Really????

Sitting at work, reading protocol amendments, thinking about updating the informed consent form for our patients...and suddenly there is a tear on the paper. Looked around to make sure no one was crying over my shoulder because surely it didn't come from me! I'm fine today...a little tired, but fine. Apparently my mind disagrees.

What the heck? It's not night time, I'm busy. I look around my office and see on my calendar I have two doctor appointments this week. Really?? Is that what this is about? A new Muscular Dystrophy doctor and a new family doctor (decided when I told my family doc that when I cough I almost pass out and he responded, "that has to be bothersome. try not to cough so hard," it must be time to find a new doc. I've gone to him for almost 30 years). I don't even know how or why my mind wandered on it's own to worrying about the appointments. And now that I'm focusing on it, yes, I am worried. I told the last doctor that my face kept getting numb and he said he didn't see any deviation when I stuck out my tongue so everything is fine. I don't want this one to just blow me off.

Forget it.

Cantstop.

Going to new dr (no matter what kind) is nereve wracking. Especially if you have been "blown off" by a past one. Consider this though, this new dr may be able to really help you with what is going on.

Do you see a neuro at all?

(((((( cantstopcrying ))))))

Bravo to you for leaving the family Doctor that said that to you! Gosh that would make me feel sad to be spoken to like that and especially after 30 years of knowing him. So now you are anxious about seeing a new family Doctor and a specialist Doctor but actually this may be the start of getting things sorted out. Getting the right treatment.

Be gentle with you, let us know how you get on.

Not seperate from the MD doctor. I am always the one voicing the loudest that we have to be advocates for our own healthcare and yet I'm scared to bring something up with him. I was told at the MD clinic once that I may have HNPP, but nothing else was said. Every symptom I have correlates with that but I guess I'm nervous to bring it up. I think I'm partially mourning the loss of the physical person I used to be because these appointments always remind me even more keenly how I used to be and what I can't do now. Sighing.

Peg, thank you for the reminder to be gentle with me. Right now that's hard to do. I think part of it, too, is I will be forced to step on the scale both tomorrow and the day after. I always turn around so I can't see, but I was reading through some old records and in 4 years I've gained 40 pounds and to see it written out is horrible and I can't stand it.

Sounds like you are realizing all of the things that are on your mind about these appts. Good Work!

Hey, I am, aren't I?!?! Hmm, who knew I could be so insightful?! Cool. Thank you dear friend for pointing that out.

((((((((((((((((((( cantstopcrying ))))))))))))))))))))))))))

Sending you some hugs.

thank you gimmeice!! Appreciate the hugs greatly!

Update on doctor appointments:
If I wouldn't have been restrained and probably arrested, I would have kissed the neurologist who is the new muscular dystrophy doctor. He was wonderful and amazing and I've never ever ever met a doctor so human! The exam table was very low to the floor and there were no chairs left in the room, so for about 30 minutes he squated on the floor so he was eye to eye with me. Very impressive. He said that he's sorry that other doctors have blown me off (his words) simply because I don't fit into what they know. My genetic testing had come back negative for the type of CMT that 90% of my family has but no one ever took it to the next step to find out what it is then, just called it CMT and brushed it under the rug. He said that as a physician he owes it to me to find out what's going on and to come up with a treatment plan. He said based on all reports and testing and his strength testing and neurological testing, I have some type of hereditary neuropathy, but what kind is unknown. He said it because it doesn't have a name doesn't mean that it doesn't exist, it means it hasn't been found yet. He ordered MRI of brain and neck to make sure the facial numbness isn't from a pinched nerve, he ordered a pulmonary function test to make sure my lungs aren't affected because I am wheezing, he ordered 6 tubes of blood drawn because the arthritis and thyroid issue are auto-immune related and he wants to check other things in that area. He also ordered new braces for me because mine are breaking. Basically what all that means is someone cares and will put effort into helping. I was so relieved, I cried. I also had to meet with a physical therapist and an occupational therapist. The PT noted how little strength I have in my hands and also noted that when I sit I lean to the right, so she gave me some postural things to do, I got a really long talk on self-esteem (because she told me to do this in front of a mirror and I lost it and said I can't look in the mirror) and she told me that every time I do the thing she showed me, I have to smile because I have a beautiful smile. The OT showed me some ink pens that will help me write smoother and steadier and will be heavy and fat enough. I left there and just sobbed. It felt so good to have someone care and want to help.

Yesterday's doctor appointment was kind of a waste because he was going to order a pulmonary function test, but the MD doctor did that so he has to wait for those results. He wanted to give me an inhaler but because of my heart rate going so high, he didn't want to. I had to have a chest x-ray and then follow up there. He was very nice and spent about 40 minutes going over health history and issues and what not.

So all in all it went very well. I still am mourning my previous active life, but now there's hope that even though I'll never get it back, I may actually have some relief from the pain.

Thank you all for your support and for encouraging me and helping me.

Very, very good news!

Oh how totally AWSOME is that! I cant tell you how very pleased I am that you found someone that looked past what is may be and is looking for what it is. Even if they dont have a name for it. Keep you head up! You have a lot of friend and memebers caring about you!

thank you so very much!!!