Specialist visit – 2.16.2010

Well latest Dys. visit is over with.  I started the day with barely 3 hours sleep, got up got myself and the girls dressed (no sitter this time), and the 4 of us were leaving around 8.  It was a nice morning. Cold and a dusting of snow on the ground from last night. It’s a rare event around here usually but this was the 2nd time we’d had snow on the ground in the last 4 days!  Anyone who knows me knows that snow is my favorite thing, so it was a pleasant surprise to see it still covering the ground. 
My appointment went well.  I didn’t get to have Eric go back with me to talk to the Dr. like I had hoped, but Dr. Phillips and I discussed a lot. I actually had a timeline of events since my last visit and a list of symptoms I’ve been dealing with since my last visit. I think this helped, especially since my thinking was not clear at all.  We discussed everything on the list and the main things we talked about were my lack of sleep, tachycardia, breathing problems, and mood swings. 
My sleeping has been horrible lately so we talked about the Trazidone and Klonopin.  During December when I was blacking out and going unconscious I had called their office and the nurse said Dr. Phillips wanted me to stop the Trazidone.  And later when I was still not sleeping I gradually came off the Klonopin, thinking it was only for helping me sleep… I was wrong…lol  Found that out today!  I also had put a call into my neurologist about the headaches, and was told to stop the Topamax since it wasn’t working.  This left me only with the Metroprolol.  So that’s what I’ve been taking since end of December.  Dr. Phillips said that I was taking nothing to treat my problems other than tachy, and had she known they took me off the Trazidone for blacking out she wouldn’t have done that, so I’m to go back on the Trazidone and the Klonopin.  Once again I have to start low and build up till we find a dosage that will work.  She added Zoloft to help with the mood swings, said that and the Klonopin would also help with my breathing.  During the time she was writing my prescriptions, the quick breaths that spontaneously happen to me causing the really bad breathing problems at times, spontaneously happened. She turned and told me that was the dysautonomia and that the klonopin should really help that.  This relieved me a lot considering that last week I had so much trouble with this that I literally could not get any air in or out. So now I wait until we find the right dosages. 
As for my heart rate going back up after taking my beta blocker, she added another pill at lunch. So hopefully this will keep me from getting so tired mid-day and get me through the day.  She also told me that the blackouts I experienced were from my blood pressure dropping.  So she asked about my sodium, and I told how when I’m out and about I constantly chug gatorade, and she asked about when I’m at home. I told her I don’t drink as much gatorade when at home, but I drink water. She told me to take in significantly more salt and sodium at home and when I’m not at home.  This should keep my blood pressure from dropping so low and keep me from blacking out.  She mentioned Propel water, but I’ve never drank this and I’m going to try it I think. Right now I drink G2.
