What To Do If You Don´t Have A Doc Any Longer...?

[Goschi]

Hi everybody!

I am facing a problem which I actually don´t know what to da at the moment.

During the last weeks I actually "lost" all the docs who diagnosed (and partly treated) me through the last two years.

There were altogether 4 docs who diagnosed me with POTS (2 of them by TTT, the others with numerous standing tests). Afterwards they tried the usual meds - most of them had little to no effect on my POTS. The "POTS" specialists are obviously at the end of their rope with me and one after the other eventually dismissed me. Thus I don´t have a "POTS doc" right now.

In addition, I had taken the initiative and went to some other specialists (neuro) who finally diagnosed me with small fiber neuropathy by skin biopsies (the POTS docs themselves were not interested in that at all). Anyway, also These docs showed no further interest in pursuing the SFN (finding the cause, treating...) after they "successfully" made the diagnosis.

Lately I went to a geneticist to be tested for Ehlers Danlos and Marfan (both negative), but I found out that I am MTHFR homozygous. Again, no further treatment from these docs...

So, summarizing again - I rather easily found some docs (by myself) who actually had no problems diagnosing my different conditions almost immediately - and then actually dismissed me without any further assistance...

Has anybody made a similar experience...? And if so, what did you do as a consequence...?

Thanks for any adivce! I wish everybody a nice day!!

[corina]

Hi Goschi. I had this same problem. The doc (top in my country) that diagnosed and treated me gave up after trying everything on his and my list. Some meds worked a little others didn't at all or couldn't be tolerated. So I was send home to try and live with it which I really couldn't. So after two years I went to see him again (as he's the top doc) and told him that I need some kind of perspective and he was the doc to take responsibility and help me. He was a bit skeptical but from that time we started working really well together. I didn't expect miracles and he opened up for my ideas. In reality this means that I keep searching for new options (meds, exercizing programs etc) and he listens and (dis)agrees on what I come up with. We very much respect eachother. No he doesn't have all the answers (often tells me I know more than he does, which I find a bit sad) but together we work on making the best choices for me to live life to the fullest.

I'm not sure if this could be a possibility for you, just thought to let you know as for me it seems the best I can get! Other than that I have a great GP who is willing to discuss and think over everything that comes up (like incontinence, sugar issues, brain fog, painful injections and you name it), a really good cardiologist who I can ask things whenever needed and a FAB team of PT, Fysiologist and Trainer. All in all it took me about 15 years to get all these fab people working with me but atm I think I couldn't do any better re my medical team!

[Goschi]

Hi Corina,

thank you so much for your reply - I am really very sorry to hear that we seem to be on the same boat... (let´s kick the docs over board and enjoy the cruise, looking at the blue sea, having cocktails...;-))

I guess, I could reestablish a relation to one of my 4 POTS docs (they are the "POTS-top docs" here in Vienna) like you have it. I would definitely get an appointment any time and most probably they would also agree that I keep searching for new options (as I am doing all the time), then we discuss them and the (dis)agree. Btw, I was already told by all 4 of them that I know more about POTS as they do - so I will hear this again and again, if I start to get in touch with them ;-).

My main problem with (re)establishing this kind of doc-patient-relationship is most probably my personal approach. I actually don´t want to talk to them about "POTS treatments". This would only mean "masking symptoms" being the topic once again. And that is 1) what mostly didn´t work with me and 2) what in fact I actually don´t want at all.

I am already on my way to dig further into my underlying cause(s), having made some first findings successfully! But for going on this journey, POTS docs are definitely the wrong partners... (they even admit this, also not being angry about me - just saying their approach is different, it is actually nothing more than "getting POTS symptoms under control".)

But I have already learned that this is not really going to work, at least not to a satisfying extent. (The POTS-docs know that too - some of them were honest enough to admit it to me....)

Thus my particular problem at the moment is actually more copmplicated. When I go to docs in the fields where I know that there´s a high probability that my underlying causes are in their specialization, it doesn´t work - because as soon as they hear that I have POTS, they want to refer me back to one of the "Top 4 POTS docs". But they don´t want to understand that I have already left the stage of getting diagnosed and trying to "mask symptoms" far behind me. Even if it is their specialization what I want them to test me for, they are usually not willing to do this, as soon as they hear "POTS, POTS, POTS....!"

