Genetics Appt Today

[ericaj]

Well good or bad it is here. I don't have much confidence but today is the day
I may or may not get some answers. My Genetics eval/appt is this afternoon at 3:00 and is scheduled for 2+ hours. Needless I am freaked out and very stressed the last few days with thoughts of todays appt and with everything else I have going on. Please wish me luck, these days I need all the luck I can get.

Thank my vr buddies!

Erica

 

[bvdr]

Erica, you sure are in my heart and prayers today. I hope things go well. I'll be watching for your report even if you don't have any definite answers yet today. Be of good courage!

 

[Mary]

Erica,
Good luck today and try not to stress too much. I know that's easier said than done, but maybe it will help.
Mary

 

[Gnusgal]

Just remember, I'm there with you in spirit, even if I can't be there with you in person! You'll be fine. I'll be anxiously waiting to hear how things went.

 

[Ross]

They're going to find that you are a genetic mutation of me!

 

[ericaj]

Heheh! And my family always tells me I was hatched!! J/K Ross!!

Thanks for the postive thoughts - I need to them to overtake teh place in my brain that is busily sending out engative ones!!

Erica

 

[Ross]

The Force is strong in you young Jedi. You will do well.

 

[ericaj]

none yet

none yet

Hi All,

I am back from my appt. It didnt go bad, and my worrying was needless but still I don't feel great. My emotions are all tied up in a bundle and unwilling to be free. The appt took about 2 hours and included the normal stuff. I still have not gotten any answers and it is wait and see yet - but they did send off the tests to check for the Mucoppolysaccharidoses and those will take about 3 weeks to get back. The Genetic Counselor who I seen today with the Geneticist will be on my "case" from here on out. So atleast when I have questions I can ask her if my other Drs. don't know. Apparently there is a treatment though for this MPS if it is what Ido have. If the tests come back negative then it will be on to other specialists including Opthalmology.

Always this waiting game, Always. I wish I could cheer myself up, I should ahve expected to have to wait more time for answers but each new Dr. I always hope will be the one to give me answers.

Down in the Dumps.

Erica

 

[Gnusgal]

Girl, I've been sitting on YM all evening waiting to talk to you and find out how things went! I know you're tired and frustrated with the waiting game, but hopefully the waiting will be over soon. I'm in your corner! Hang in there.

 

[ericaj]

Niki
If you can give me 10 more minutes I have to re-download yahoo

Erica

 

[Nan]

Erica, I am so glad that the appointment is finally over! Too bad that you have to wait even longer now for some results, but at least it is in the works.

Are you feeling better now? Less anxious? Hope so.

Did you like the doc?

Take care.

 

[ericaj]

Hi Nan,

I too am glad the appt is over. Yes, I do like the Doc. he is nice and highly respected by all my other Drs. which is a plus. I also like the Genetic Counselor and since she will officially be on my case another person I can ask questions of.

Had some problems already with the lab work. Yesterday when I went to the lab at the clinic/hospital they only did the blood work and not the urine test. Even though I even told them it needed to be done and the Counselor had the order in the system. So needless I ended up runnig back down there today to do that and guess what an hour after I get home Kim calls (Gen. Couns.) and my blood lab work froze when it was in transit to be mailed to Maryland. (Apparently lab didnt package it right) (Where they do the MPS testing) so I have to have that redone. I love all my Drs. but i'm not a high fan of the Lab at CHW, they seem a little disorganized.

Also talked back and forth with my Pulm. several times today and even she said if the side effects con't. she had other things she could try for me. I wanted to give it more time to work but after yet another bad headache tonight and bad stomach ache - sick to my stomach I emailed her (adn will leave her a message) to switch to something else. When I didnt take the Mirapex this weekend I felt fine (other than stressed out) but when I restarted it last night I woke up with the headache again that got worse t/o today. Gr.. couldnt just one thing be easy???

Will keep you poosted what I hear from her tomorrow,

Erica

 

[gijanet]

Sending hugs...............

Sending hugs...............

I know how frustrated and disappointed you must be. Just know that we care about you very, very much. We will be praying that you get some answers. MOre hugs.

 

[Gnusgal]

GRRR! I hate labs. They always seem so impersonable. Except this one by my house. The lady that works there is great! I just love her. Unfortunately, I usually have to go to a different lab.

As for the meds... Sorry you're having such a bad reaction to them . I hope your pulm. can figure out something that will help you and NOT have any side effects. You're in my prayers!

 

[Abbanabba]

Hi Erica, glad to see your appointment went well.... what a shame about the stuff up by the lab It's frustrating enough having to wait to get tests done, then wait for the results - I can't imagine how annoying it must be when they have to get you to do things again because of mismanagement.

Otherwise it sounds like you've got a fantastic team working on your behalf. I hope they can come up with some treatment options that having you feeling better again soon.

Sending best wishes and positive thoughts your way.....
Anna : )

 

[ericaj]

new update

new update

Pulmonologist is switching me from Mirapex to Neurontin 300mgs 30 minutes before bed, follow up appt still stands for 3 weeks from now. To check on lung stuff and see how this new med is working for the PLMD.

Seen PCP today for those headaches. She wants me to have CT sdcan done of my Sinuses and head - that is tomorrow at CHW at 2:30. Will see her in about a week for results. She started me on an anitbiotic as she thinks I may have a sinus infection vs actual migraines.

Will keep you up to date. Can anyone tell me anything about Neurontin?

Erica

 

[Nan]

Hi Erica,

What a shame about the lab tests. How very frustrating!

But it sounds as though you have got some really good folks working with you, and that is the important thing.

I know that Neurontin is used for RLS/PLMD. So perhaps it willl work for you. Sure hope so. But what is really good is that your Pulm. is working with you in trying to find something that will work and not make you feel bad.

Take care,