Suggestions On What Type Of Doctor To See

[Joann]

Hi. I am having a problem that I am told is not from my hyper POTS, but none of the doctors seem to know what it is or what type of doctor might help. I actually think this is causing some of my hyper pots.

I am having intense pain below my right rib about 4 or 5 fingers down from the sternum, it prevents me from bending, lifting anything or even driving, doing stairs, even being a passenger in a bumpy ride. Anything that causes compression or pressure or movement in this area. It is not just the intense pain it also brings extreme pressure to this area and into sternum and the surrounding abdomen area, it can then cause pain in the mid back and moves up to left side of neck, and my bp then goes crazy high and I sweat. For a long time afterwards, sometimes for days, I will have this and my pots symptoms. When it occurs it actually builds as time goes by.

I have had ultra sounds and cts of the abdomen and pelvic area in the past 2 years. Recently I had ultrasound of kidneys and renal arteries something has shown up and they are re-doing this test (I am waiting on results) but I was told that they wouldn't cause the current problems.

I have had MRI of my thoracic back and neck ordered from a internal medicine doctor, he said there were some problems but shouldn't cause my symptoms. They have checked for pheo tumor also.

I have seen gastro's, urologist, pots doc, primary. Does anyone have any suggestions. I know there is something wrong in my torso. I know it is more than just a muscular or spine problem. Maybe the spine is hitting some nerves and vascular vessels? So who would look into this? Is there some type of doctor that looks at not just orthopedic part of spine but the entire torso, the nerves blood vessels and spine? It also seems to cause gastro problems after it occurs.

There are so many specialists out there and each one I see suggests another type, I am bouncing back and forth and as you all know each specialist takes forever to see. In the meantime, it is getting worse and I am unable to do most things.It is difficult to get normal people to understand how bad it is because as long as I don't forget and do something to cause it, I am able to stand and walk and talk to people. Since they see me walking outside (to keep my from becoming totally inactive which will make the pots so much worse) they think it is not a problem. Sorry this is so long, I just don't know who to go to.

Thanks

[KareBear]

Do you have a good Internal Medicine doctor in your area? If you have a highly recommended doctor in Internal Med or even a different Family doc can possibly help. The reason I say this is because they see so many general illnesses and aren't focussed on just one area of the body so they tend to put the puzzle pieces together better and set you in the right direction. You may have to search around for one that comes highly recommended or one a friend may suggest but that's what I would try.

I'm sorry you have all this happening to you, it sounds miserable. Hang in there!

[Katybug]

I guess things that come to my mind is a possible dislocated rib (common in EDS patients) which I think many different types of docs could dx if they are looking for it and order the right imaging. Or if you think it is more of a nerve issue, a neurosurgeon that is familiar with spinal issues. I don't know if you are willing to wait and travel for this but there is a very well respected neurosurgeon in Bethesda, MD that deals with a lot of EDS patients that have a variety of spinal issues specifically chiari, cervical instability, and tethered cord syndrome, so he is very familiar with dysautonomia in these patients as well. His name is Dr. Fraser Henderson.

[Joann]

MedicGirl,

thanks for the suggestion. I have a primary but she is based out of a small hospital and has told me she doesn't really know what to do. She has agreed with my travel for POTS doctors and said she will help locally with their suggestions. I keep hoping I will find a new primary close by that is willing to search more. I am thinking maybe a younger new doctor may find this as a challenge. That or a natural/homeopath doctor, just not having much luck finding that doctor.

But I am happy my current primary at least acknowledges I have physical problems.

Thanks again

[Joann]

Katybug,

I was typing a response to Medicgirl when you sent your reply. Thanks for the suggestion I will look into that doctor. Honestly, I am willing to go about anywhere to get some answers. I have had xrays in the past so I don't think it is the rib, plus it feels like it is below and under this area. For a long time I thought it was a pheo or something wrong with a blood vessel but so far that is not showing.

[KareBear]

Do you still have your gallbladder? Has that been checked with CT or ultrasound recently?

[Joann]

Had an ultrasound of abdomen and a ct scan of abdomen and pelvic this past summer. It was suggested a hida scan to double check, but I am not having too much problems with eating it is more with movement. The tech of the ultrasound did say my gallbladder was extremely small but maybe just because I am a small boned person.

[Katybug]

Joann,

I also thought after reading your reply to MedicGirl that maybe an osteopath might have a new perspective on your problem.

[Chaos]

I was also thinking an osteopath might be helpful.