Now this was the hard part…lol  We talked about my appetite. How I may not have an appetite for a few days and then how I can’t seem to eat enough.  I told her how I sometimes even forget to eat, and I was told that if it takes writing a schedule and checking it off that I definitely need to eat at least 3 meals a day and she’d prefer 2 snacks like nuts, peanut butter and crackers, etc to keep my energy going.  I remarked that I don’t like any of those things and most veggies and asked what types of food I should be eating. She said low-carb.  Since I’m definitely not a diet person I asked what that would be and she mentioned most everything I eat! Especially the pastas… I have pasta at probably almost every meal! (It’s one of the few things that Eric can cook well, so he does it a lot.)  Now I’m trying to figure out what I can eat that I like, that will be an acceptable food.  This is going to be the hardest part for me I think.  I also have to ride my bike or walk every day for a minimum of 5 minutes.  This might make it easier for me, instead of pushing for 15 minutes minimum. Some days I’m just not able to do the 15 minutes because I feel so cruddy, but I think I might be able to do 5 minutes, and I’ll push to do it if it’s going to help. 
I have lab work to be done also.  I’m getting a full blood work-up, thyroid and hormonal included.  She also gave me the number of a Dr. who’s specialty is hormonal imbalances. She told me to call and get info on prices since I’ve got no insurance.  She also told me this Dr. is retiring soon so that if I’m going to see him I have to do it soon, so I’m going to look into this too.  Especially considering that she feels my hormones are out of whack and majorly affecting me.
I think I’ve covered it all. Med changes – start the Trazidone and Klonopin again, add Zoloft, and add an extra dose of the Metroprolol, and a multi-vitamin.  Get the blood-work done first of next week.  Call Dr. Phillips back in 2 weeks if I’m still not sleeping and other symptoms haven’t gotten better. And I have a follow-up in 6 weeks again. 
So there you have it, my latest check-up. Wasn’t brief, but I’m sure compared to other’s with Dys. it could have been much much longer.  Oh yeah, she also told me I was a classic case. I asked what she meant and she said that I am a classic really bad case.  We talked about how long I’ve felt bad, and I told her I’ve never felt up to speed but the last 6 years have been gradually worse, and I also feel worse now than I did last year when I couldn’t walk. I asked if it would continue to progress and she stated that it shouldn’t as long as we get the right concoction of meds.  I asked her how long it would take to feel better when we do, and she said could be 6 weeks, 6 months, who knows… it just depends on the meds and all.  Oh, and the best tid-bit of today! I asked about if I could ever have another baby, or is it not a good idea.  She said definitely not right now, gotta get better first, but it’s not out of the question later on.  And I could still use my OB and not have to see a specialist OB! So now that I know I still have one dream left to look forward to that at this point is my choice, it’s a good feeling.  To know that at this point, the disease hasn’t taken away every thing that I dreamed of is a happy thought.  I may make the choice to keep my family of 4, but I have the choice… and that is a good thing.  Oh yeah, and on the drive home… the snow had melted and things were back to normal here in Alabama!

