Dr. Charles Randall “Randy” Thompson

[CarrieJessica]

I am leaving Missouri and heading to Pensacola next Tuesday, my appointment is on the 2nd and I am downright excited. I do have a great neurologist and an empathetic cardiologist but they both said all of my different issues are a bit much for them to come up with a game plan with confidence (thank goodness for the truth, the last guy said he knew "all about dysautonomia" and was way off). We are very hopeful that Dr Thompson can make sure my multiple issues are correctly defined and if we are on the right treatment track or if he has a better suggestion.

My husband was laughing at me when I said I had a date with the Dr House of Autonomic Dysfunction.

Have any of you gone to to see him? Anything you can suggest to make sure I get the most out of my time with him is much appreciated.

[Kellysavedbygrace]

I am excited for you.

Randy is my doctor, my friend and has been a Godsend in my life. I can't imagine going through this without his help and encouragement.

I'll never forget my first visit with him. In the waiting room I met three people who all had POTS (including the receptionist.) I didn't expect to get emotional but I had not yet met anyone with POTS (except online) so I was overwhelmed. Randy came out, he was running a bit behind and told my husband that we had time to go get a bite to eat- so we did. When we came back, I had the most rewarding doctors appointment I've ever had.

Randy took his time. He told me his story about his onset of Dysautonomia. He asked me questions about my case. He read (or looked at) every page of my medical chart- which is in a 2 inch binder. The he helped me understand the basic etiology of Dysautonomia and then discussed possible treatment options that I did not know about- some of which I have tried and am using, some I have not yet. He is an excellent resource in helping you develop a treatment plan. He has a deep southern drawl and is humble, kind and honest.

I have no doubt you will be delighted by your visit with him. He will encourage you in a way no one else can because he has seen so many cases and understand what is like to walk in our shoes. Here are a couple of tips before your trip:

- double check the insurance coverage. (last time I was there he only accepted a few types and we have had to pay out of pocket- which has been well worth it. He does provide all you need to submit the visit to your insurance for reimbursement but it is helpful to know this in advance- you may already be aware of that.)

- plan to take your time with this first visit. Not sure how long your visit will last but make sure you have plenty of time.

- bring copies of all your medical record with you. Even if you've submitted in advance. It is handy for him to be able to look at all the info in one place.

- Ask your husband to take notes for you if he is up for that. He'll cover so much ground you'll appreciate any notes afterwards and if you are like me you'll become too tired to absorb it all while there.

- Having your husband go with you is so important- I almost had my mom drive me because it was hard for my hubby to get off of work. We are so thankful he did. It was helpful for him to hear all the info which has translated into him really understanding what is going on with me when I can't function like I used to.

- There is a great cajun restaurant about, "Jerry's" two miles south of his office on the right side of the street-each time my hubby and I go it is a highlight.

[Christy_D]

CarrieJessica,

I live in my Missouri as well, St Louis. My son's neurologist is an autonomic specialist who used to work in Cleveland with Dr Chelimsky. If you ever feel you need someone closer to home let me know and I will forward you his name.

Best of luck with Dr Thompson, I hope he can help with a good treatment plan.

Christy

[angelloz]

Chrisy,

I live in Kansas and would love to know the name of a good doctor in Missouri. If you don't mind sharing that would be great.

Angelloz

[CarrieJessica]

Missourians! I am in Columbia, right smack between you two! My husband is working at Mizzou.

Kelly, thank you for such great insight. Wouldn't you know he takes me insurance but they wouldn't approve me because there are "plenty of doc in my state that could treat me". So I am paying out of pocket but feel its so worth it. They told me it will be a 3 hour appointment so I am bringing my hubby, water, paper and pen! If all goes as planned we will be done at lunch time and Jerry's it is!

[Christy_D]

Angelloz,

The doctor in St Louis is Dr Laurence Kinsella at St Clare Hospital in Fenton, MO. We like him a lot and he has even been willing to try my suggestions when I ask him about them (ie-IV Saline,etc).

Christy

[McBlonde]

Has anybody heard from CarrieJessica since she got to Florida? Hope the appointment went well!

[Kellysavedbygrace]

CJ, Hoping it went well & glad you knew about the insurance. Yes, I'd love to know how it went too.

[CarrieJessica]

Just got home and it went really well!

Dr T or Randy as he prefers to be called, was great! We (hubby, myself and Dr T) say very comfortably an went over my history in great detail and he read the records I brought. Most of the general dysautonomia info was confirmation on what I have read.

The benefit came when he explained ME. I am always trying to figure out do I have POTS, OI, IST yadda yadda. I want a specific clear diagnosis. He was able to get me to relax on that. I have dysautonomia, for me that means all of it. Sometimes my BP shots up, sometimes my BP drops, others my HR jumps up and again sometimes my HR is way too slow. Both my sympathetic and parasympathetic nervous systems react irregularly and in a strong way. When I said 'okay I will relax on the specifics... but if you had to give me a specific what would you say' (he laughed) he said acute Orthostatic Intolerance and or a Pure Autonomic Failure.

He did make some pretty big changes to my meds and sent the records from my appointment into my neurologist here in Columbia, Mo. I will have a phone follow up with him in about 3 weeks to make sure I am doing okay on the meds, following up with docs here and will see Randy in 6 to 12 months.

