Accepted to Mayo after 3rd try!!! Dr Whiteman

[DawnA]

Hi I have not posted much lately. Some of you may remember that I was denied a Mayo appointment on two occassions, also that I may have a mitochondrial disorder. I got in through the back door...kind of. I got the name of a Dr. through a friend from mitoldies. Dr Whiteman is not even listed on the mayo website. He is a genetist. Last year his nurse told me I need to send my chart and a referral. I di not do this since I had already been denied. This time I told her the results of my muscle biopsy and they set me up for an appointment on Jan 13th. I was soo excited!!!

My muscle biopsy came back abnormal. It showed mitochodrial abnormalities and metabolic issues. A possible CPT deficiency. My neurologist boched up like usual and did not take enough muscle to test for everything. SHe said I have an enzyme deficientcy but it is not worth looking for. She told me CPT deficiencys are common among the general population. I do not know where she gets her information. But all of the reading I have done says it is rare. I just think maybe she does want to admit that she was wrong. See she diagnosed me with a psychological disorder and would not budge until other Drs got after her. The story gets long.

I am sooo sick of Drs and fighting the system to prove that I am sick. I am really excited about Mayo yet I feel depressed and very afraid. Like many other s I have so much difficulty in the healthcare system. Please keep me in your thoughts and prayers for this appointment that everything runs smoothly and Dr Whitemen is good listener. ALso that I am able to communicate and prepare myself for an appointment. To me, a Drs appt is worse than a job interview!!!!!!

Just a little anxious!

Dawn Anich

[Ernie]

Hi Dawn,

Congradulation on your acceptance. I know how hard it is to get in. I have a friend who is there presently and she says the doctors are nice to her. She also got in by the back door.

I think that the most important thing is to get in and once there you manage your way through.

I heard that they do thorough testing.

Good luck and congradulation again!

Ernie

[DawnA]

Thanks Ernie! I guess this tells people to never give up. I am very determined to find answer, just a little burned out fighting.

Dawn

[Eillyre]

Dear Dawn,

Yay! I'm so glad to hear about your success in getting an appointment. I've been waiting to get into NIH, but it's taking too long, so I've just started the Mayo process. I may be able to get in the back also -- at this point I just need to be seen by someone with a lot of experience in dysautonomia & POTS.

Sorry to hear about the scuffles with the neurologist! I had a great neuro, who has since moved out-of-state, but have had very stressful and frustrating experiences with some of the other doctors I've been dealing with. It's taken over 6 months for my cardio to really understand that yes, my condition is severely disabling in terms of lifestyle. I don't know how that was not clear from my continually telling her that I had to move back in with my parents, had to stop working (ballet dancer), had trouble getting breakfast ready for myself ...you know the drill!

Try not to stress about the appointment -- I've only heard really good things about the doctors at Mayo (although I'm told that follow-up is not their strength), so I'm sure this is going to be helpful visit. I would suggest getting all of your records, test results, etc. well-organized so that the doctor's time is spent talking with you rather than wading through a formidable pile of paperwork. Maybe it's just the perfectionistic tendencies surfacing from my gene pool, but having a very tidy, easy-to-consult medical file always makes me more confident about an upcoming appointment. Someone on the forum (don't recall who, off hand -- everyone has been so supportive!) suggested keeping a binder with separate tabs for various sections (neuro tests, cardio tests, neuro consultation notes, meds, medical history, etc.) -- that's what I'm working on putting together now.

I can sympathize with your dread! I can recall big auditions that I enjoyed over new medical appointments. Hope you find some answers -- I'll be praying for wisdom for Dr. Whiteman and peace of mind for you. Safe travels!

Angela

[DawnA]

Dear Angela, Thanks for the words of encouragement! I am sorry to hear about your not being able to do ballet anymore. That must be hard. I am not able to work either. As far as my medical records go, i also like to have everything in order so the Dr does not have to waste time paging through the papers. I had mine in a binder with dividers like someone had suggested. Unfortunately, a Dr wanted to copy the binder and said he would return it to me at my next appointment. I had a very hard time giving my binder up. I never should have because I have not seen it since. However, you got me remotivated to try and get as many files together as possibe. A medical college that I go to has totally lost my chart and I have not been able to get anything from them, so I feel very anxious about not having my binder. i have been to too many appointments with no records!!! What a waste!

Take care,

Dawn Anich

[MightyMouse]

Wow Dawn, good for you for continuing to advocate for your health I hope you get help at Mayo.