…there is always something there if you look that you can be thankful for!

Just want to say first and foremost that this blog entry might be a little confusing at best.  My thoughts are all over the place, and so might this blog be!  But I do hope that it’s coherent enough for you to understand my point! Enjoy!

On Thursday I had my visit with my Dysautonomia Specialist, Dr. Susan Phillips at The Autonomic Disorders and Mitral Valve Prolapse Clinic in Birmingham, Alabama.  I highly recommend this Dr. and this clinic.  So before I even begin to get into my quick little blog about my visit, I’ll list their website here for you if you are looking for a great place to go and an awesome Dr. for your dysautonomic disorder.  http://www.mvprolapse.com  And don’t let the website link fool you, because it’s not just a clinic for mitral valve prolapse but also for autonomic disorders.  So check it out!

Ok, so here is how my 2nd visit went.  I arrived and according to the nurse every other visit I will now I have an EKG, and on the others I will have an Echocardiogram and tread-stress test.  This visit was another EKG and things were ok.  I then was checked over by Dr. Phillips.  And considering that I couldn’t walk or talk the last time I saw her, she said I looked great. :)  So she checked my heart rate and blood pressure sitting and standing, and then we did what I call our chat thing.  It’s different than when other Dr.’s sit back and say in their authoritive tone “Ok, tell me. What seems to be the problem?” *smile*  Dr. Phillip’s does sit back in her chair but she doesn’t seem all above you or anything.  When she asks what is going on it’s a different feeling.  So we talked about my problems sleeping, about how I sleep great for a week or week and 1/2 and then I have about the same length of time with no sleep, and it goes back and forth even on the same dosage of my sleeping medication.  Which for those of you who are wondering I take two .5mg of Klonopin every night.  So some nights I’m sleeping so very great, and some nights not at all.  So she informed me this was completely normal for someone with my particular wiring, and we are now adding Trazidone (can’t remember the dosage) to the mix on the weeks when sleep isn’t on my radar.  We also talked about my horrible time I’ve been having with the migraines, the ones with and without the headaches.  I told her I had no clue what I was having until the neurologist explained things to me.  She told me I’d need to follow up with Dr. Hudgins (neurologist) again for the migraines since that would be his department, but that I could try topamax.  And since I still have a prescription for it from a diet clinic I was trying before everything fell apart (and no I wasn’t taking anything other than that and the b-12 complex shots… I know better and was being monitored by a Dr. who also was the one who did say I should be checked again due to tachycardia). So I’m trying the topamax because they are supposed to be good at preventing headaches. I have a couple prescriptions of it and if it works it will save me the trip to a neurologist and all that cash spent going to one since I’m not insured still.  Besides, if they work it will give me the push I need to get the B-12 shots again… I lost 20 lbs during that time… :)  I have to go back to Dr. Phillips again in January.  And if insurance is active then, we’re going to do some blood work, hormonal tests, and a sleep study I think.  I did ask her what exactly it is that I have.  What exactly is it that is wrong with me.  She told me I didn’t fall into a category.  That I have an autonomic dysfunction and I’m wired differently.  She told me that if anyone asks, that’s what I should tell them, that I’m just wired differently, and that they will probably say “Well I already knew that!”  That gave me a laugh because it is exactly what my friends or family would have said… :)   So I think my latest appointment with Dr. Phillips was great and I feel more optimistic about my future after Dr. Phillips told me she did not see me in a wheelchair in 5 years or anything like that.  She said that she feels that I’m on the right path and that I am already doing much better than I was just 7 weeks ago.  I agree with her.  I am able to take some stand up showers now.  And if I could just get the migraines figured out I might would be able to take a drive alone.  Who knows… But if Dr. Phillips thinks that I’m on the right path, then I trust her.  After all, I’m feeling much better since my first visit with her and her adjustment of my medications.  And for the record, I know it isn’t all Dr. Phillips.  I know that God has had his had on my life from the very moment I was born.  I know he laid out the pathway to Dr. Phillips office door, and ultimately all the ways I’ve recovered are because of God and His graces!  So trust in your Dr.’s but trust in God first and foremost!  Sometimes God chooses to heal us instantly, sometimes we must wait a while, and sometimes he uses wonderful Dr.’s with positive and sweet dispositions to help us until that time comes.  That’s what Dr. Phillips and her staff is to me.  They are my gift from God until he decides to heal me.  And if that time doesn’t come, then I am very thankful for the gift that the paths God placed me on led me too! So there you have it.  My most recent Dr. news and how I feel about it.  Hope that your day is going great, and is full of thanks no matter what your facing, because there is always something there if you look that you can be thankful for!

After all, when I am weak, God is my strength.

Yesterday I had my first visit with a Dysautonomia Specialist.  Dr. Phillips was very nice and understanding, as well as the rest of the staff there.  I will say this, that it is the first time during this whole ordeal that I felt like a Dr. or nurse truly understood what I was dealing with!  Anyone dealing with dyautonomia should definitely find a specialist!  http://www.mvprolapse.com is the link to find more information on the clinic where I am now going.

