Best Clinic Recommendations

[Annaliese]

Hi everyone

I live in Australia and a number of the tests i would like to have simply arent available here. I am considering travelling to the USA for diagnosis (i think i might have hyper pots). This is going to cost me a huge amount of money because i would need to travel in business class (so i can keep my legs up). It is also going to be very stressful for me as i am quite ill and the travel time is about 20 hrs. Given these considerations i cant afford to make the wrong decision wrt chosing the best clinic/Dr. Would anyone be willing to make some recommendations? Ideally id like to be away for only a week and perhaps be admitted so all the tests can be done in one volley. Any help you could give me would be much appreciated. Btw, do any of the clinics have websites which list the tests they have available? Cheers!

[corina]

have you checked dinet's physician's list? you can find names and addresses of doc's/hospitals all over the world. not sure how up to date the list is but combined with member's own experiences that could give you a good start! good luck on finding the right doctors/hospitals for you,

corina

[comet555]

According to the DINET website there are 3 physicians in Australia that deal with dysautonoia.

http://thedysautonomiaconnection.org/physician-list/

You could also try contacting this lady to see if she knows of any good physicians, she's also in Australia and has a blog.

http://bobisdysautonomia.blogspot.com/p/contact-me.html

http://www.facebook.com/pages/Living-With-Bob-Dysautonomia/137659809587078?sk=wall

I would leave travelling to the US as a last resort, unless you've got piles of money. A first class ticket could very well cost $10,000 by itself. The cost of tests in the US could be huge, a quick google search showed the tilt table test alone could cost several thousand dollars. Hopefully you can find what you need in Australia, if not then I guess you'll do whatever you need to do.

[janiedelite]

If you choose to come to the US for testing, I had a great experience at Mayo Rochester. I had all of the autonomic testing done in 3 days, but had to stay at a hotel close to the hospital. I did stay for a week following so that we could explore abnormal results from those first three days.

However, the treatment they suggested wasn't very helpful. I took the testing home to my doctors and have had to come up with my own treatment plan.

But the testing was wonderfully thorough.

[Annaliese]

Thanks everyone for posting. I cant believe a tilt table test costs several thousand. Wow. I do know about the specialists in Australia. Australia does not have things like the antibody test i need though. Aparently i can send blood from here to the USA but it would cost 4000. I guess my thoughts were that if i have to travel on a plane anyway (i dont live in sydney or melbourne) then i may as well travel to the US where there is a greater throughput of patients. I have a very strange dysautonomia (dont we all) and i guess i am pessimistic about my chances of finding a dr here who has ever come across someone like me! It's interesting that the clinics post the costs of these tests up on the internet. I'll try a search. Meanwhile if there's anyone out there who knows first hand about these costs, can you let me know? Cheers. It does sound a bit like i cant afford the trip!

[comet555]

I didn't see any clinics posting prices for the tilt table but I did find some people who were asking around about how much they were. The answers that I saw were around $2000-3000, although it was just a quick search. I was surprised too but then it sort of makes sense as you need a quiet space for up to an hour and I imagine there's a nurse and doctor present as well (never had one so can't comment too much). But it does seem time intensive when you read people's experiences of it.

I have no idea how much the labs would cost but if factor in hotels at about $100 a night (plus tax) you're adding close to $1000, although there may be cheaper places to stay, but if you're limited to staying near the hospital you may not have many choices.

I've travelled a lot so I know how expensive it is to travel but the medical costs I'm not sure of. The US medical system is expensive though without any insurance. It won't be like in Australia where a lot is free and you only pay for certain things, or gap fees through the private system.

Here's an online site that may give you an idea of the cost of bloodwork:

https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx

I'd also have a read of this thread:

http://forums.dinet.org/index.php?/topic/16661-trip-to-mayo/

I'm not trying to scare you away from going there but I think it's probably a good idea to contact a few clinics and have them outlaw the major tests and the associated costs for someone who has no coverage or insurance and is from out of the country. Hopefully you can find what you need in Australia and can save a lot of money, if not then the US may be what you have to do.

Have you looked into New Zealand at all? At least the airfare would be a lot cheaper there and the flights is way shorter. Something to think about.

[Annaliese]

That's really helpful. Thanks very much. I'll check out the links. : )

[issie]

It is very expensive here in the States for treatment. I've been to Mayo, AZ three times. The first time it was over $83,000. And each additional time it was over $30,000. This is in US money. Thank goodness I have good insurance. I just had to pay my out-of-pocket money. The problem with Mayo is even though they are excellant at diagnosising - they don't really treat. They prefer for you to go to your own doctors to do follow-up. So, even if you get a diagnosis - your doctors may not know what to do with it. It's allot of trial and error. None of us seem to be cured, despite knowing what is wrong with us. Some have less issues and better quality of life. But, all in all we are still taking one day at a time.

