Specialist Appt. On Monday. Should Be Excited, Nervous Instead

[jenglynn]

I was diagnosed in July with POTS. It has progressed terrible to where I am now. Multiple syncope every day. 3 head injuries and concussions. Tachycardia is constant and out of control. Same with OI. Not to mention adrenal surges, mental cloudiness, dizziness, and everything else we face. I was recently hospitalized for several days and my hospital could not treat me and said I needed to be seen at a major medical center.

I live near Rochester, MN but my insurance denied Mayo Clinic and approved me to be seen at the University of Wisconsin, at Madison Medical Center. I am seeing someone in their autonomic dept. but I have searched and it doesn't seem like I can find anywhere that he has treated anyone with P.O.T.S. I am sure he has, but there is very little mention of it anywhere on their website. He is actually an electrophysiologist/cardiologist and very focused on stem cell research. Because of the "severity" of my condition according to my cardiologist they were able to get me in very soon.

I guess I am nervous about seeing yet another doctor, in a new facility and starting all over. Telling the whole story and afraid of treatments that he may use that I may have tried that haven't worked but he insists on. Or things that DO work for me that he may not agree with. Trying to explain symptoms and going through more tests and having another doctor not listen to me, not hear me, or worst of all, not be able to help me. I SHOULD be looking forward to this and maybe getting some answers but instead I am just apprehensive, anxious and nervous. It took me forever to get someone to listen to me in the first place. What if he thinks that all I need to do is exercise and that's my problem? Or who knows? I know I need to have an open mind and just hear what he has to say but I can't help feeling this way. I feel like the medical profession has let me down so many times. Just can't get past this anxiety. Any words of encourgement would be greatly appreciated. The past month has been so difficult to get through with the worsening of my POTS symptoms, syncope and head injuries.. I just feel fragile. Thank you all for listening.

[anaphylaxing]

I know what you're saying and can relate.. Part of you feels like as bad as things are, maybe they're not as bad as they COULD be if you see someone new. But look, just take it one day at a time. Don't get too ahead of yourself. See the specialist and try to go in with no expectations. Tell them your symptoms, see what they say, think on it and go from there. They cannot force you to do anything. They might be great; they might not. They might understand. They might be useless. Time will tell. More information can't hurt.

I say it to you and to myself because I find doctor's appointments to be one of the most stressful experiences of all these days. I think I get my hopes up so much and am so affected by what they say. I'm trying to set my emotions aside.

Good luck and keep us posted!

[potsgirl]

Just a suggestion, because I've been there, too: If possible, bring someone along with you to listen to what the doctor says. I usually take in a list of questions and my husband/friend to make sure I'm hearing things correctly because I can get so worked up over a doctor's (especially a new one) appointment. Anaphylaxing also has some good ideas. You don't have to do anything you don't want to do, and try to keep in the present.

Please let us know how it goes~

Jana

[rubytuesday]

I sure understand your plight. I went thru to long awaited to somewhat infamous genetecist in our area for official confirmation of my EDS III yesterday (EDS II diagnosed in 2005 and again in 2011 by cardiac specialist well versed in EDS III, attributing some of the blood/fuild pooling in feet and legs from the weakened muscle/venous structures from EDS). I was told genetecist would spend about 2 hours with me, his staff told me he'd examine my scars, measure wing span, etc. He did none of those things--just looked at hands riddled with arthritis (said pain was EDS rather than fibro), fingers were positive as were thumbs on maneuvers. He had me bend over to touch my toes (when I'd told him my pain was high in the hip where glutteal muscles/tendon were ripped off the hip bone 7 years ago and I have the fainting--with fewer warnings and bending at waist is a no-no--he said he knows my cardiac specialist). Still I did it--thankfully not passing out but having to steady myself w/ exam table beside me. He told me it's very difficult to dx someone my age (mid-50s) with arthritis/autonomic nervous system failing as some of the things could stem from that. He said it was most likely yes, I do have EDS III but without more big joint dislocations he couldn't give official diagnosis--then turned around and told me to have all g-kids, kids, sibblings checked whiile young. (What doc is going to 'screen' those test when some close relative has a very probable diagnosis--no ins. would auth some of those screenings without definitive). DS's dilated aorta and GFs passing from ruptured abd aorta was concerning link of ?Marfans. All the wounds dehiscing with surgeries, deep, elongated tears with childbirth and with bowel movements, etc. could or could not be?). Most likely is but can't diagnose definitively. I was told he would need to measure my wingspan and examine transluscent skin and skin that was stark white in large areas, cuts and bruises and rashes. He never had me disrobe. My weight had dropped to 91 lbs fully dressed and without my water pill. Gastric motility issues could or could not be EDS compnent or other autonomic nervous system failure related. He felt autoimmune dis. involved--despite extensive testing repeatedly being negative and he offered no suggestions. He told me with dx of EDS III, he instructs his patients to do what I'm already doing so no need to add another doc and dx into the mix???

