New Here W/ Hyper-Pots & Have Some ?'s

[sisblostg]

Hi everyone!

I was formally dx with Hyper-pots last year at the Mayo clinic. I have had symptoms for over 20 years but because I was had some kidney and blood clotting issues, I had some of the proper medications but for for the wrong problem. The Mayo was able to look at my hospital records from my teenage years, my pregnancies, and previous hospital visits/surgeries and they were pretty sure I had clear pots symptoms since 14. As much as being formally dx has answered so so so many questions I am glad in some ways I didn't know sooner. If I had known what was really going on, I would have probably not traveled as much as I did and met so many wonderful people. Now that I am mostly housebound I am glad I did as much as I did even though sometimes I got very sick after my air travels.

Last May one of my kids got really sick for over a month. I was always a person who needed my sleep (I have an awesome husband who got up with our kids for every feeding and diaper change). The month my son was sick I got very little sleep and was so stressed. Of course my doctor told me to go home and rest. I tested positive for elevated EBV so I took the dr's advice and rested. By August I couldn't even walk to the bathroom. No local dr wanted to treat me (though I pretty sure 2 of them knew what was going on) so I waited and went to the Mayo Clinic. It took about 10 minutes for the dr to have an educated guess. I went through my week of tests and got dx with h-pots(gosh I was so glad I got my answer after years of thinking why do I have "panic attacks" at certain stores that have long lines but never at stores that have self check outs!), low vitiam D and B12, and low soduim(I had been on a very low sodium and restricted fluid diet for 10 years due to my kidney).

I could only spend one week at the mayo clinic and it would be hard to go back (financially and finding someone who can get time off). H-pots explains alot of the unknowns I had over the years. The issue the Mayo did not have time figuring out was what is going on with my feet. I have had 3 EMGS (my grandma died of ALS so I triple checked). Bewteen May and October of last year both my arches fell(I had never had issues before), My feet were so flat and wide I could not fit into my shoes,, I went up 2 sizes. My toes are doing weird things, like my pinky toe can go sideways almost horizontally and my second toe on both feet bend inward, some times toes painfully cramp. I have to wear thick fuzzy socks around the house because my bare feet feel too unfortable on the floor. I went to a podatrist that just works with flat feet and he could not help me and he felt it was something "systematic" and related to my neurological issues. My fingers are also more flexible then others espcially my left hand. I brought up EDS to my primary care doctor (who is very nice but clueless, he just follows the mayo instructions) and he googled it and said that my toes and fingers are extra flexible but not as flexible as the pictures of people with EDS.

After getting back from the mayo clinic I started cardiac rehab and was starting to get better. I went from bedridden to doing laundry, dishes, cooking, and being able to sit through school functions. Then 3 months ago I started getting little infections that wont go away. I got my first cold sore of my life and I had a swollen chipmunk face , fever and huge glands for over 1 month. Then I got an infected hair folicle(first time as well) another month, then strep thoaot(3 courses of anitbodics) and now I have a horrible sinus infection. My primary care dr dropped me over frustration of not knowing what to do. I have to start with a new primary dr. I really want to get back to the cardiac rehab but I with the non-stop infections I can't. My new dr is open to test for any sort of auto-immune condtions. Any suggestions of what to be tested for. I have had high levels of EBV and CMV for 10 years. Anything else?

I just am feeling frustrated because it has been 10 months (I feel like I did when I was on bedrest when pregnant but this time my 10 months of bedrest didnt get me a baby) and even though I can do some basic housework everytime I stand up my pusle still goes from 70 to 130-140 instantly. I have not gotten any real relief just learned how to manage fast pulse, the adrenaline surges, and how to pace the little activites I can do.

Sorry for such a long intro! I currently live in a rural middle of desert area over 2000 miles away from home so besides a great husband and 2 understanding kids I have little support.

[firewatcher]

Welcome to our dysfunctional family! Sorry that you are here, but glad you found us.

I'm a Hyper-POTSy too and I also have kidney issues. Does your doc know what your "issue" is, or is it CKD of unknown cause like mine?

The cramping could be sodium related, but I have no clue. I am going through the electrolyte balancing act right now myself.

Sorry I could not be more help, but you will find more answers here than a dozen docs could give you.

[sue1234]

I'm going to mention two things to make sure gets ruled out:

1. Addison's disease, due to low sodium and symptoms, and

2. Growth hormone, due to your feet growing up to two sizes

They actually could be connected back to the pituitary gland function.

Besides that, maybe see a doctor that specifically addresses your chronic viruses?? I don't know what that would be--an immunologist or something? Maybe they can settle your sytem down so that you can get back in your helpful rehab program.

[Sarah4444]

Hi there, and welcome. I just wanted to mention that my feet seem to be falling too, according to the HDCT/EDS specialist I saw, Dr. Francomano. And apparently there are over 200 different hereditary disorders of connective tissue, with EDS being only one of them - she suspects many people have collagen defects/HDCTs that haven't been diagnosed or even named yet.

Also, after not having an infection for as long as I can remember, I too got my first cold sore and another infection at the same time this month, right after my period. There's something weird going on with my immune system, but don't know what yet. Hope you continue to improve.