Ridiculously Difficult To Get An Appointment?

[imapumpkin]

So I have been trying for weeks to get an appointment with a dysautonomia specialist. First they tell me I have to fax over all my information, diagnosis, Dr. notes so he can "review it" and then get back to me to see if he will see me and then they will contact me and make an appointment. I have called several times to follow up and was told they were supposed to have gotten back to me last week. When I called today, the rather rude receptionist told me they're "trying to find a time" and will get back to me. I asked her if she had a timeline or a ballpark estimate of when they would be in touch with me. She told me "he has to review your information and they need to find a time because he's booking really far out"...I was like "No, I was asking when you thought I might HEAR back not when you think I might get an appointment" and then she just repeated the same sentence like I was an idiot.

I've had a crazy boatload of medical issues throughout my life and I've never, ever not once had to wait weeks and weeks just to hear back about and appointment. Even in the physician is booking very far into the future, a receptionist or secretary will just look at the calendar and find an available date in a matter of minutes. I've seen postings on this forum that this doctor's office is notorious for not getting back to patients,***** it, and I called Dr. Hohler is Boston instead and will try and get an appointment with her. I don't understand what takes so long about just getting back to me about an appointment. Every day that passes that I don't have an appointment is one more day I can't work, one more day I have to worry about losing my health insurance next year, one more day of wondering how long it will be until I can get treatment and help and answers to my questions. Life's too short for this crap, especially when you're sick and already feeling like you're living a half-life.

Sorry, I just had to get out my frustrations. I'm sure they are in no rush to see me, but I sure as heck am in a rush to be seen by a specialist so I can get on with my life.

Edited October 3, 2012 by corina

[westernmass]

OMG I feel you on this!! I had autonomic testing done at Beth Israel in Boston and have since been waiting almost two months to get an appointment! I'm on the wait list... For some reason they aren't setting appointments- everyone goes on the wait list. I call every week and am told the doctors aren't in or there are no spots... No appointments... Call back next week.

very frustrating! Glad I'm not alone (maybe its a mass thing? Lol) but sorry you are dealing with the same.

[arizona girl]

Hi guys, natops just saw Dr. Chemali, in norforlk, va. Isn't that pretty close too. He had a great experience there. Read his posts, maybe you'll have better luck there.

[westernmass]

Same coast, but va is a pretty far hike! Though honestly at this point...

Unless you meant Norfolk, MA?

[arizona girl]

No it's virgina. It looks like he is out of cleveland clinic and has just opened his own autonomic center and is a neuro. I know he was able to do all the standard testing on natops like ttt, qsart, skin biopsy and other neurological testing and labratory. He found that natops had lems as his cause of dysautonomia, after many different doctors who said there was nothing wrong.

Give a google to chemali, there is a bit of info out there.

BTW I'm in arizona and I traveled to grubb in toledo, vanderbilt, and ucla. There not many dysautonomia specialists in the country yet. Many cities have no one.

[westernmass]

Thank you, I will look into him and am willing to travel. I appreciate it.

My issue atm is that I Already had all that testing, know it was "abnormal" but have yet to see a dr and get the full results. Ugh!

[jangle]

It's a symptom of a malfunctioning medical system. Not just tertiary care, which for POTS patients means >6 months to get into POTS specialists but even for regular specialists it's quite a wait.

Case in point, I booked for the first available for my neurologist on Sept 14, and I'm not getting in until Oct 11. So even though I've waited so long, I still have like 2 weeks before I'll get in.

I dislike waiting.

[imapumpkin]

I dislike waiting as well...do you think seeing a regular neurologist in the meantime would be helpful?

as for traveling to see a specialist... i have an HMO so I really can't afford to see someone out of state but if I did it would probably be in CT or NY and I wouldn't go to Virginia because VA/MD/DC is where I got my flare up and a huge trauma in the first place so I'd love to never go there every again (although fun fact dramatic irony--there's a POTS specialist one street over from where I was working in DC when my flare up occurred. Whee.) My guess is I'd have just as difficult a time getting an appointment with a specialist out of state and wind up having to spend way more $$$ that I don't have because I can't work so I'm just going to have to suck it up and wait for one of these specialists to get back to me. I just wish they were a little more professional about it (and less rude). I'm sure it makes no difference to them when they get back to me but it makes quite a difference to me.

[Guest mattgreen]

I have been on a waiting list to see a Dr. in the neurology dept. of the RBH. This dept. has autonomic function testing. Once off the waiting list I will be given an appointment time. This could be a year from that time. It has been 3 months since I was put on the waiting list.

My GP is writing to see if he can move me forward as my condition is deteriorating. It is frustrating to say the least.

It sounds awful but I would prefer I had cancer. There would be no waiting lists and no explaining to unconvinced doctors/friends etc.

