A few months ago I went for extensive balance testing.
I have horrible oscillopsia and no one else here seemed to have it, so I thought that maybe that symptom was due to inner ear disorder/malfunction. So I dragged my butt to Phila******a and spent a few hours getting all sorts of tests.
So the guy I follow up with is one of those "top guys in the nation" for balance. My follow up appointment was 5 or 6 weeks after the initial testing.
Well, my stupid Lyme infected brain forgot all about the follow-up. I got a phone call to confirm my visit and to bring all my medicines (That would what ..... 14 bottles?) and all my previous test results and scans and films and blah blah etc, etc.
I freaked. I don't even know where my sneakers are let alone MRI films from last year. I can barely keep track of my current treatment and receipts and test results from my LLMd let alone test results from pre-lyme stuff.
I asked to reschedule. His next available appointment was for 7 weeks later but I took it anyway.
Again -- my dumb brain completely forgot and the next time they called to confirm I freaked again and rescheduled for 8 weeks later.
AGAIN this happened! I can't comprehend or handle running around my pig sty house looking for test results and brain scans. I can't remember if I got a referral from my primary and if the referral covered 1 visit or 2.
So last Friday I get another call reminding me of my appt and I just cancelled without rescheduling .... I gave up.
Now I feel guilty because I'm wondering if I had kept this appointment, would this doctor have been able to help me at all? What if there is a cure for my shaking jiggling vision and I'm suffering in vain?
I know this was long; thanks for reading. Felt good to get this out though I still feel sad and defeated.
I know we've talked about this on another thread, but I have these problems too. Your post reminded me that I am also supposed to go back for a follow up with my ENT who is also one of the nations top balance and vertigo guys. You have motivated me to blow it off! tee hee-just kidding.
I know my issues are from lyme, or Babesia-which can cause the imbalance without true vertigo. I am hoping that with treatment this will get better, but so far no luck. In fact it is one of the things that is not getting better. I think a lot of my balance issues are caused by my visual issues, the biggest one being the floaters. I was "playing" with them just today. If I turn my head real quickly "they" follow a few seconds later. Initially I thought this was dizziness, but when winter came and it got snowy and I could really see the floaters I realized that that is what is making me feel dizzy. We just need to find out how to fix those. I am going to ask about the treatment for Babesia that sleeperwoken mentioned. Zithromax/plaquenil/flagyl I believe. I am convinced that is what is causing my problems.
-This is me constantly feeling like I am on a cruise ship, which by the way sounds to me like hell on earth...
i know so much how you feel so my heart goes to you honey
i would drop him a line explaining everything and say how bad you relay are and if there was anything in the etsts taht he was actually worrried abouut could you possibly have a phone consultation untill you improve.
i also erase when i cant get it right but you have put os much in this already and if tehy deal with sick peopel they will understand.
I know what you mean about feeling defeated. Things that are no big deal for others are like climbing a mountain for us. I can totally relate. I am so overwhelmed when my kids get home from school with helping them with homework and not to mention 3:00 is crash time for me, that I get so tired, and overwhelmed I get dinner on the table about 1/2 the time, and when I do it is so late. I feel like I used to be the energizer bunny compared to now.
My friend's baby shower was last week and I so wanted to be a normal person and go. My social life is zero. I am feeling so dizzy from these meds and my anxiety was through the roof about that and dragging myself in that I canceled at the last minute. She understands and knows how sick I am but I just cried cause I felt so defeated.
Jules had a good suggestion about the phone consult. It would be good to hear his thoughts and it would save you a trip in to Philly. You could always follow up with a office visit later when you feel up to it, but atleast you'd get some info now.
Frango - I feel like I'm on a cruise ship too! This is a cruise to you know where. I describe this swaying, unsteady feeling from these meds like being on a boat. As if my problems with balance weren't bad enough before. I'm hoping my body adjusts as I feel the meds are starting to kill something and my dose is already so low. I'm slightly less stiff. I used to be able to get around my house without my cane but now I am just holding onto walls and furniture with every step. I can't live like this for long, but if I thought afew weeks or months of this would do the trick I would not leave my house (as hard as that would be with kids and all) but we know it's not that straight forward.
I agree with Jules. If nothing else you should see if you can set up a phone consult. I know that doesn't provide him with your data but maybe somewhere down the road you can sit face to face. As Jules said they are dealing with sick people and know it. Maybe once a week you can hunt down one piece of info until you have it all and if you need to give it to one of your kids to put in a safe place so it will all be together.
I also agree with Kim about the meds. I swear I am 10x worse since starting meds for lyme. I did the 9 weeks of rocephin and then never did anything else for a year and now have been on them for 5 months. When will it end?
Kim, I know what you mean about the walls. I am sure I would be able to walk better if my kind of vertigo problems weren't so bad. I know when my feet feel nailed to the floor it isn't the vertigo but I also know if it wasn't there I would walk much quicker and with more assurance. The walker I have sometimes I think slows me down because it doesn't have wheels so I have to move it every couple of steps. I do feel safer with it though. Maybe a cane would be better. Hang in there and someday you and I will leave our husbands in the dust when we go for a walk.
PS By the way Kim I didn't respond to your AHCC thread but meant to. I posted about this quite some time ago because I received a brochure in the mail about it. If you know how to maybe you can key in AHCC and see what I said. I can't remember. I did get Tinuviel's Host defense from New Chapter though. Haven't seen anything yet.
Last edited by Betterdaysforme; 04-01-2006 at 07:19 PM.