My last visit I did have a whole lot of things ruled out. And found for positive sure that I'm the hyperPOTS diagnosis. This really does determine what treatment will be better to try. But, even with that knowledge what was tried ---I still couldn't tolerate. There are compounded issues in my case and the normal treatments - wouldn't work.

I do agree if you can find help in Austrilia you'd come out way ahead - since you will probably have to be treated there anyway. There is a member who is from there - I think in Melbourne. His alias is Ramakentesh. He is extremely knowledgeable and would be able to tell you who he feels is the best in your country. It seems he's interviewed quite a few of the specialist - from some of the conversations I've had with him. You might try PM or e-mailing him. He's pretty up on the Hyper form of POTS.

Issie

[Annaliese]

Thanks for the info issie. It's funny you should mention Ramakentish. I have noticed he is very knowledgeable and been searching for everything he has posted. Its a very good point you make about good diagnosis not always leading to effecfive treatment. I agree. I have read countless papers which have tried to categorize Pots for example into different categories and then recommend treatments based on the classification. The trouble is that none of us seem to exactly fit into these categories and even if we do, the treatments can do more harm than good. The drs are only trying to do the best they can with the info they have. More research needs to be done investigating specific mechanisms (eg like the paper identifying the gene resposible for NET deficiency). At the moment im going through every drug one by one to see if it helps. How is your health right now?

[issie]

Glad I could help - a little.

I'm still taking one day at a time. I think that olive leaf and arginine are helping. I also added grape seed extract. You can look these up and see what they do. Able to function a little better. Was able to go shopping with my mom - who can't see- and pick out clothes for her and do it in a standing position today. I've also recently started back driving after not for 2 years. I can only do one store though and by the time I was done - I was real dizzy and naseaus. Took everything I had to get us home. But......I did it!! Thanks for asking.

Issie

[Annaliese]

Issie, that's tremendous that you can go to the shops! I tried it and lasted 2 mins. Havent gone back since. Do you mind me asking how your pots started? Mine started in late pregnancy but i think i had a bit of CFS going on before that plus IBS. I have been very ill so havent been able to do much reading until now and have only cottoned on to the fact that someone like me with orthostatic hypertension could possible have LOW blood volume. That's thanks to Ramakentish. So, i have literally just sent off my partner to pick up some florinef. Have you tried it? The weird thing that's happened over the last year is that my standing BP has gone way down and now i would say i was hypotensive with a very narrow pulse pressure (eg 90/75). Also a year ago i had HUGE anxiety which had to be treated with doses of valium suitable for a horse. Now my anxiety is about 1/4 of what it was. I overall feel like i am slowly getting better but not by much. Do you think you have improved or do you think you are just better medicated?

[issie]

I think I've had POTS since I was a child. It started after a long illness of which I was hospitalized and missed over 3 months of school. I think a vacinne of the polio virus had something to do with it. It has just gotten worse as I've aged. I was able to function pretty well until I was in my 30's and it's been very difficult since then. I've had a whole bunch of surgeries and broke my back and both ankles/feet/leg. I think with all the traumas and stress my body has been through it compounded the problems. I've also developed several tumors - one of which is a brain tumor and that takes it's toll on your body too.

Actually, the only meds I'm on for POTS is Tramadol and Bentyl with an occasional Serax. The rest of the things I take are natural supplements from the health store. I've figured out what natural things work on the dysfunctions of my body and thats what I use. That has worked better for me than any of the meds I've tried. And believe me, I've tried almost everything. I know for sure that the meds I'm on have definitly helped, but so have the supplements. I'm HyperPOTS and I have more high bp's, than lows. I have the low's but they start out from really high - so my goal is to lower the highs. I was told that if there is a drop in the highs to even a normal range of bp - it is still noticable because it's too drastic of a drop too fast. So, there is the same feeling as one with low bp. But, mine can go real low too 82/63 at times. From 186/101. You see my wild swings. The goal is to have more stable even pressure - rather than the extreme swings.

The grapeseed extract helps the vasoconstriction and helps blood flow. Just the opposite of what florineff does. Florineff constricts your vessels. So the treatment for one with mostly low bp's is different than for us with the high bp's. I was told not to use salt, in fact to cut it way down. They are learning that the different sub-types of POTS patients have to be treated differently. The arginine helps to also retain fluids better - similiar to DDVAP. This I think has helped me too. The olive leaf helps with NET function and NO. So, that's what I'm doing right now and why.

Issie

[lgtaylor100]

Issie - How did you decide on the supplements. Did a doctor help you or did you do your own research?

I really don't know what is the next step for me (you can read my post from today). I know I have POTS but don't know what kind.