[imapumpkin]

matt-- i get where you're coming from with the cancer comment, although i dunno if i'd go that far. certainly i'd rather trade up for a medical condition that the healthcare industry 1) knew a great deal about and 2) knew how to treat, even if the treatment was unpleasant. Last week I think I said I'd give one of my feet to have energy again but of course life doesn't work that way...but with cancer there's a large risk of the disease being fatal. and although dysautonomia i think causes us to live limited, sick lives dealing with the symptoms, at least we can be reassured that it is not a fatal condition.

[Guest mattgreen]

I wish I hadn't written that, I apologize. Just upset and frustrated last night - not thinking clearly.

[issie]

Ha! you guys! Be careful what you wish for. I used to wish for "purple polka dots", instead I got white ones. I have vitiligo which is an autoimmune attack on your skin pigment color. No reversing this one. Thank goodness I'm a very fair, pale skinned girl any way and it hardly shows. But, really. . . .wish I hadn't wished for polka dots.

Issie

[AllAboutPeace]

No worries, Matt! We all understand the feelings that would lead to a comment like that. Pots can be such a debilitating, isolating and frustrating condition especially when you feel like you are abandoned by the medical system. Honestly, I'm not sure what state I would be in right now if I didn't have this group to share with and learn from and the ability to seek answers on my own. I hope things improve for you soon...

[looneymom]

Hang in there. It took three letters from three different doctors for a referral to MAYO. Started process in August 2011 and saw doctor in December of 2011. If you are not dying, the medical field does not deem it necessary to see you. If your gp can refer you to the specialist, you might be able to get in quicker.

[Zap]

Yeah, add me to the list - I want to be able to move on with my life. I'm not making any progress with the local place (being told I won't be transferred between doctors, even though I'm not being treated).

I tried calling to see how long it takes to get in to some other places, and it is a YEAR at some. That is absolutely nuts - what are you supposed to do if this interferes with your ability to lead a normal life, have a job, etc. ? I understand that things are out of control with provider availability, but at the same time I'm trying to get treatment, my disability insurance is somehow able to find quacks to say that nothing is wrong with me (even though they have never seen me) AND that I could work full time, despite weird sleep problems, chronic migraines, chronic pain, etc. The whole process just wears on you, and is unpleasant from every single angle.

[POTLUCK]

I agree with the nonfunctioning medical system. My doctor from 20 years ago ( not POTS ) still answers his phone, tries to find the root of the problem, takes time etc. Now it is all about billing codes, no time to look into things, specialty doctors that only see their specialty or subspecialty even, in an isolated way from other aspects of medicine. The body is a whole, and you can not look at one part in isolation. The primary doctor is not really even willing to coordinate all of this, and thus if you have multiple concerns they are really often just unhappy with having you as a patient. Thus if you can find a good primary to help you are lucky.

It is not about truly deciphering what is wrong with the patient and treating them, it is about biling and documenting to avoid legal concerns.

[comfortzone]

Wow - I'm so sympathetic and at the same time horrified at what I'm reading here of how horrible you've been treated! We've all had 'bad' appt's where a doc belittles you or dismisses you etc..... more than our fair share for sure - but to treat people badly when they are very very sick - with conditions that are known to be dicey to diagnose and treat in the best of times and equipment and testing capabilities ~ is just criminal! Makes me so so angry to read this......

And the sad thing perhaps is that once you get in to a place - and get your diagnosis - ongoing treatment can be difficult - we are literally a huge handful and then some to treat - with frequent trials of different meds, frequent repeat testing sometimes - and also the need for appointments maybe every three months or so! We don't tend to 'get better' where we stumble upon the right med combo on the first shot --- it's trial and error again even with the best of doctors - They need to get a grip and be COMPASSIONATE and KIND and LISTEN and provide HOPE - EXPECT phone calls about adjusting meds - EXPECT phone calls about things tried not working all of a sudden - EXPECT the patient to need revisits ----unfortunately this is normal for us!

If you are 'young' in years the odds are stacked in your favor too however - can't tell you how many times of late I've heard that I could be doing much better had I just not had 'so many birthdays' .... how when you are young and you don't have a lot of age related complications with health - or even just things like higher blood pressure, body weight, maybe even blood sugars .... All these things then limit the options of meds to be trialed - kinda makes you feel sad - I had no idea I had this going on till age 53 or so perhaps.....but not through my own fault - not exactly a text book case I suppose.

So may everyone get in SOON to see a caring professional - and while it's great to find someone - it sometimes takes kissing a number of toads to find a prince - think we've all been there - and even when you find the prince? They don't have all the answers - our illness by it's very nature almost requires the doc to make a long time commitment to you - birthdays don't stop --- patients have peaks and valleys - it's just how it is ,,.. the docs are only human too - as you mentioned - the system is very flawed and if the doc doesn't commit to self-care - well burn out is around the corner and patients will be having to wait even longer yet! I pray everyone that's being put off this way for even an initial appt.. is guided to the best course of action - either moving on to someone else - or have just the right 'words' to get what they need done pronto!