My appointment was at 8:30 am.  I arrived a few minutes early and didn't wait long.  I spoke with a nurse and she asked me more questions. I had already answered 163 questions on a scantron that I had recieved in the mail.  The questions that she asked me were questions that yes/no answers wouldn't be appropriate.  Her office was nice. She had lots of pictures of children. I'm guessing they were her kids or grandkids.  She was very polite and nice.  I then was asked to put on a gown and wait in a separate waiting area.  Since the gown didn't cover me as well as I would have liked I simply slid my t-shirt on over the gown. I admit that I probably looked silly, but walking with a walker and an open front gown was not my idea of keeping myself relaxed!  My next stop was to have another echocardiogram.  This didn't take long and I was asked to wait again. Then I was taken to the Tilt Table Test. The nurse was a very sweet person. I got up on the table and laid down and she attached some leads and cables to monitor my heart and a blood pressure cuff and then I was strapped to the table.  I lay there and she got a baseline of my heart rate and blood pressure. She explained everything in detail, but not in a way that would be confusing.  Then I began the test. The table slowly tilted upwards bringing me to a standing position of 60 degrees.  You are standing, but not quite standing. I would remain in this position for 10 minutes while she monitored my blood pressure and heart rate, and I was to tell her every symptom I felt as I felt it.  If there was any change I was to tell her also.  During the test my mouth began to get dry and she gave me my water.  I finished all of it and continued standing there.  The last 4 minutes seemed the longest because by this time I was weak feeling and very fatigued.  I'm not sure what my heart rate reached  or what my blood pressure fell to, but I was later told that the Tilt Table did indeed confirm my dysautonomia.  My heart rate climbed rapidly and my blood pressure fell. Not alot but it fell.  I was lowered back to laying down, and it only took about a minute for my body to re-stabilize and all my symptoms dissipated.  She allowed me to take my time getting up and we talked.  We talked about my meeting my husband online, and how long we've been married. We talked about my 2 beautiful girls, and then how all of this summer has been hard due to my body just going all hay-wire.  I talked about how God has been working everything out and that I just have to trust in Him.  She agreed and she hugged my neck.  Not a wimpy hug... but an I care about you hug.  She told me she would be praying for me and that she knew that God was going to take care of this. How often do you get that response from a nurse?  I never have! She was truly a blessing to me!  I then waited in the waiting area for Dr. Phillips.  When time came for the chat with her, I was hopeful yet nervous. I sat down and something about her face seemed to calm my nerves.  She asked what my main reason for seeing them was.  I began explaining this summers events. Then she began to tell me that I did have dysautonomia, and the tests proved it, but that my newest problems (the stroke like symptoms) were not caused by dysautonomia, and my heart fell.  Yet again I was faced with no answers! But what she did surprised me.  She paused and she gave me time to absorb this.  Her face was genuinely concerned and kind, and this seemed to pass on a strength I didn't have to allow her to continue.  As I gathered myself, she handed me a tissue, and continued. She said I would need to see a neurologist.  Because I had already been told no by 3, I began to think "What am I going to do?".  She explained that my symptoms were most definitely something neurological.  I told her how at the ER the Dr. said that it was not because my scans were clean and he told me to see a Phsychiatrist.  She showed no surprise at this, and said that it is common for Dr.'s to say this when they don't have an answer.  She said she needed to examine me, checking my vitals and stuff, and we went to yet another room.  She checked my heart rates and blood pressure again and then went to get Eric.  I got dressed and when she and Eric returned she talked to the two of us together. She had already taken the time to talk to Eric alone.  She told us that this looked like Multiple Sclerosis or possibly another muscle disease.  I asked her about what the ER doctor said, just to make sure that he was wrong when he said it's all in my head.  She told me that the fact that there were things like my pupil not dilating, no pedial pulse, the definite temperature change in one leg compared to the other in the same setting, etc. were signs that something was wrong and that a psychiatrist is not what was needed but a neurologist.  She said that she disagreed with the ER doctor.  We talked about some other underlying issues, changed my meds and added meds, and my visit was over.  I was to follow up with my general doctor, and try and get him to find a neurologist that would see me.  I didn't have much hope that he would, because the 3 he had contacted already had told me no.  By the time I arrived home that evening I had a phone call from Dr. Phillips office asking me to return their call.  Their office was already closed.  They called me back this morning, and said that they had found a neurologist that will see me.  All I had to do is get all my scans from the hospital and bet there tomorrow at 3:30.  And what's even better is the charge is only $70.00!!!

   Yesterday I came home feeling torn.  On one hand I had found a wonderful Dr. and staff that understands and cares.  I was confident that with their help I would be able to get my dysautonomia problems under control and managed.  On the other hand, I was terrified.  There is a possiblity I could have something worse than dysautonomia (her words to Eric).  There is a possiblity that the neurologists still won't see me, and my regular doctor will still think that I may need a shrink more than a doctor.  I have 2 children both of which could inherit my dysautonomia and Lord knows what else it is that I have whether it's hereditary!  I felt broken and scared.  But I knew that God was going to take care of me, after all, He always has!  This mornings phone call proved His faithfullness to me once again.  So tomorrow I'm off to see my neurologist.  I'm praying for good answers, and if there are bad answers, I'm praying for strength. After all, when I am weak, God is my strength.

Side note: I also need a sleep apnea test and hormonal workup later on.... not sure when yet.  I'm not on meds for my insomnia, and last night I rested wonderfully!