That one cost me $350.00 out of pocket.

So you see I really don't have a doctor to turn to. I want to get my disability started at work, but they want a doctor to say that I can't work. I called Dr. Grubbs office and they won't do it because I don't see him often enough. He's so busy, I'm lucky to get one visit a year. I appreciate him, I do, however, I also know that he's so busy and he can't help it.

My problem is getting a doctor here that will help. How do you go about it.. I've called the insurance company, they don't list doctors by what they treat. I tried calling the neuro guys at OSU, lotta good that did. What kind of doctor is the best to start with? What kind of doctor pulls the most weight with the disability boards? I honestly think I'd get better, if I could get out of the stress of work, but I need an income and insurance.

Does a shrink help? They might be able to prescribe meds, but so far all antidepresants have had too many side effects.

I'm so frustrated....I did see something out there on one of the web sites that all POTS stems from something else. Ok, why didn't Dr. Grubb say this and refer me for more tests? Please, is there something more or not. If so, where do I go to get tested and for what.....

I also saw that some people refer to "catching" POTS. I thought it was hereditary and just gets flared up by stressful happenings......I'm so confused.....

[briarrose]

WM -

1. Fatigue can be more than thyroid problems, some people find it to be just part of the whole POTS process. Are you anemic?

2. There are several other beta blockers that they can try you on. If one doesn't work have them prescribe you another.

3. What's to straighten out?

4. Let's not go there....money back please!

5. Fired....Money back please! And return to med school or better yet, I have some handouts that I would be happy to send him that explains the basics!

If you see Dr. Grubb at least once a year I'm sure that they can switch you around to different beta blockers. You might also call Dr. Grubb's nurse and have them send you some handouts and there are several great websites for info. When are you supposed to see Grubb again?

As for specialist, did you look on the NDRF website for specialists in your state?

Sorry can't help you with the disability thing. I can't go that route no matter how bad I get, I have to support my kids and believe me there have been times when I didn't think I could go another day.

[divine spark]

What state are you in? (Other than disgusted, of course. )

[Merrill]

Hi -- I can't answer all your questions, but I want to add my 2 cents on a couple things you said. 1) I do not believe "all POTS stems from something else"-- presumably you mean another health problems. I'm a perfect example of how this is possible--I have POTS and only POTS (and the symptoms that go along with it). These symptoms are bothersome and worrisome, and they keep me from doing things. But for me, the symptoms are not incapacitating (thanx G-d), and I'm able to work. I've had it for the last 30 or so of my 42 years.

2) It's also my understanding that you don't "catch" POTS. It can be hereditary, but it isn't always. And it doesn't develop out of stress, though if you have POTS, stress can certainly exacerbate the symptoms. (Pots also exacerbates the symptoms of stress--it's a chicken egg thing.) Researchers aren't certain yet what causes it, though they know some things: 40% of people with POTS have something in common before onset: a severe flu or infection. Another 10% of POTS people developed it following major surgery, and another 10% following the delivery of a baby--it may have to do with an autoimmune reaction to a foreign body. As for the rest of us? Mystery. They're working on it.

It does sound like you've got several health issues going on at once--not just POTS--and that's sooo tough! I do feel for you--and I know it's a struggle to find a physician who is both knowledgable and compassionate...and patient enough to listen and work with us to tweak the many meds to the right levels. Sometimes you can be on the right med but the wrong dose! Or the right kind of med (e.g., beta blockers) but the wrong one (they don't all work the same way). I typically ask friends and colleagues I trust for referrals; depending on where you live, the NDRF board may also help. (You can also call or email the NDRF for information.)

I wish I could help more on the disability...I hope you find some answers soon!

Merrill

[Sue]

I too see Dr. Grubb, and have the same problem. He is so busy you can hardly get an appointment in to see him and when you do it is months from the time you call. Guess that is what happens when there are only a few selected in this field.

I can give you a few suggestions though, your primary care physician is suppose to be your MAIN care giver. If she doesn't care enuf to follow through with your

care than you need to find a new primary care physician. Mine actually calls Dr. Grubb before she does anything. And they call doctors back more promptly than us.

I am in the process of finding a new "NCS" doctor. Dr. Grubb is a little too far and doesn't accept my insurance. At my last appointment I let him know this, he suggestion I find an "Electrophysiologist", specialized heart doctor. and also let me know I could call or new doc at any time. Nice guy..

Good Luck

and God Bless

Sue

[MightyMouse]

The type of doctor is less important than having a doctor who respects your input and treats you as part of the team. Being an autonomic expert is less important than being willing and able to learn about your specific problems, and being humble enough to acknowledge when you really DON'T know the answer.

Nina

[WeimerMom]

Thank you all for your input. Don't know where to start.

