A Diagnosis!

[lavender]

I finally have a POTS diagnosis! After 20 years of not knowing what was wrong. I had an appointment with Dr. Grubb's nurse a few days ago. She was wonderful. I've been suspecting that POTS is the answer to my medical mystery for the last few years, just from my own research. It was so great to finally get to talk to someone who knows POTS so well and actually understood my illness. pretty big break through for me. I'm thankful.

Erin

[brownsea]

hi lavendar

glad you have the diagnoses, now you can find a way through to get you some help.

xxx

[Rachel]

Yay! I'm so glad you have a diagnosis now! Sorry you have POTS, but glad that you at least know what is going on now.

Rachel

[lauralulu]

I understand the 'yay, I have a diagnosis' jubilation. Not because I have mine yet, but because I am sure I will feel that way once I eventually do (which fingers crossed I will!). Often, I think fighting an unknown enemy is sooo much harder than when you know what you're dealing with. Glad for you that you KNOW, but not that you HAD to know of course.

[erikainorlando]

Yes, I think that the not knowing part is the main struggle for most of us. It was so terribly frustrating...furthermore I couldn't figure it out. Sometimes I would be kind of ok...then without warning I would be so ill and have to sit. Now I know I had been upright too long but before I knew what was going on I was lost!

Now I can manage it so much better...I have learned the triggers and what helps...

[Brye]

The good and the bad news! I'm sure you must be so relieved to know what you're dealing with for sure at least. Hope there are some good treatment options that work for you!!

Brye

[Maxine]

Erin,

I'm glad you finally have a name to put on your illness. Will you be following up with Dr. Grubb for confirmation?

I hope Dr. Grubb can come up with some good treatment options for you. What type of testing was done?

Did you have a tilt table test? Was there any blood work done----i.e.------------>catecholimines.... http://medical-dictionary.thefreedictionar...holamines+Tests

Has Dr. Grubb looked at your medical history? When I finally got my diagnosis, Dr. Grubb based it on my medical history.

Good luck to you.

Maxine :0)

[lavender]

they said they'd make sure and work it out for me to see Dr. Grubb next time we're in the area. It was a bit tricky to get an appointment the week of christmas. We're in the area for a short trip. Once I'm done with my pregnancy they'd like me to come back and talk more about trying some treatment options. We didn't do any testing. We mostly just talked through things. I had sent in a really thorough medical history and an explanation of my symptoms. I also gave her some copies of a couple of my own "ttt" that I'd done at home. She felt like all of it showed very clearly that I had POTS. I'd like to do further testing with them for things, but she felt like because of my history and just watching my heartrate durring the appointment that a TTT isnt needed. I also have super bad raynauds with chilblains and some kind of underlaying autoimmune process going on. She was pretty certain it was Ehlers-Danlos, but I'm not sure. Someday I'll have another appointment with Dr. Grubb and talk through more of that and hopefully get a few more answers. I may be able to do a little of that through my doctor in Alaska. For now, I'm thankful for what i learned from Beverly and was super impressed by her.

[janiedelite]

I'm SO happy for you that you're finally getting some answers! I hope your pregnancy continues to go well, and that you respond to treatment positively!

[Maxine]

Hopefully you can see Dr. Grubb in the future. Ehlers Danlos Syndrome (EDS) isn't an autoimmune disorder. EDS is a genetic disorder of the connective tissue, and you'll need a thorough medical exam by a geneticist who is familiar with EDS/connective tissue disorders to confirm a diagnosis of EDS.

I hope you don't have EDS, but if you do, I hope you can find a qualified team of doctors to work together in managing your EDS symptoms and pain. Dr. Grubb should work well with a geneticist, and your PCP should be kept in the loop. Right now my EDS has caused so many problems, and I have a neurologist, gastroenterologist, PCP, orthopedic surgeon, and Dr. Grubb working together tyring to figure out what to do to help with the digestive and spine instability problems.

It looks like you have a good start seeing the NP in Dr. Grubb's office, but it is important to have the necessary follow up with Dr. Grubb, and any other physician necessary to confirm any of the conditions Dr. Grubb's nurse has diagnosed.

Take care of yourself.

[lavender]

Thanks Maxine. that's helpful info.