I was flabbergasted to say the least. My appt. was at 11:30, staff started with me early, by time they had all their entries in computer and genetecist came in to see me, it was after noon. He said as he walked in the door, without laying a hand on me that 'you're probably not going to like what I have to say here but you fit into EDS but at your age, with the arthritis and ANS failing, it's just too hard to give a definitive diagnosis. I was home before 1:30 and it takes over an hour to get home. Honestly I think I was cutting into his lunch time. So I have to treat myself as EDS III but without his official diagnosis. I was thinking about highlighting exerpts from his book that were applicable to me and send his book back to him along with a letter suggesting he might benefit from a refresher course, unless things have changed since his publication.

I was excited to go but didn't have high hopes as I've been referred from specialist to specialist to specialist to specialist--all who think it's nothing in their area, but something going on, or part in their arena, or need yet more opinions. I am so done.

I wish you the best on your visit. I had DH with me but he sat quietly as he was just in a hurry to get back to work. He said, well you came for an opinion and you got one. I said, yeah, that it most likely is EDS III but can't give definitive so what does weight does that hold among the medical community who see me. The genetecist told me to keep warning surgeons/dentists/orthodontists of wounds dehiscing, and anesthetists of problems w/ anesthesia and good rheume (been to 3--closest one, longest one retired, 2nd one near retirement, and third I'd seen charges you a fee just to be her patient). No thank you anymore. I can't take NSAIDs and short term prednisone helped the crippling feet, ankle, hand pains. We live in boonies and I have alot of specialists I have to see with regularity and don't need more drives farther away. I just give up.

[HopeSprings]

It is daunting, I know. I go in with a timeline of events, a list of questions and a list of symptoms. If I didn't have it all written down, I would be lost because my story is so long and complicated and I have trouble thinking and articulating - not a good combo. There's pressure to spit it all out in the first 5 minutes and that's hard to do! As far as getting your hopes up - well it's hard not to. We keep hoping the next Dr. will be able to help - it's only natural. Try (as hard as it is) to keep your expectations low and then if he's brilliant, you'll be pleasantly surprised! I'm curious what he'll say about the Orthostatic Hypotension, whether it can co-exist with POTS or if this symptom points you in another direction. I hope this Doctor will have some answers or you - let us know how it goes.

[jenglynn]

Thank you all. I feel better. Your suggestions were all great. Low expectations. Write everything down. If he turns out to be wonderful, then great. I do NOT HAVE to follow his suggestions if they don't seem to be a good option. My husband is coming with me and he is the most protective person in the world over me so I know we won't be leaving there without SOME things answered. I started my list and am adding to it all day and will work on it tomorrow.

At this point, I feel so disabled. The constant syncope has me a prisoner. Even crawling on my knees today I had a syncope incident and hit my head on my bed frame. Luckily, just a black eye but nothing serious. I am glad to hear that I am not the ONLY one who feels this anxiety before an appt. with someone new. Going through the whole scenario again with a "specialist" and you NEVER know what to expect. Compassion? Rarely. Condescension? Likely. Skepticism? Usually. Impersonal and Indifferent? VERY likely. If I go in expecting this and receive anything helpful then it will be a great success. At least I am already diagnosed so I have that going for me. I know it is going to take me some time to get out of this and rehab from this awful flare but I am ready to do whatever I need to do so that I can be as much myself as I can be. I know that P.O.T.S or whatever I have is probably not going away but all I want right now is functional. I will keep working toward the next step but one day at a time.

I love that I can post here and you all understand how I am feeling. A friend posted something on my Facebook wall today trying to give me some strength about this appt. and my struggles... I will share it with you because it helped me. I will keep you all updated on the progress and let you know what the services at UW-Madison are like. I have not heard mention of them on this board thus far so maybe I will find another really positive place for us to go for treatment.

I decided this would be my new motto. Yes, it will be hard. Yes, it will take time. But the beginning and the end really says it all. "It will be hard and it will be worth it." I know that the doctors can only do so much, but I have my part to do as well. I feel like this is the fight of my life and I am not giving up... because I want it (my life) back!!!! Thank you all, Jen