Briarrose: I know that my fatigue is more than thyroid, trying to convince a doctor is another thing. They see you for 15 minutes, if your lucky and with me, I'm talking a 100 miles an hour, just to get everything in and that's all she sees. I can look at almost all of my "problems" and link them to my POTS. I just wish I could make the doctors understand.

As far as the beta blockers, not sure why they haven't tried anything but atenalol and that didn't work. They, Dr. Grubb included, has been focusing on antidepressants. I will ask about other meds.

Merrill: I was on another site, I think. Sometimes I can't remember where I read things, might be on this site, but there was someone saying that POTS comes from some kind of neuro problem in the system and that all the problems, MS, NCS, etc comes from that. They were saying that treatment needs to start there. I guess that's what I was concerned about. I get aggreviated about the doctor treating all the little things instead of treating the POTS, but if the POTS is a "little thing" of something else, I need to treat the "big" problem. I was really concerned if this is the case or just someone's opinion. You know we all have them! As far as catching POTS, I don't remember anything but stress that triggers it. I can remember way back, a couple of times I had symptoms that are real close to what I have now, but not as severe. I believe that I was born with POTS. I had seizures at an early age but the meds were too strong, so my mother took me off them and made me "stay quiet". It wasn't until I became an adult and got into stressful situations that the symptoms started coming back. It really blew the roof, when I was trying to deal with a really stressful situation at work, and then I added two ailing parents and then they both died within 11 months of each other. I had about 3 years of constant stress. That ended about mid 2001, but I'm still trying to recover.

As far as doctors, I wish there were an easier way to find one. I know one person who has POTS but her sympotms are totally different than me. She loses weight to the point of danger, I'm just the opposite. I'm so big it's painful...She doesn't pass out, etc. Anyway, ask about her doctor, she couldn't recommend them. Didn't say why. So here we go again. If the insurance company can't tell you, what do you do, get the phone book and call each and every one in it.....That's how I lost money before. (OSU and the holistic guy)....

Sue, What kind of doctor is an Electrophysiologist. I'm willing to look for one too, if it will help. I looked in the phone book and didn't see any. Is Vaso depressor syncope the same as NCS. Both are syncope, so I guess it's close. Maybe I need one of these instead of a cardiologist. Maybe this is what that other person was talking about when he said it all stems from something else. Don't know..... As fas as my Primary Care doctor, I don't know if she'll ever get good at POTS, but she's more informed than any other doctor I've run into, but that doesn't say much either. It's just frustrating....

I want to thank everyone for letting me vent....and for clearing up several things. Does anyone know of a good doctor, of any kind, in Columbus Ohio?

Everyone get out and at least get 10 minutes of sunshine on this wonderful day....Blessing to all!

[MightyMouse]

You may want to consider seeing if there is a local chronic fatigue group that maintains a "good doctor" list. That's how I found one of my docs who I still use.

Also, this is one way to research doctors:

http://www2.rpa.net/~lrandall/webdoc3.htm#locate

I believe that when one says "electrophysiologist", they are refering to a speciality within cardiology. Dr. Grubb is one...also known as EP cardiologist.

Nina

[WeimerMom]

Nina,

Thanks I'll take a look at the website and the yellow pages. I appreciate everyone's suggestions. I'll be keeping the phone busy on Monday....

[WeimerMom]

Divine Spark

Opps, didn't mean to slight you. With all my gabbing, forgot to reply. I live in a suburb of Columbus Ohio.

[divine spark]

Here are two sites which list support groups in your area: fmaware.org and immunesupport.com.

I don't know what the requirements are for the kind of disability benefits you are seeking but these groups should be able to recommend a doctor who is willing to support a disability claim when appropriate, a doctor who knows how to write a disability evaluation report and a competent attorney.

I found both of my treating physicians and two disability attorneys this way. Last month I found an SSDI attorney for a friend who was injured at work via an FM support group.

[WeimerMom]

Divine Spark

Bless your heart. Thank you. I will start on these tomorrow from work. How did you find these? By web or phone book, etc. under what kind of heading? I'd like to keep this in my file of great information and be able to pass it on to anyone who might need it.

Again thanks so much

[MightyMouse]

check this one too! Took me a bit to find it (I used to have it in my favorites but lost it when I changed computers last Fall).

http://www.co-cure.org/USA_OH.htm

[divine spark]

Divine Spark

Bless your heart.  Thank you.  I will start on these tomorrow from work.  How did you find these?  By web or phone book, etc.  under what kind of heading?  I'd like to keep this in my file of great information and be able to pass it on to anyone who might need it.

Again thanks so much

You are welcome.

