How Often Do You See Your Ans Specialist?

[summer]

Many of us have had to travel long distances to be diagnosed by an ANS specialist and do not live close enough to have frequent follow-up appointments. For those of you who have had to travel for diagnosis, have you seen your specialist again? If so, how often are you scheduled for follow-up? Do you have routine rechecks (like anually or bianually), or would you only request to see them again if something came up that could not be handled by your pcp?

Just curious as it has been 2 years since diagnosis and I have had no follow-up with the diagnosing dr. I live more than 800 miles away. I have had some improvement, but not enough. I'm wondering if I should make that long trip again.

[Christy_D]

Since my son's diagnosis, we have made a total of 3 trips to Cleveland(since October). We are scheduled to go back in July. Each trip had additional tests run, trying to figure out the cause of his nausea(decided it is neurological). Our follow up in July is (as of right now) just a doctors appt-no tests are scheduled. I am frequently on the phone with their office, letting them know what meds are working/not working. We try new medications, they just call in the presciption or mail it to me.

We don't have any doctors where we live that we use for his treatment, they have all been uncooperative, so we really have no choice. Even after diagnosis, they wanted his nausea labeled as anxiety. When the doctors in Cleveland said we could get some of the tests run where we live, the pediatric GI here said he would not request the tests. So our only resource is Cleveland.

My son has been sick every single day since Feb 09. He is in bed until at least 2:00 and then slowly is able to start becoming functional. Frequently it is later than 2:00 or not functional at all. So we are putting every effort into getting him somewhat more functional. He is missing his teenage years, no longer plays sports, no longer goes to school, etc...

[MomtoGiuliana]

Summer is it possible to find a local doctor who can help, since you now have a diagnosis? Perhaps an EP, a neurologist or a GP?

I see my specialist annually, but I am stable with generally minor symptoms, and also my specialist is 30 miles away, not 800.

[summer]

Christy - I'm sorry that you and your son have not been able to find a supportive doctor close to home. It is so frutrating to be dismissed or or not be taken seriously even after being properly diagnosed by a specialist. I hope that with the help of your doctors in Cleveland that your son will have improvement, and be able to enjoy his life again. Credit to you for your hard work in finding him docs who can understand and help.

momtogiuliana - I do have a wonderful GP who has followed my journey through this for the past 3 years and continued to refer me until we found a specialist who could diagnose me properly. Actually, I saw a number of specialists in my area prior to traveling so far, including a cardiologist, a neurologist, and an internist all of whom were no help (or worse).

After a year of trying to find someone who knew about POTS/OI, I decided I would not waste my time hoping to find someone close by, and that I would go directly to a doc who specialized in ANS disorders who would do the TTT. He diagnosed me easily, saying it was not even a close call. He gave recommendations for my GP which we have followed. I have improved, but not enough to return to work. My GP is kind and supportive but admitts he does not know what else to try. I just don't want to travel all that way only for the ANS doc to tell me, there's nothing more we can do, and this is as good as it gets (which is a lot better than 2 years ago). The thought of making that trip again is sickening, but I doubt he will make any more recommendations after 2 years without reassessing me.

[janiedelite]

Summer,

I'm in the same boat as you. I went to Mayo, Rochester to get diagnosed and initial treatment. The neuro there was great for testing... he diagnosed me accurately and ruled out any known underlying causes. He also gave great suggestions for non-pharmaceutical interventions that have been very helpful. But the medications he suggested made me either worse or caused odd side effects.

Like you, I have a great GP who helps with the disability paperwork and some meds. Thankfully, I also have a neurologist who's willing to treat my small fiber neuropathy pain. And I have a cardiologist who admits he knows very little about POTS, but will try anything to make me better. I also have a good GI doc. Because I have these docs all trying to help me, I don't feel that I'd benefit much from travelling from Oregon to MN. I've already had most of the testing, and developing a medication regimen is really just trial-and-error. As long as you have a doc willing to prescribe the various POTS meds, it's not worth travelling.

But if your GP isn't willing to prescribe meds (understandable since they are all off-label for POTS), then it might be worth it to go to the specialist again IF he's willing to correspond with your GP after your visit whenever your GP has questions about treating you. Still, your GP might need to be the one actually prescribing the meds in this situation.

I still can't work, either. I'd called my long-term disability company a few weeks ago and told them I'd like to possibly try working 4-hr shifts, maybe 3 times a week. But the job would have to be fairly sedentary, have very little stress, oh and I don't do well with heat, I'd have to put my feet up often... needless to say, I never got a call back from the vocational department!

I've been trying to get as fully functional with medications and slowly developing a med regimen. But I'm to the point where the meds can only help so much before the side effects are intolerable. I'm sorry you find yourself in this situation. I hope you can get proper treatment, one way or the other!

[summer]

Summer,

I'm in the same boat as you. I went to Mayo, Rochester to get diagnosed and initial treatment. The neuro there was great for testing... he diagnosed me accurately and ruled out any known underlying causes. He also gave great suggestions for non-pharmaceutical interventions that have been very helpful. But the medications he suggested made me either worse or caused odd side effects.

Like you, I have a great GP who helps with the disability paperwork and some meds. Thankfully, I also have a neurologist who's willing to treat my small fiber neuropathy pain. And I have a cardiologist who admits he knows very little about POTS, but will try anything to make me better. I also have a good GI doc. Because I have these docs all trying to help me, I don't feel that I'd benefit much from travelling from Oregon to MN. I've already had most of the testing, and developing a medication regimen is really just trial-and-error. As long as you have a doc willing to prescribe the various POTS meds, it's not worth travelling.

But if your GP isn't willing to prescribe meds (understandable since they are all off-label for POTS), then it might be worth it to go to the specialist again IF he's willing to correspond with your GP after your visit whenever your GP has questions about treating you. Still, your GP might need to be the one actually prescribing the meds in this situation.

I still can't work, either. I'd called my long-term disability company a few weeks ago and told them I'd like to possibly try working 4-hr shifts, maybe 3 times a week. But the job would have to be fairly sedentary, have very little stress, oh and I don't do well with heat, I'd have to put my feet up often... needless to say, I never got a call back from the vocational department!

I've been trying to get as fully functional with medications and slowly developing a med regimen. But I'm to the point where the meds can only help so much before the side effects are intolerable. I'm sorry you find yourself in this situation. I hope you can get proper treatment, one way or the other!

Hi Thankful,

Yes, I guess we are in the same boat. I have been so blessed to have a supportive GP who believes me, and has done so much to help. I just feel like maybe I am expecting a lot of him to become a POTS expert. He has tried all the suggestions he has received, and has tried to contact the ANS doc for more suggestions as well. We have not heard back yet. These guys are so busy.

I can relate to having difficulty figuring out how to fit back into a nursing career, where I don't really fit very well! I feel like if I were to be working with all the modifications that I really need, it wouldn't really be nursing anymore. And maybe that's my answer, something else. It's hard because I never wanted to do anything else - since I was a little girl. I worked as a nurse for 20 years, and it is difficult to imagine doing something else.

Take care,

Summer