That´s were I am actually pretty much stuck at the moment... I guess I will have to take a couple of days and rethink the whole situation, in order to develop a new strategy. By no means I am willing to go "backwards", as I personally have already invested so much time and energy in educating myself and going FORWARD!

Once again - thank you so much for your reply and reflecting my situation! You are a such a good friend, if you don´t mind me saying this!!

[SarahA33]

Hi Goschi,

I've been in situations with my medical care where I've also felt like I didn't know what I should do next.. it's really frustrating when you feel as though you are going in circles. Like you and Corina both mentioned, our doctors are used to us having a ton of knowledge about our conditions, just as much and if not more in certain areas. I think that is challenging for both sides. You mentioned you may consider going back to one of the POTS doctors, do you think that this doctor will understand your concerns and be willing to work with new specialists in the future?

Best of luck to you,

Sarah

[Goschi]

Hi Sarah,

thanks very much for your ideas! I have already thought of such a constellation of docs (=POTS doc working together with other specialists) a long time ago - however, it doesn´t seem to work, at least not where I live... Cooperation between docs (be it from the same field or another one) seems to be a kind of "unwritten taboo" in my country. :-((

I still remember when I had a neuro and a cardio a the same time (not that wrong für POTS, I guess...). As they realised, both docs asked me quite upset (and independently from each other):

"So what, are you my patient or Dr. xxx`s one? Just make up your mind, you can´t be the patient of two docs for the same condition! I really couldn´t believe my ears... Also some hospitals almost denied to accept me, as I had already been before to another hospital for the same desease... (and all that had nothing to do with our health insurance system - every appointment and hospital stay was covered without any problems by my insurance).

That must sound almost crazy to your ears - but the European and the US health systems are actually very, very different in so many ways - not only institutionally, but particularly concerning doc´s attitudes and approaches, as I have learned since I am a member in worldwide patient forums...

So, I will have to create my very own strategy (once more) - but nevertheless, thanks a lot again for reflecting this situation for me!!

Best wishes!!

[corina]

I know the feeling Goschi! I couldn't convince my doctor to try find what is causing all this. I have several options (EDS runs in the family, as does auto-immune disease, I have MCAS symptoms) that may contribute to all my problems. I am a little in doubt, wanting to know what exactly is going on healthwise, while at the same time I feel it's important to live my life to the fullest, make the most of it as I only have one (or so I believe!). I don't want to spend precious time chasing doctors esp when I don't get any answers! Just my two cents of course! Oh and feel free to call me your friend!

[gjensen]

This seams to a place that many of us come to.

I have "fired" more doctors than I care to admit.

I do need to go around. There are some things that I have to deal with. I have no choice even that I am not especially enthusiastic. Other than dealing with the most concerning necessary things, I have had my fill of this rabbit's trail.

Goschi, if you prefer one of your previous POTS docs, I would return there. You know by now what you like in a doctor and not. If you have neuropathy, finding the cause of it is likely finding the cause of the POTS. That is just as difficult unfortunately. Could it be that seeing a neurologist that specializes in neuropathy would be a good option?

Heck, I have nothing good to offer. I am in the same leaky boat, but I do sympathize. I hope that you find what you need and looking for soon. I wish that for everyone here.

[SarahA33]

Goschi,

I'm sorry that things have been so complicated for you.. it must be very difficult to navigate through the doctor issues while you are feeling poorly

[Goschi]

Hi, gjensen,

I have not actually "fired" docs (yes, maybe 3-4 of them though), I have rather been somehow "dismissed" by them, when the actually didn´t know what to do. (I should have fired the before ;-))

And yes, I am thinking about going back to one of my POTS docs. Still didn´t figure out which one will become my "victim"! ;-)

And also yes, if I find the cause of my small fiber neuropathy, I will most probably have found the cause of my POTS! Therefore, working on this issue, is my priority. Finding docs here, who specialize in neuropathy in general, is actually an easy task. But finding someone, who is willing to treat a Patient with small fiber neuropathy - wow, this is almost impossible, as I have learned during the last 12 months...

Anyway, I won´t give up the struggle!

Best wishes to you!!

[Goschi]

Yes, corina! Chasing docs, who can´t help you, is actually a waste of time in our already very complicated life... Have understood that rather soon, but simply didn´t want to believe it, to be honest....

Let´s hope that finally all of us will find our underlying cause(s) and a proper treatment! Don´t ever give up hope!!