I have purchased supplements from Pro Health for at least 11 years and that is how I know the immunesupport.com site. Their owner, Rich Carson, is a CFS patient.

I had forgotten that Co-Cure has a good doctor list; my bookmarks got all messed up and disorganized with a computer change also, although I still subscribe to their daily emails.

The other one belongs to the National Fibromyalgia Association which is headquartered in my neck of the woods. My doctor is a long-time medical advisor for NFA, is editor of the supplement for physicians in their magazine, Fibromyalgia Aware, and I know some of the Board members. Had my health permitted, I probably would be an active volunteer for this group.

In fact, I have been pondering whether I should inquire about possibly getting an article on POTS published in this magazine since it appears that a number of us have FM or CFS or both.

[michiganjan]

Dear WM,

You have my sympathy. Both my parents died within 15 months of each other. I was 32 at the time and an only child. It was awful. In fact, it was at that time that my POTS first became apparent. That was 24 years ago and I have had a ton of more stuff wrong with me ever since. However, don't give up hope. I have had times when I have been much better. POTS can flare up and then calm down and flare up, again. Mine never goes completely away.

One of the hardest things for me to come to grips with is that I have to be the one in charge of my health and this means putting together my own team of doctors. I have done this and I have a good team now, but it was a long haul to get here. I had to rely on my intuition to judge each new doc and I fire them as soon as I realize that they aren't going to be helpful. I have been through a lot of Docs over the years, but the ones I have now respect me, want to help me, and listen.

Before I had POTS and all the other stuff (multiple chemical sensitivities, firbomyalgia, chronic fatigue, heat intolerance, exercise intolerance, just to name a few) I took any health problems to a doctor and just expected them to do the right thing. With POTS it is a whole different arena. You have to be the number 1 perosn in charge. Not a doctor. You direct your own health care with them as resources. It shouldn't be this way, but with POTS it is.

An electrophysiologist is a cardiologist who specializes in the electrical system of the heart. They are the arrythemia docs. Dr. Grubb is an electrophysiologist. Usually the cardiology dept of a large hospital has at least one electrophysiologist. Are you near the Ohio State University Hospital? Check with the cardiology department.

It has been my impression that the people with POTS who take charge of their own care, don't give up until they have good doctors, read, research, talk to others with POTS, and and do anything and everything they can to get themselves better get along better than those who aren't as proactive.

The thing that has helped me the most besides taking over as the number one in charge of my health is doing everything I can to live healthy. Over the past years I have made many lasting changes. Many of these are just the common sense basics like an excellent diet, watching my weight, and regualar exercise. (I know it isn't always possible to do this with POTS, but I am always right back at it if I have to miss out.) I also train with weights as much as I can stand to. And I think all these things have helped my body function better. I no longer have any friends who aren't really friends. I don't waste my time on people who aren't worth it. I have found that there are pleanty of wonderful people out there who will like me just as I am , POTS and all.

I am sending a little pray and many good thoughts your way.

The best to you,

Michigan Jan

[MightyMouse]

Okay, OSU has many cardiologists: here are the ep cardios:

http://careconnection.osu.edu/findadoctor/...vID=21258&SIDS=

http://careconnection.osu.edu/findadoctor/...ovID=1406&SIDS=

http://careconnection.osu.edu/findadoctor/...ovID=1463&SIDS=

http://careconnection.osu.edu/findadoctor/...ovID=1592&SIDS=

Nina

[dizzy]

There are also several ep cardiologist at Mid Ohio Cardiology at Riverside hospital in Columbus.

[goldicedance]

We are all in an area that falls between many specialities. Indeed it is difficult to get the doctor's time and attention. At some times during difficult POTS periods, I just want to say--I'll pay for an hour of your time so that there is no rush. That is impossible.

Right now, I am seeing an endocrinologist at WVUH who is doing some tests with octreotide. So far, I am getting a good response. He does take the time for talk, explanation and ideas. I travel about 400 miles round trip every two weeks to see him for these tests. I can say it is worth it.

My other advice is just keep seeking advice. We all need to be proactive and keep trying to see what relief we can get.

My prayers are with you on finding a doctor who respects you and your POTS. I get ticked off when doctors blame it on stress or nerves. That is not the case, as we all know.

Check out the site, www.dynakids.com or .org. Interesting information.

[Guest tearose]

Dear WeimerMom, I tried to focus on you doctor question...I too have developed a team approach to my care of me. The main doctor, so to speak is my internist. He and I work out a plan for the next few months or if needed next few weeks. If/when he suggests a specialist, we try to find a couple and I get to select the one to work with. This dysautonomia field is still quite new. We have the dual challenge of first finding someone who "knows" the field and then hopefully that doctor has an "enlightened/nurturing personality". Take care, tearose