Forum and Doctors

[justme]

I have been visiting this site ever since we saw my wife's medical records before going to Mayo back in October and saw the term POTS in her records as being a possibility. It was the first we had ever heard of POTS or that they even thought she might have it.

I have only recently started posting. There are a few things that I would like to ask about and get opinion, but I thought I'd start with this one as I believe it is the most important.

Is there any way to encourage doctor participation on this forum or even get doctors who are familar with POTS to at least read the posts? I am still amazed at the fact that we went to Mayo and they are familiar with POTS (actually they have a number of research studies going on right now), but yet these same doctors are under the impression that somebody with POTS can hold a job.

I understand that not everybody's symptoms are always as severe as my wife's and many who post out here, but the perception that somebody with moderate to severe POTS could ever hold a job is insane to me. There is no employer in the world that would be accepting of the absenteeism (sp) that is associated with this.

There are days where people with POTS are flat out too sick to work, can't concentrate, have blood pressure too low or heart rates too high to do anything. Granted, there are days when people with POTS can function normally and I think this is where the confusion comes in. If you look at a POTS patient on a good day, you would never know there is anything wrong. Also, I think most POTS patients get good at dealing with their symptoms, because they have to just to survive day to day.

It is even a challenge for many POTS patients to maintain a sense of self worth. She has had this for 15 years and is in her early 30s. It crushes her that she has days when she can barely get out of bed (if she can even do that). It's not that they don't want to work, it's that they CAN'T work.

Sorry for the lengthy post, but both me and my wife find this very aggravating. It is almost inconceiveable that folks who have any type of understanding of POTS can say those who have it can work.

Any ideas?

[EarthMother]

What a beutiful summary, it is so clear that you understand what your wife if going through. Deep bow of gratitude. ~~~~.

As for the likelyhood of doctors actually "reading" these posts ... . My sense of the medical community is that they really like the birds of a feather approach. It would however be a great idea. I would like to encourage our medical teams to talk to each other. My doc sent an email to one of the researchers at Mayo last month and the researcher sent an email back! I'd like to see more of this kind of professional networking.

You are so right about the misperceptions out there ... because some of us do still work (with an incredible amount of sick leave, and working from home as necessary in my case -- and I know this is very rare.) Or we work between relapses etc. My cariologist actually referred to POTS as a nuissance disease. Bless him though, I think he was really just trying to put me at ease. He was also equally stubborn about insisting that I continue to work.

That said, POTS is beginning to be recognized by social security disability criteria. But we have a long way to go. Here's one link I came across that mentions neurally mediated hypotension (tilt table test) is one of the criteria that is considered by SSN.

http://www.cfids-me.org/disinissues/ssa0499.html

Good luck to you both. It's very good to have you here.

EM

[futurehope]

Amen, brother and thank God there are people like you out there taking care of your wife. God bless you!

[geneva]

It is refreshing to hear someone who does NOT have this illness be able to articulate so well what it is like. During a recent lengthy bad spell in December, I said to my husband, "I know it can't be too much fun right now living with someone with a chronic illness". He thought for a moment and said with a smile, "well, I think it is definitely better than being the one WITH the chronic illness". Having a supportive family really does make a difference.

As for doctors, I am not sure what the answer will be. Probably time. I remember my early trips to new doctors and even the ER and when I said POTS the expression on their faces was one of NO recognition. My internist said it is because most doctors are never trained in depth on the ANS in med school. I have discovered that I get further with new doctors if I refer to my condition as dysautonomia vs POTS. One ER doc said they looked up POTS on their computer and couldn't find it anywhere (I guess that means I don't have it, right?). On my most recent trip to the ER I said only dysautonomia and the doc FOUND it and I was treated as a much more credible patient!

Work is such a tricky question and each of us is so different. I know there are people out there who take advantage of disability but if anyone could walk in the shoes of someone with dysautonomia for a day or week, they would know we would rather work any day than live like this.

Good luck to you and your wife and glad to have you participating!

[MomtoGiuliana]

As far as the work issue, and even a definition of "moderate" or "severe" POTS, the problem is that we are all so different in our symptoms and their severity. It is not an illness that can be pigeon-holed, and we all know that's what doctors like to do, as well as insurance companies and govt agencies. Another problem is that it is truly a cross-disciplinary illness since it affects many different systems--and we live in a time of ever increasing specialisation of doctors.

It would help us certainly if doctors would educate themselves on this disorder, especially general practitioners. My little sister is now beginning to develop POTS, I think (she's 25). At least we know what it is. She went to her internist and told her she thinks she could have POTS b/c that's what her older sister has, and her internist said, oh no, I don't think you have tuberculosis of the spine!

I think that those of us who are well enough to should band together and work on this problem of doctor ignorance. Actually, my POTS doctor gives seminars all over the Delmarva Peninsula to doctors--for the past year.

justme, you sound like a wonderful caregiver. It is hard for most people who don't have this problem to be so truly empathetic.

Katherine

[Guest tearose]

Thank you for sharing your passion and compassion. You and your wife are so fortunate to have each other to go through life with! My husband and I are soul mates too.

I share in the frustration of going through many years of not having a full understanding of what exactly it was I had and what I could reasonably expect from my body for the future. As I look back, I think part of the problem has been the fairly new research and understanding of the POTS disease process. Also, doctors as you very well know, are more afraid then ever to give information to us. We have to know to ask the "right" questions to extract the information we need. We have a variety of doctors with a variety of skills and knowledge. Some that want to push us away, some that want to give us the magic pill to quiet us and a very special few who actually care and are trying to find the right treatment. I also can't understand why doctors don't participate in our forum.

