ukwildcat

Funny I just posted about my RA visit(frustrated). Frustrated is how I am after almost every doctors visit. She did not know anything about pots either but she said she didn't know any way EDS or RA would be related to pots at all. She knew nothing about Mast cell. She did hypermobility test on me too and said I was definitely hypermobile. I am always thankful to hear that doctor was willing to look into your symptoms,conditions, and treatment. I am glad you have a doctor that is interested. mine wasn't. My family doctor recommended this RA doctor and I am so upset now that I didn't check into her (like I usually do). It was a horrible visit and I learned to always do my research ( or horrible visits are my own fault). Good luck to you. I hope you get a diagnosis and find a treatment or cure that works for you.

I went to see RA doctor today, after two positive RA blood test. First she didn't know what Pots or Ncs was. I should have left then. She got up to take I phone call, and I even told my husband "we should just leave". Later, she said RA and EDS were not related to Pots in any way. When I mentioned mast cell I was way over her head and I was the one trying to find out new information. She said that even though I have had two positive RA tests, she didn't know the standards that those test were compared too(one was done by Cleveland clinic and they said my family doctor should do a follow up lab which was also positive, I'm sure Cleveland Clinic doesn't have good standards lol). She wanted me to do new tests, at her lab. When I went to the lab area, I remembered that their labs were not covered by my insurance. I told lab worker that and then she and doctors nurse recommended I go to a different lab. The lab she suggested I go to was where I had the last RA blood test done, a month ago, the one she said she couldn't diagnosis or treat from because she didn't know their standards. I mentioned at the beginning of the appointment that my cardiologist (pots specialist) said she saw signs of hypermobility and possible EDS. The RA doctor questioned, why they would even think that. At the end of the appointment, she said probably hypermobility and possible EDS and joint arthrosis due to joint hypermobility. She was so busy looking at my hands that she wouldn't look at the joints (shoulders, hips, neck, back , knees and tops of feet that hurt me the most). You would think she would have a least looked at those to recommend who to see next if not RA. She said RA almost always shows up in hands first(I guess she doesn't know people with pots don't follow the medical rules).But also she said she couldn't say for sure I don't have RA. It was a useless visit. Hopefully, I don't have RA but no closer to knowing why joints hurt, lock up, and pull out of place.

My heart goes out to you. Pots is a difficult illness that changes our lives daily. It makes us different people, but maybe it makes us better survivors because we have to deal with so much. I hate this illness but I think hopefully it has changed me to be a nicer more understanding person(just with a little more anxiety and depression). I don't know what you have been though, all of our episodes and circumstances are so different but it sounds like you have people that you love and love you. I agree Christmas with pots is a challenge, that most family and friends don't understand, but with pots the only thing you can guarantee is that every day is different and hopefully tomorrow will be better.

Everyone amazes me in their medical knowledge and terminology. I know many of you definitely exceed me. I was just wondering though, many of you mentioned you were sick as a child or had a sickness later. I was very sickly(for lack of a better term, they said it was always an allergy of some sort) as a child too. I wonder if extended doses of antibiotics over long periods of time would make us more vulnerable to this protozoa than other people.

There are many good doctors out there, but it was recommended that I go to Bradley Tinkle. I was so excited that he was located by me and Cincinnati, OH. However, when I called, he left and relocated to Chicago. So, I decided to make an appointment with a doctor(geneticist), that was still located here and I also heard good things about. From what I understand, this doctor worked and was a team mate with Dr. Tinkle. We will see what happens from there. However, if you look up Dr. Tinkle, you can find a lot of information on hypermobility EDS. Another thing that I found was the beighton test. Look that up, it is one of test they do for hypermobility EDS. I may be telling you things that you already know. Im just starting to research information on EDS, so I am a newbie on this illlness. When you first start researching an illness, it is difficult to know where to start, what is good information, and the information that applies to you. All very confusing and overwhelming. Some people say not to look things up on internet, however I always think (after dealing with pots) the more I know about an illness, the more I understand when the doctor is talking to me about an illness. Also, I can be a better judge of the doctor, because I have wasted alot of my time with doctors that didnt know much about pots and how to treat it.

GTgrad24, I wish I had advice for you about EDS genetic counselor and tests but I dont. Instead, I am in the same boat. I have been having increasing joint pain along with pots. Due to my second positive RA factor test, I have been referred by my cardiologist and family doctor to see a rheumatologist and a geneticist. However, I have to wait till April to see geneticist and Feb. for rheumatologist. They did let me speak to a genetic counselor on phone, which helped me to understand some and ask questions about EDS, while waiting for my appointment in April. However, I really dont know what test they do etc. The unknown is always a little nerve racking. Good luck on your appointment. Any information you find out is always appreciated. Thanks for starting this post, I have also been searching for answers.