I was prepared to pay for the appointment because my insurance, which is one he takes, but didn't approve me because it was so far out of network. Randy said no sweat, they would try and process it and let me know.

[Chaos]

Glad to hear your appt. went well! How nice to see a doctor who truly "gets it" on all levels.

Thanks for the update. Hope you have good luck with your med changes.

[CarrieJessica]

On an afterthought. It was so nice to be talked to and not treated like a science experiment.

[CarrieJessica]

and I did manage to have fun while we were there

http://boonefamilyupdates.blogspot.com/2012/08/metal-chickens-really-do-make-for-best.html

[Loulou]

Randy is my doctor too, he is really great.

[Anoj]

This sounds awesome. Pensacola is about 5-6 hours from me. I wonder if I could handle the trip.

[McBlonde]

This sounds awesome. Pensacola is about 5-6 hours from me. I wonder if I could handle the trip.

It's 9 hours from me, and for the 1st 6 hours, I felt so horrible all I could do was try to meditate to get through it. However, the closer I got to the coast, the better I felt. It was so weird, but after about 6 hours of driving South, all of a sudden I raised my seat and noticed I didn't feel as bad. I felt so much better the whole time we were there. I felt good as we started back, but the closer we got to home, the stronger my symptoms because. I find this crazy and I have tried and tried to come up with some logical explanation. My husband said maybe it's the salt water in the air acting like a saline IV does. lol! There has to be some objective thing that happens to my body there because that's 3 years in a row that it's happened. I just don't know. It's now like Fl is any cooler or less humid than Louisiana, lol, so that's not it. Is there something that being at sea level would do to your body? Interestingly, in theory, it would seem that San Diego would make me feel better for the same reason (whatever the reason is) but it didn't even though the weather is stable and cooler there. It drives me crazy not being able to figure this out!

[Christy_D]

My son almost always does better traveling, away from home. Since he has MCAS, the doctor said envrionment can play a role in his symptoms and we live in one of the allergy capitals of the US (St Louis). If we can't get a handle on his illness, a move would have to be a possible consideration. We tease him that he should travel 52 weeks a year so he can feel better. The one place he did not feel better was Gulf Shores, AL, but he felt his best and most funcitonal at the Mayo in MN. His doctor was serious when he told us it might be a place our son should consider living.

[McBlonde]

Christy.... that is SO interesting to hear that it came from a doctor (Mayo no less)! It's not just in my head!

[Chaos]

My son almost always does better traveling, away from home. Since he has MCAS, the doctor said envrionment can play a role in his symptoms and we live in one of the allergy capitals of the US (St Louis). If we can't get a handle on his illness, a move would have to be a possible consideration. We tease him that he should travel 52 weeks a year so he can feel better. The one place he did not feel better was Gulf Shores, AL, but he felt his best and most funcitonal at the Mayo in MN. His doctor was serious when he told us it might be a place our son should consider living.

Just out of curiosity....was he at Mayo in the summer or during a less allergy-prone season?

[CarrieJessica]

it was 14 hours for us. my hubby and I packed up the 3 youngest kids and it took us 2 days to get there. we met my parents in Pcola. I think knowing I was going to see Dr T and that my parents would be there to help got me through it. I mostly had lots of arms and legs tingling but being in a car is okay for me because I am sitting (I think). I had to be careful when we stopped that I got up super slowly.

[Christy_D]

We spent 5 weeks at the Mayo from October through first week of November last year. Dr Afrin said that the job of the mast cell is to basically react to environment, in the body and outside of the body.

We had an appointment with my son's neurologist today, the POTS doctor, and also discussed why my son has being doing so poorly this year. He recommended going away for a week or sending him to some type of camp to get him out of his local environment to give him a break. So even the POTS doctor agreed, to get out of this rut maybe change environment. But, there is no way I would send him to any camp. He is just too ill to send to the care of strangers who know nothing about this illness.

[Kellysavedbygrace]

ChristyD, I almost always do better when traveling,

( except now- I'm in Idaho visiting my hubby's fam and we are at high altitude so I think that is why. Needed extra saline just to bail me out.) But my hubby and I have joked about how I almost always do better when Traveling. I have wondered if adrenaline plays a big role in that for me.

[Ashelton80]

How long does it take to get an appointment with him? Does he do additional testing?

We vacation in Watercolor several times a year and Pensecola is only an hour or so away. I was thinking of Going back to Dallas to see Dr Suleman, but this would be a much easier trip! Plus we could sneak in some beach time. I always feel better down there!

[CarrieJessica]

My mother called today and has an appointment Oct 1, they had a few earlier. He only poor man TTT me and from what I have heard that standard for him. He is VERY laid back but knowledgeable. He also suffers from dysautonomia so if he has an episode your appointment may be pushed back a day, mine was.

[Ashelton80]

Ok Thank you! That time frame isn't long at all. If all he does is a poor mans tilt, how does he determine what your treatment looks like? Just based off of symptoms?

[McBlonde]

Ok Thank you! That time frame isn't long at all. If all he does is a poor mans tilt, how does he determine what your treatment looks like? Just based off of symptoms?

He also requests you bring a copy of your TT test with you. He was an internal medicine physician trained at University of Alabama when he got POTS. He's been practicing with it 15 years (I think).... He's had so many of the same struggles we have tinkering with meds to try to get symptoms under control. You and I both do better with the Destin cure! I feel so much better there. If I could move there tomorrow, I would.