Monday, June 7, 2010

To see more doctors, or not see more doctors???

I have been trying to decide recently whether I should go see more doctors or not. I have mildly (maybe 10%) improved since I returned from Mayo on April 1st. The neurologist gave me the treatment plan of medications, lots of water and salt, and an exercise regimen.

So why should I go see more doctors? Well, there are a few reasons. First, the cardiologist at Mayo as well as my cardiologist here think that there is something more going on other than just POTS. My cardiologist has been a great advocate for me. When I returned from Mayo, he was surprised to hear that that's all they found. Both of them stated that I should probably see a neuromuscular specialist. Secondly, my muscle weakness and pain is not getting any better. The aching in the muscles around my hips gets really bad with minimal activity.

I did the exercise bike for about a month after I returned from Mayo. I quit because I wasn't able to increase my time on the bike like I'm supposed to, and it was just making me feel awful. If I exercise, I can't do anything else that day. Therefore, I have chosen to help my husband with caring for my children and chores around the house instead of exercising for 15 minutes each day.

So why shouldn't I go to a neuromuscular specialist? I guess I'm afraid it's just going to be a waste of more time and money (especially the $ part). I would really need to go to someone at Mayo since they already have all of my tests, ability to consult with other physicians including the ones I've already seen, etc. I have checked into local docs, but the ones that I would go to don't have appts for months.

The things that keep going through my mind... What if they still don't find anything? What if I'm worried about something else being wrong for no reason? However, if something else IS going on, I would like to know about it now so I can start treating it now.


Teresa @ ♥ Too Many Heartbeats ♥ said...

Hi Robin,

I saw that you became a follower of my blog and wanted to stop by and check out your blog. I'm SO very sorry to hear that you are dealing with this nasty monster called POTS!

I am really glad, though, that, like me, you received some kind of diagnosis fairly quickly. That just does not happen very often, as you've probably learned. I'm also really happy that your local cardiologist is a great advocate for you. I've found this to be key to almost everything you will endure as a Dysautonomia survivor. You MUST have at least one physician on the local level who is willing to advocate for you. I am blessed to have an amazing cardiologist AND PCP who help me with whatever I need. They helped get me into Vanderbilt's Autonomic Dysfunction Center very quickly after I became ill for further assessment and exact diagnosis. Plus, they, and my Vandy doc, were absolutely crucial in my getting approved for SSDI on the very first attempt!

I have truly been blessed with an amazing circle of doctors who have gone above and beyond the call for me. Unfortunately, even after ALL their hard work, I still remain homebound and bedridden for the most part. I have tried SO many different treatments but without much success. However, it is definitely not for lack of trying on my doctors' part!

The one treatment that has worked the most for me has been IV fluids. They do help keep my blood pressure up and keep me from passing out as much as I would without them. My PCP is the one who advocated for this and writes all my prescriptions for them. He also referred me to a surgeon to have my port-a-cath placed after all my veins failed. It has been a long process but I know I still have a long way to go. However, everything goes so much smoother knowing that I have lots of people in my corner.

Robin, I will keep you in my thoughts and prayers. I can not tell you what to do about going to the neuromuscular specialist. However, I can say that I would do everything in my power to figure out what was going on - to the extent that my family could reasonable afford it. As you said, what if something IS going on and you could be treating it now? I would also definitely try to stay with the same group of doctors who already know your history. The only exception to this rule would be if they gave you reason to believe they no longer had your best interest at heart.

Please feel free to email me if you have any questions. I am always here and answer them fairly quick unless I'm having an especially bad day/week. :0)

I hope you are having a 'good' day!

{{Gentle Hugs}}

Teresa <><

P.S. I'm not sure how much you looked at my blog but I have a TON of resources listed there. Just look at the top row of links listed on my navigation bar and you will see them there. I have links for 'RESOURCES', FAQs, MUST READS, etc. Check it out if you have a few minutes. :0)

♥ Too Many Heartbeats ♥

Robin said...

Thanks for visiting, Teresa! And thanks for the comment. I sent you an email about this also, but I'd like to know how you got approved for disability on the first attempt.
I have read some of your blog and have also checked out other blogs that you are following. It's great to hear other people's stories and experiences with POTS/dysautonomia.