I have always had joint pain. I saw a rheumatologist in 2005 and got a positive (but a low positive) on rheuatology blood work. However, this past year, my joint pain has become more intense(some days unbearable). it has also become another problem that is keeping me from preforming every day activities, on top of my many other pots symptoms. Recently, told I also have hypermobility in my joints and I was given gabapentin but that has not helped my pain at all. Today they sent me again to get the rheumatology blood test done again(like i have money to throw away). I dont understand why they do these tests again and again. If it turns out different, which test do you believe. I get to point that I cry because mixed emotions, dont want tests to be positive that something wrong but want them to figure out what it wrong, so we can work to treat it. If this test is negative, there still is a problem that I have to deal with and need treatment for. It seems like Im pulling teeth trying to get help with this problem. I think this is a problem that doctors dont want to deal with because of so many problems with pain meds and side effects of other medications for pain management. dont mean to rant, just frustrated. let us know how your test turns out and treatment you receive.

I am so sorry to hear that you are feeling bad and scare. I have had ncs and pots for 15 plus years and still get scared during some episodes. I also have trouble with stairs, bending and lifting things. Pots affects everybody differently, so learn to listen to your body. Your experience with this illlness will be different than the next persons. However, Im still here, even though some days I feel like Im going to die. Also, I worry the long term affects that pots will have on my body, just wonder if doctors really know. Every day is different with this illness, it is like an unwanted adventure sometimes. Things will get better, after you learn how your body and pots react to different things, because though your illlness may not get better, you will understand it better. Even though it is a struggle many times(expect many ups and downs), it takes more effort, and illness may limit what we can do, but try to live your life to the best you can (it may be different but can still be good)

I think this will be a life long battle. Both my doctors have said, dont look back at my past life, it doesnt exist anymore. However, look forward and make the most of what you can with the life you have now. However, every time I read a post, Im amazed at how smart and well verse my dysautonomia group is. Then, it gives me hope of the medical advances we can push for. We have had to fight most of our life.

Just wondering??? Many of you say you go to hospital. My very first cardiologist, I went to, said he couldnt say what was wrong with me unless he caught an event. I asked him if I should go to ER next time I was having an episode. He said I would be wasting everyones time. Since that, I never went no matter how many times I passed out in a day, what I hurt when I pass out, or how bad an episode is. No matter how hard husband pleads. Just wondering why people go to hospital and if it helps when they go??

i dont sweat much when I exercise but all of a sudden I will just be sitting there and start sweating where chest is wet and back is wet(normally cold). If it is menopause, I have been in menopause since before i was 20. Sometimes wake up at night and sheets are wet with sweat. just a symptom of ncs and pots from what doctors say.

Ive had ncs and pots for a long time, since high school and I am 38 now. I decided long ago that my medical problems were in my hands(my new job). I had to research to assist my doctor in finding my diagnosis(and been to many rude and down right mean doctors-vey helpful to take someone with you to hear what they say medically and otherwise, because most people wont believe how they talk to you. after my husband heard how they talked to me, he became totally involved) also had to help my doctors to find possible treatments(many didnt work-very medicine sensitive). but please have faith. there are alot of us out there, that have went through what you are going through, and have made it, a little mentally scared but stronger. Search for a doctor that fits you, Dr.Grubb has so far ben my shining light. Believe that you know your body better than anyone else and trust yourself. Also, familly member as an advocate is always a great idea. there will be times you need them. my mom was mine, she did things even when I told her I didnt need her but she knew better. good luck to you. It is not fair but i think there is a reason why everything happens and some times, bad things just happen to good people.

I have poop issues too. Every time as Im rushing to the restroom (which i know where the restroom is in every store I go to now) I feel like Im going to pass out. I get black spots all over and very hard to see where Im going. I think, it is going to be wonderful ha!ha! when they find me passed out on the floor and I have pooped myself. Hopefully it is not summer time and Im not wearing shorts. When make it too potty, I still feel like Im going to pass out. Many times hold onto walls so dont fall off the toilet. the person next to me, when I finally fall off toilet, will have a great story to tell her friends.

I talked to doctors about my joint pain. My cardiologist did the beighton test on me (I just didnt know that is what she was doing till I saw it on your link). That is when she said I had hypermobility of my joints and prescribed me gabapentin. However, this has not been helping. I push myself to exercise every day, walk dog and try to do exercise tape. however this is becoming more difficult due to pots and now joint pain. What do you do to help your joint pain or treatment since you have been diagnosed with EDs.

I have NCS, Pots and GI problems and I have had joint pain for years but it has come and gone. However, now I have been having constant, awful joint pain, all my joints hurt from neck to toes. I have hyper joints. My shoulder and hips pop out of place. My pain has become so bad that I'm searching for the reason they hurt so bad. My doctor put me on gabapentin but it is not helping my pain(What medication do others take that help their joint pain?). In 2008, I tested a low positive for rheumatic factor test. So, my doctor is going to retest me for any systemic rheumatic diseases. While doing research, I noticed I have many of the symptoms of Ehlers Danlos. I mentioned this to my GP and he said he couldnt find a test that tested for Ehlers Danlos. He said he didnt think there was one. However, I thought there was a blood test that tested for Ehlers Danlos. Does anyone know the test that tests for Ehlers Danlos and Is this a test that my GP can give me orders for, or would I have to go to a specialist.