Nina

[DancingLight]

Dawn,

first, a big ugh on that dr. never returning your binder. i cannot imagine having to start over on that (i'm having enough trouble getting motivated to get all my medical records organized the first time around).

also, sometimes a 'back door in' is the only way in. sad but true. i hate to be such a cynic. i just read an article in u.s. news and world report about advocating for your health/health care if you are sick. it basically said the way to the best care is through a connection. they said, is it fair? nope. is it a reality? yup. hopefully, the geneticist will take you seriously and then you will get sent to other places you need to be there too.

i know it takes a lot to get psyched up for a big appt. i hope you get some answers. and afterwards, pat yourself on the back for fighting so hard for yourself.

emily

p.s. angela...never got to 'officially' welcome you to the site. but i have been reading your posts and they are always beautifully written and full of wisdom. i was not a 'good' dancer, but loved it so much. so, i cannot even begin to imagine how much more you miss it having been a professional dancer! are you hypermobile too? just wondering.

[geneva]

You have tremendous patience and your persistence is admirable! I am glad that you have an appointment and I think you will find Mayo takes good care of you during the testing etc. But do take plenty of magazines or cds to listen to in between appointments.

I really hope that you are able to get some answers.

[Eillyre]

Dear Emily,

Thanks for the welcome! I have to admit, I feel like we've already practically met -- I've read so many of your posts (very nurturing and always good for a smile & laugh when I need one! )! I am so thankful that I was able to find this site! You have all been such an encouragement to me. Yes, it's been a very tough 8 months...I almost feel guilty saying so knowing that the rest of you have gone through years of this craziness. But my career was really taking off, I was getting approached with job offers without having to audition, enjoyed city life...and most of all, I just loved to get lost in music and dance my heart out.

Was I hypermobile? Oh, I wish...how I wished! Standing at barre with people like Paloma Herrera and Julie Kent in class at ABT could be a bit discouraging if I was having a bad day...I'd see my positions and think, "Hey, that's no too shabby." Then I'd see all these other legs miles above mine, and feel like crawling away behind the piano! I have beautifully arched feet, though, and a very flexi back! There is some justice in the world!

Hopefully, in a few Nutcracker seasons down the line, I'll be back onstage -- or even just back in the studio -- or walking around the block?!

Thanks again for the welcome!

Angela

[DawnA]

Thanks for all of the wonderful replies...Nina, Emily, geneva, and Angela!

Angela, when you are on stage doing the nutcracker we will all be there maybe not in body but in thoughts. I hope and pray that your POTS is shortlived and caused by a virus. You have so much passion. It is great to hear a young persons dream. I hope your dreams come true.

What keeps me pursuing this is my children. Ineed more answers for the sake of my children and their health issues. Most of all I need more information for the sake of my grandchildren. I have learned the hard way in life that usually my gut instinct is usually correct. I will not let any Drs tell me how I feel or should fee.

Emily, thanks...I am at the point where I have lost my patience. I no longer am messing with any Drs that do not take me seriously. I gave my neurologist too many chances...shich other Drs have told me. I missed out on going to the best neuromuscular Dr in the Midwest because she would not give me up as a patient the good Dr was her associate. He would not take me as a patient without her permission.

I am feeling very positive right now about seeing Dr WHiteman at Mayo. At least my evaluation will be thorough. I have been told he is very good. I wonder if I will end up in the neurology dept. They denied me on two occasions. I wonder how long I will be there. Unfortuanately my appointment is on a Thursday.

Dawn Anich

[yogini]

Dawn,

Congrats on getting an appointment at Mayo. It looks like your persistence paid off. I had a really positive experience there and I hope you do too!

They usually mail you a schedule with a bunch of appts, although the doctor may change/add to the schedule once you get there. You can call and ask if they would be willing to schedule autonomic testing and an autonomic neuro apt for you. You can also try to get squeezed in while you are there, which is a bit harder.

Good luck,

Rita

[DancingLight]

angela,

thank you for your kind words...i am glad i can make you smile!

i asked about the hypermobile thing b/c i read about a connection one time b/w dancers and people who are hypermobile or even had ehlers-danlos III...and then there is a connection between the EDS and POTS...so that is why i asked! but i guess that doesn't fit you huh?

please do not feel guilty about complaining...you have a LOT of loss to deal with right now...and the beginning of this all is so tough. being able to move in your body and living to do that....then having that taken away? that's a BIG deal...so, never feel like you have to minimize that.

one thing that i will say...thank goodness you found this site early on in your illness! and that you got diagnosed quickly. those are two things i wish so much that i had had early on...

sounds like your fellow dancers at ABT are hypermobile but not you huh? well, for POTS that is a good thing b/c the EDS can make symptoms harder to treat! there, how's that for justice? oops, airing my dirty laundry here.

i'd better stop before i stick my foot in my mouth anymore!

here's hoping for you to be able to walk around the block...and then DANCE!

have you read the DINET newsletter that just came out? you must read StaceyYount's poem on dancing...it is perfect!

Emily

[Eillyre]

Hi Emily! I did get to read Stacey's poem about dancing again. Boy, yould I identify with everything she was relating! I could have been dictating it to her! Talk later!

Angela