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ArmyNPots
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Good morning everyone!

I have been diagnosed with POTS for over a year now, im in the army and the only access to a physician is my cardiologist who isnt that educated on my condition. I just gave birth to my beautiful baby boy 3 weeks ago and my symptoms have worsened. My husband is also in the military and as you can imagine, the military isnt very understanding about such a rare condition.

Basically, I need a DR. to write a note explaining the condition and how i need my husband to monitor me , especially for the safety of our son.

Does anyone know of a DR. or how I would get access to someone in the Texas area (im stationed at fort hood) that would be able to help.

Isnt it horrible when Drs. dont understand your disease? It just makes you feel stupid and inadequate. Someone please help. Thank you.

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I am so sorry to hear that you too have been diagnosed with pots!!! You may want to check on the net for docs located in your area. Texas is a really big place I am sure there is someone who can help. You may also want to send one of the brochures of this website to your cardiologist. It is very common for docs not to know about this disease. hopefully this will change in the future.

Hope I helped some,

Rita s

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You may want to look at the pinned topic at the top of this forum called "help yourself to answers to common questions". There are links there to sources of knowledgeable physicians. Also, you may print out articles and even a PDF book to learn more for yourself or pass along to your doctors.

Nina

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Hi Army..first of all congratulations on your little boy!! ;)

I used to live in TX several years ago before becoming ill..so I don't know any specific docs. other than those listed on the physcians list. Where is Ft.Hood again..I can't remember what area you're close to. My suggestion would be to look at the major cities around you and find the med. schools and major hospitals..ie. UT in Galveston has a med.center..as well as the one in Dallas. Houston has several major medical centers..ect. You may want to focus on neurologists or cardiologists when hunting for a doc. that's familiar with POTS. Before I found my doctor I was told to look at med. schools first..they're always up on the "newest" research and tend to know about "rare" conditions more.

If no luck with that then I'd do what Nina suggested...educated the docs. around you..perhaps they could contact the specialists on the board and co-treat you if you don't live near the Dallas area.

Good luck..I know how hard it is to find a good doctor...Congrats again on your baby!! :)

michele

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Hi,

When researching this after my diagnosis, I found that many,many patients are from the military. I would call Walter Reed and see what they offer. Also the NIH has information. Sorry this is such a difficult time. Miriam :)

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Hey there! Congratulations on your baby boy! I'm sorry you're having such a rough time. I can't imagine how hard it must be for you right now. I grew up in the army (in Canada) so am a little familiar with how hard things must be for you with that lifestyle and trying to deal with the docs. Would your current doc be willing/able to do a phone consult with a doctor that specializes in POTS and can send the notes/info that you need? I don't imagine that you'd have much family near since your posted out there? It's extremely important that you have help available for you and the baby and that your doctor understands that and is willing to find ways to help you. You just can't have your husband going away on course and leaving you with no resources! I hope you can find something useful here. Laura

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Sorry you are going through this too. Dr. Levine is in Dallas. I was referred to him. He is a cardiologist with an interest in POTS. I have found no other doctor in this area and I have been looking hard! I am using a doctor in Fort Worth for alternative treatment, and it is too early to tell if it is going to help. JenniferTX

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hi army -

i don't think we've met, so...hello! first, congrats on the little one ;)

with that good/easy stuff said, i must say that my heart really goes out to you re: your current situation. i've never been active duty but was contracted as an ROTC scholarship cadet when i got sick...or rather when i got sicker. long story short, the army was NOT a good place for me to be with my health issues. that's the short version, but i'll spare you the crazy saga (that is still unresolved years later...)

initially i was going to say that i'm surprised you're still "in", but then again that's one of the pros/cons of an unusual condition i suppose. i know that for me at first when i was in my teens & we overly-optimistically thought i'd grow out of my symptoms everyone thought it would work out okay. looking back i don't know what i was thinking...nor anyone else...of course we had no way of knowing how things would progress, but still....standing at attention isn't exactly a good thing for any type of dysautonomia...

i'm sorry that i don't have any resources to offer you aside from what has already been mentioned, but i had to lend my support. i really hope that you find a doc that can be a support system for you.

hang in there,

:) melissa

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I'm not sure where in TX you are located. I agree that if there are no specialists in your area that a medical school might be a good option.

You can also check out this site:

http://www.hrsonline.org/find_heart_rhythm...ist/default.asp

They may not all know about Dysautonomia but it's a better bet than just any plain ol cardiologist.

Congratulations on the birth of your baby!

The only other suggestion I have in case your husband does get sent off...contact a local hospital or the county service on aging and see if there are any resources in your community to assist you. If you can get hooked in with a local social worker they are often aware of community resources.

I am having to hire some help even though I really can't afford it.

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Isn't Ft. Hood in San AAAAAntoonio???? we were just there for my sons commishioning service. I'll e-mail him andask how he would start. He knows alot because of me. Everytime I go to Seattle to see my grandchildren, and he and his wife too I end up in the ER dor a tank full. He also is working on a list of doctors that treat dysautonomias in the Seattle/madiggan area will post to the appropriate person. I have been treated well every time I have gone to the ER there, Harborview, I you don't mind the county hospital, which until the thie=rd time I decided I do, Jeff scoped out a couple others that his faculty said if my wife were sick I would take her................., and thatrs wheere my memory ends .Sorry

N

Miriam

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