i have been going to doctors for years concerning passing out and ncs/pots symptoms that keep me from doing many daily activities. It has been an up hill battle with doctors, insurance, and disability. after so many years of disappointing doctors appointments (some doctors down right mean) i have high anxiety before and after appointments. (Do others have this problem??) 15 years ago i never use to pay that much attention to medical records but later noticed that many medical records were incorrect. (i now keep a file of my medical reports to take with me to all new doctor appointments, so they are available) I have called doctors concerning this problem. Doctors say they remember my visit and yes the medical report is incorrect but can not change the report. (some will not change the report at all, some say that will put a letter in my folder that i did have those symptoms, i have passed out since last visit or i was taken off or put on that medication) Doctors always use the excuse that they have limited time with patients and do the best they can with that time. I dont understand why so many medical reports are incorrect. Dont doctors want these reports to reflect our illness, symptoms, what was discussed in dr. visit ,and treatment. Also, these incorrect reports have caused me unneccessary problems with other doctors, insurance companies(covering types of medications needed), and disability. I love my new doctors. they have been really trying hard to help me (i have mixed emotions because this has happened before and then doctor cant fix me and becomes mean or gives up on me). This visit i was given medical report before i left. I read it while husband went to restroom before our 4 hour drive back home. it did not reflect our visit at all. it said under history of symptoms no chest pains, no palpitations, no numbness, no sweats, no anxiety etc. and i have all of these. Also they were discussed during visit, and some i was given new meds to try to treat. I tried to speak to doctor right then, to get this problem taken care of, but even 5 minutes after visit was i unable to even wait to talk to dr that day. (Receptionist was rude and degrading about the whole thing). Doctor called me back next day (which i was surprised) and she was polite. she said she remembered discussing those things but only has limited time to write reports. she said other doctors and insurance would know i have those symptoms due to diagnosis and treatment. she said cant change a report but would put an updated letter with explanation in my file. in any other profession an incorrect product would be unacceptable. why cant they change an incorrect report? Question- i know i hold doctors to high standards and this is a big concern that has cause me a lot of heart ache and anxiety. Am i being to picky about medical reports(seems like a battle I cant win)? Do other people have this problem? I have just had so many problems with incorrect medical reports keeping me or making it hard to get help i need. i dont understand why doctors dont see the importance of them reflecting correct information, due to the fact that those medical reports are the only things that other doctors, disability, and insurance have to base of health care on because they were not in our doctor appointment to know what was really said.

i have had this illness for 15+years(started going to doctors 15 years ago to figure out what was wrong with me). back then people really didnt understand, they thought anxiety at first, then dozens of other diagnosis. family members and friends said that i could just wish it away or work though it with a positive attitude. now after years being diagnosised with ncs/pots and the pacemaker reports of how it affects my heart people understand but easily forget. i have been trying really hard not to complain. i know people get tired of hearing about it, even if they ask. i can hear relief in their voice if i just say im ok. just a few days of not talking about symptoms and all of a sudden they think im better. They start making request of things, they know i cant really do. or say oh! i thought u were just having a lazy day the other day, when really i couldnt stand up or get out of bed. double edge sword, to express symptoms or keep them to myself. it is the same with people who im around a lot and i think they really understand. if i felt better 1 hour ago, they dont understand why i cant get up and fix myself something to eat or get a drink now. they dont know how i feel could change so quick. other people dont understand because they only see me on my best days. i think i need to change my vocabulary to explain myself better. instead of im tired i should say physically exhausted (unable to even lift my arms) i have the problem of trying to minimize my symptoms or problems. instead of dizzy today, i should explain i cant get out of bed. i dont think anyone without this problem can really understand ,but it hurts the most when people you are close to say things or dont understand. if they cant understand, how can anyone understand.

i dont react very well to medication and was willing to try anything. I am on my second type of pacemaker in 3 years. the first one medtronic(which now sits in a display cabinet in living room, only had it for 7 months and dr. said it couldnt be donated, so i wanted it back). Next pacamaker was a biotronik, which has help lower complete syncope espisodes, still cant do many normal daily life activities( due to chest pains, numbness, fatique, confusion, sweats, gastro problems, vision problems, anxiety, joint pain, plapitations, and graying out, etc), but i will take any help i can get. the first dr (who i researched and got references from friends) really messed me up with pacemaker. pacemaker was wrong type, leads in the wall of my heart, horrible scar that kept the pacemaker from working correctly and wrapped leads under pacemaker that made it stick out from body and new dr said another week to month and it probably would have worn through my skin. this new pacemaker has been the only thing that has given any small amount of some relief. This illness is horrible and so misunderstood since many times our appearance is fine and on good days we are smart people. but it takes a horrible toll on us mentally and physically(somedays cant get out of bed or take care of myself). the only thing left is a sense of humor, sometimes have to laugh about it instead of cry). this is many times misunderstood by doctors. i wish u luck with pacemaker decision. research it carefully and then just wish for the best. they recently put me on 3 new meds. i am keeping my fingers crossed that the help me instead of making me worse.