I am unable to work or do any sustained task on a regular basis and I gave up on expecting people to understand after years with POTS. I kept thinking I was going to "get better someday", so I tried numerous job experiences but nothing ever lasted, naturally! We wound up having to move to a very small home so I could just manage my activities of daily living. I have had to live more simply and keep our expenses as low as possible. It is a struggle. I don't want to discourage anyone to keep having hope or belief that they may in fact improve. I just haven't been able to demonstrate that in my case. My daily statement to live by is "I cannot control what happens to me, only how I respond". Keep your strength up "sir justme" and thank you for making me think about these things today. Maybe I can do something to get just one doctor to read our forum..tearose

[Michelle Sawicki]

I would LOVE LOVE LOVE to have Dr. participation on this forum. However, my experiences with dysautonomia doctors is that they are SWAMPED. There are too few doctors and too many patients. Many doctors probably don't have time to read their mail, let alone read the forum. Though I think they would get a much better understanding of dysautonomia if they did read the forum.

I went to a dysautonomia conference a couple of years ago where some of the big wig docs were presenting. One of them was actually standing up there saying "POTS symptoms are present at all times. If a patient comes to you that has POTS you will always be able to tell they have POTS. Their heart rate will always go up 30 beats per minute". Now I don't know about you guys, but there are days I feel really good and my heart rate might only go up 20 or less beats per minute. I suppose, if I went to see this doctor on one of those days he would tell me I didn't have POTS....? Scary, because these are the people publishing research about us and telling all the other doctors what our disorder is all about. But I've gone off on a tangent....

My hope is that more and more doctors will continue to get involved in treating and researching dysautonomias. I think most of us know we have limited time at the doctor's office and probably are only reporting our most severe symptoms. Hopefully more research will one day be published on the fluctuations of dysautonomia, and how patients can feel good one day and awful the next. Hopefully then people will begin to understand...

Michelle

[MightyMouse]

I'm with Michelle on this one. I will tell you though, that some docs DO check out this board and others, but their time is so very limited, so it's unlikely to get ongoing participation. I think that one of the best ways to get the point across to the doctor's who work with us is to continue to share during your appointments, as concisely as possible, how dramatically your life has been affected by having POTS. My old GP and I had an understanding--He knew that I'd never show up at his office unless whatever was going on had become too much for me to manage w/ good sleep, good diet, over the counter meds, etc.

Also, some doctors are just beyond convincing; many have been socialized through their educational system to make assumptions about patients that are not in our favor (such as the mental leaps made when they see someone with POTS: we look well and don't have abnormal blood work, so the first thought is then a psychological problem like depression). I think the first step toward fixing that is to go to the source; one of my old jobs had a list of knowledgeable doctors (we screened them) who were willing to give guest lectures that we arranged and our staff accompanied them. Worked great in developing a better system of screening young children for autism...don't see why that couldn't work for us too... however, I could see that being a bit farther down the road for us as DINET continues to grow.

Nina

[seaboardbc]

Justme-

You are awesome!!! Fortunately, I have a husband as wonderful as you, but sometimes I forget to tell him.

On my "good days", I tell him that I think it's worse being the healthly spouse married to the chronically ill spouse. And then he tells me all of the wonderful things he gets from our relationship. But, on my "not so good days", I tell him that he just doesn't understand. And then he's quiet. You made me realize how much he does understand and because he understands that is exactly why he is quiet.

I know that he always understands (or does his best to understand), but on my "not so good days", I seem to forget. After reading your post, I'm going to try my hardest to never again tell him that he doesn't understand. Thanks for opening my eyes.

Now, I'm going to go tell him that I think he's wonderful.

Bren

PS I know I sort of got off on a tangent. Yes, I would love to have doctors involved in this forum. Whenever I go to a new doctor, I tell them about this site and ndrf.org.

[futurehope]

Momtoguiliana, Your younger sister's internist mentioned POTS as being associated with tuberculosis. I just wanted to mention that someone in my family had had a form of TB called POTTS which involves the spinal column. The patient's spinal column was deformed since contracting the disease in childhood.

[Marg]

futurehope -

That is interesting to me! My daughter was diagnosed with scholiosis last year but showed no signs two years previously. Could this be yet another condition that is related to POTS?

Anyone else have any back problems?

Margaret

[futurehope]

Marq, I'm sorry I mixed you up. What I was trying to say was --- there is a DIFFERENT condition which is a form of TUBERCULOSIS which is called POTTS with two T's. It has nothing to do with the POTS on this forum. POTS on this forum stands for Postural Orthostatic Tachycardia Syndrome. POTTS (the tuberculosis) is named after a doctor I think. Sorry for the confusion.

As for your daughter's scoliosis, I really don't know of any connections to our POTS.

[denabob]

I would like to say that my doctor is who told me about this forum but like Michelle said they are so busy because of the lack of trained docs that they dont have the time to respond. The main problem with pots is that we dont always have only pots and our symptoms arent always the same much less always present. I am one of the few lucky ( and I use that term loosely) ones who has been approved soc sec disability with NCS and POTS as a symptom of that. However they want to classify it is fine with me as long as I can support my kids! I find it very encouraging to see that you have a real grasp on your wifes' emotional side to this illness! I've been through a divorce during my struggle for diagnosis and have since been dating a very understanding man so I can honestly tell you what a difference your support can make in your wifes' life!! Tell her to hang in there and not to be too hard on herself. I wish you both alot of happiness.

[Michelle Sawicki]

Marg,

Scoliosis can be a symptom of Ehlers-Danlos syndrome, which has been linked to POTS. Has your daughter been checked for it?

Michelle

[justme]

That is awesome that you got on Social Security Disability. We have yet to start the process, but my wife also has NCS as well. I believe it is very important to have an understanding significant other as this can be the source of a great deal of stress on a relationship.