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trice125

Do You Travel To Specialist All Of The Time Or Do You Have Local Doctors That Take Care Of Things?

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I've been to Cleveland Clinic twice but I didn't find them very helpful. I have a local cardiac electrophysiologist but besides keeping an eye on my heat he's not too helpful on any other of my symptoms. Last week I saw a neurologist that he referred me to which told me that after he reviewed my records he could refer me to someone else that specializes in this area which most likely would involve traveling again but he wouldn't be any help to me himself. I have an awesome primary care doctor but she knows this is way out of her knowledge so she isn't much help either. My body and my checking account can't tolerate traveling several days just for a doctor's appointment but I also need a doctor who addresses these autonomic issues. So long story short, Do you travel to specialist all of the time or do you have local doctors that take care of things?

Edited by corina

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That is a tough one isn't it. Like you my GP is great, tries to keep all my tests etc. in one location, but admits it's way out of her realm. I have currently been to the Mayo Clinic and return in October. I hope if I can just pin my diagnosis down a bit better than my GP can work with me and maybe through a doctor there. Like someone else mentioned , I wish you could go one place..like the Mayo and they would admit you for a week or so to do everything needed at once to figure things out and really get to the bottom of some issues...try some meds while you are there incase something goes awry...etc... that doesn't happen so we are left piecing things together. :(.

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Guest Alex

Trice,

I do a bit of both. I am fortunate enough that my specialists are all relatively close to where we live - no more than a 90 min drive. Also having the private phone number of one of my doctors/specialists helped a lot - particularly in the beginning (right after I was diagnosed). It took us a while to find the right treatment and it was quite difficult to tell POTS apart from side effects. Needless to say I was more than grateful to be able to communicate with him :) and he's always been on top of things as far as I'm concerned.

My family doctor is overwhelmed by my situation but has always been open and willing to refer me to the drs of my choice (no questions asked) or to offer prescription refills (if I ever run short).

Alex

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Trice,

Like you I have been to the C Clinic and had similar reaction to it. One good thing that happened there was a lot of testing was done, even if for me it yielded no results, I at least have those tests checked off.

My primary does not know what to do, but she is willing to follow a treatment plan, if I ever get a firm diagnosis and treatment plan! LOL.

I actually had an appt with her today just to check at what has been happening. She does give me suggestions and she gave me her opinion on suggested medication and I guess I use her as a sounding board. I also brought an old test up that was worded odd and she told me it showed I had kidney stones! I never had them before, so she is sending me to a specialist because of this. Ugh.

Like you traveling is difficult and expensive, but if there is a specialist out there that can help me, than it is worth it. I do have to stop sometimes because of money and travel. And to be honest, I took a break the last few breaks from calling doctors, even though I am doing pretty bad right now. I just couldn't handle anymore doctors, I figured I have been bad for this long, a week or two won't make a difference.

I guess you have to decide what works for you. I know I have to find someone to help me or I am not going to be able to function and that is unacceptable. My hope is to find that person no matter how far away and hopefully they will work with me and a doctor that is close by.

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Local - I won't go anywhere else anymore unless absolutely forced to....I just can't tolerate travel- flying is a nightmare and driving is too hard on me. I am quite fortunate to have local MD's who go out of their way to assist me so, I'm definitely staying local.

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E Soskis- I'm with you about the traveling thing. My symptoms have been flared up since we last went to the Cleveland Clinic in the middle of June plus I threw up all the way home which was over seven hours in rush hour traffic.

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I have a specialist (at Mayo Clinic) who is willing to work with/give guidance to my PCP.

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I cant travel at all anymore... I dont even drive on long trips because the traffic triggers so much adrenaline that my sleep patterns that night have me jerking out of sleep, just as Im falling to sleep. Then even if I fall asleep, im up in two hours wide awake, and have to lay there for an hour or more to fall back out...Its all from the over flow of adrenaline, and cortisol that elevates from the adrenaline... that happens in response to anything outside my normal day. I just have to realize I have an illness that requires life restrictions and I have to deal with them...Doctors in this area of medicine really dont have much to give to us yet, throwing meds at it dose more harm then good in my experience, but thats just me. I have a good cardio Doc and a good primary, and they will go along with whatever ideas I have on dealing with this...I cant ask for anything more then that..This stuff can really mess with a brotha's life...lol...And people ask why Im single...lol...

I found a lot of extremely helpful info on Chronic Fatigue sties, they have been at this for a long wile now and have some very good coping techniques.

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