[Annaliese]

Issie, it sounds like you've had a lot to deal with for a long time. It's tough trying to problem solve all the time isnt it? You mentioned you had a brain tumor. My dad had one (a very fast growing one in the worst place- his brain stem) diagnosed 7 years ago and was given 3 months to live- he is still live (with no tumor) today. For his treatment we followed the recommendations outlined in the book by Ben Williams. Ben was/is an academic and has provided an excellent review of literature including the benefits of non prescription meds. This book is EXCELLENT! Im not sure if your tumors need treating or not but thought it harmless to pop in the ref anyway. Anyway, i hope you dont mind me diverging from the dysautonomia topic! Btw, tried florinef today and it gave me a big headache!

[issie]

Igail,

I've studied natural supplements for years and have such a broad knowledge I could be a naturepath. You have to be careful with supplements and treat them like a medicine. I'm very careful what I recommend to someone because it could be bad for them without knowing their entire health history. What could be good for one thing could be counter-indicative for another thing. I figure if someone else can learn about natural supplements - why not me. I'm intrigued by the subject and find the body fascinating.

Annaliese,

Thank you for the information on the brain tumor. At this time they don't think mine is cancer and are on the watch and see. I have to have MRI's every year. It is growing right now and has gotten bigger. But, they still want to just watch it. It wouldn't hurt though to do all the preventive things and I do most of the things in the article. I did not know however, that some things could protect certain cancer cells - like the NAC. I've also heard that if you don't have cancer that drinking aloe juice every day should dissolve tumors. I'm in the middle of trying that one. We will see. I've flagged the article you sited and will keep it for further reference if - by some awful chance - I need it. Thank you!

Issie

[Annaliese]

Issie, am very relieved to hear that your tumors arent cancerous!

[Dizzysillyak]

Thanks for starting this thread. I was considering going to a specialized clinic but can see how it's not worth the time or money.

When in search for more info on my celiac disease / gluten intolerance / gluten ataxia, I went to a specialized clinic for my celiac disease. I was told that in order to be tested I'd have to go back on gluten and the doctor didn't recommend it. I'd healed from gluten ataxia at that point, so he didn't think it was a good idea to test my brain with gluten ... thankfully .. he left it up to me to decide but I could tell, he didn't think it was a good idea. i mention this because it gave me peace of mind to know that I at least tried.

ON the other hand, if you need a firm diagnosis for peace of mind or disability it would be helpful. But as far as treatments go, we have a lot of info on this site as to what works or doesn't. NOT that any of us have cured our dysautonomia BUT we have found some things that really help with our symptoms. This isn't to say that there aren't those who've cured their dysautonomia, but we're here becuase we haven't.

IMHO, dietary changes are critical. A diet without common intolerances such as gluten, dairy, soy, caffeine and chemicals seems to help a lot of people. The elimination diet and / or testing can help identify others.

Gluten, caffeine, dyes and HFCS are known for causing anxiety / jittery feelings. As is hypoglycemia. Hypoglycemia can be from a variety of reasons including eating high carb foods. Or as in my case, my body over reacts to sugars by producing too much insulin (hyperinsulinemia). And too much insulin will cause a drop in blood glucose / hypoglycemia.

Limiting the amount of fruit / sugar I have at one time helped not only regulate my blood glucose levels but stopped the nausea I had from too much insulin ...

thanks for the supplement info ... Maybe we should start a new thread ? But ... On the arginine, if you have Herpes, arginine will cause it to flare. And I'd read that grapeseed oil is for killing pathogens and didn't realize it had anything to do with nitric oxide. I guess there's a nitric oxide pathogen connection ?

thanks ... d

[issie]

What grapeseed extract does do is help your arteries not to constrict and helps the blood to thin out and to flow better. It also helps with migraine headaches for the same reason. It will LOWER blood pressure. So those with already low pressures probably shouldn't try this. It's more for us with HyperPOTS. It has also helped with brain function - it is being used in Alzheimer's disease for those trying to do natural things. I've also read that some people swear it helps their skin with brown spots and wrinkles - haven't noticed that yet - only had one bottle so far. But, my varicose veins do seem better and my legs don't hurt as bad. I feel like my brain is getting more blood and oxygen. It is supposed to be higher in Vit C and Vit E and help with collagen - for those of us with EDS.

Yeah, I'm glad they are not thinking cancer at this point too. Hope it stays that way. Don't need any other trauma.

Issie

[issie]

Well, now that I looked back on my info - there is a connection with grapeseed and nitric oxide. It helps with the nitric oxide in the veins the bad type iNOS that can cause inflammation. It helps with the collagen too. Look up grapeseed and nitric oxide - gives lots of info., is lowering my high bp and helping with my blood flow and oxygen. Not having as much naseau or feelings of pooling. Keep in mind - this will work for high bp and hyperPOTS. It would probably make the regular OI type of POTS worse.