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Mayo Clinic Update


hopeful-girl

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Hello. For whatever reason my post was deleted. I guess Istepped over a boundary and it was abit confusing. So sorry again.

I met with the Doctor today. He dianosed me with CFS, Fibromyalgia, POTS, and low blood volume. We are also going to check for RSD (reflex sympathetic dystrophy) I will know that next week after my gastro testing is finished. My sodium should be in the 100's andmine is a 7. iwa shockked at that. So he said I had extremely low blood volume. The sweat test was fine for me. I prettty much passed it. There may have some slight damage to the vagal nerve but it looked pretty good. I also had the best tilt table test ever out of the 4 I have had. Go figure eh LOL However I did take all my meds before the test. He did not tell me other wise and the direction I had did not say to discontinue anything and Iasked the nurse if I should pass up my pain meds and xanax prior to the test. I do beleive it affected the outcome. However I wasn't aspPOTS as usual either. There are occasion I am not super potsy at certain tmes for what ever reason. I did tell him that my blood pressure can fluctuate with in hours and even less. One minute it seems ok and the next it seems drastic. OH well it was not perfect so he also diagnosed me with Dysautonomia and POTS. However when I was in the office this mroning. I was way symptamatic and he could even tell. Murphys law LOL

I still have my gastro to be done Mondya and Tuesday so I will be meeting with the Neuro 1 more time before I leave.

So I am allot less frustrated and stressted. I am done fighting with the insurance, they are being more co-operative now. Which lifts a huge stress factor and I got the weekend to rest and refresh and mellow out.

Have a great day

Corina

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I am surprised there wasn't more communication PRIOR to the TTT about what meds you should take? But as long as you are getting some answers.

Hope the rest of the visit is enlightening. Good luck

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Hi Lauren. Well Dr. Low was very helpful and he was a bit discouraged and felt helpless too! Because he told me that I had already used my resourse up as far as meds and he has no advise to give me really. Accept to try and get my sodium up

I had learned from here when I first joined that lots of H2o was extremely important for the pots patient

because of our low blood volume. Since my blood volue is extremely low he told me to take salt pills. My sodium was 7.

What kind of salt pills do some of you take and how much? I am just curious.

That is ll he could suggest. I have tried everything else. When I get back home there are two things I can try to help with my chronic pain. One is cimbalta (sp?) It is an anti depressant and they found that it can help with blocking pain receptors. I can also maybe try Neurotin. We will se when I get home.

Florinef is out of the ? I had a bad reaction to it. Midodrin is out too. My blood pressure fluctuates from high to low. And I have bradycardia and tachycardia. I also have to take knapps too. SO I the Doctor feels it would not be a god idea.

So I I have all my gastric stuff on Monday and Tuesday and maybe they will have some different options for me at least in that area.

Have a great day :unsure:

Corina

Hi. Me too! I was surprized they said don'ts stop my meds. So I am sure that is why I had more of a melow TTT. Iwas going totalk to him about htat again before i leave.

Cheers

Corina

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Hi!

Im glad that things are being diagnosed for you! I just wanted to say that my dr has me on Neuronton for pain, it does help- however I am now at the max dose and am not finding it to be wonderful.... but I have been on it for a year. When I went off it to try Lyrica- then I relized how much it helped! But now the Flornef seems to be helping a bit more..... anyhow just wanted to let ya know that it might be something that could help you- it made a HUGE dif in the beg.

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Hi,

Let us know how you make out when you leave! :)

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You asked about salt pills- I just pop 1 gram tablets of salt all day. I've been advised to take up to 10 grams per day but I must admit that due to the frequent urination I've found myself cutting back.

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Hi Ernie. I will ask about that. I was very detailed and listed all the meds I currently take on paper and gave them a copy. That showed everthing. The amount and how often etc..... they told me they would le me know when I shouldnot take it for a certain test. Andthey did on some but not the autonomic testing. Now the one thing is. They never told me what the autonomic testing would be. And are time was limited and so much was covred and I dtill have question but we were out of time. He had to move on to he next patient. However if I would of known they were doing a tilt table test........I would of known automatically to stop taking my meds for that.

So definately some thing I need to ask aboyt before I leave. Thank you Ernie for the post I appreciate it :0.

Corina

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Hi Linda funny you posted. I was going to just IM you LOL I am at rochester Minnesota Maya and I think that is where you are at correct? I would love to try and hook up. My Mom flew my daughter in. SO we are going to Mall of America in a while. We hould be back later So maybe this evening. Are you alone right now? Did you say your hubby had to go back or he would loose his job or your hubby said that? I am not sure about your condition and such. Can you stand and walk alright? If so we would love to take you with us to the Mall of America. We can get together when we get back other wise and maybe we can do dinner. We can pick you up we have car until Monday.

Look forward to meeting.

Corina

Hi Linda funny you posted. I was going to just IM you LOL I am at rochester Minnesota Maya and I think that is where you are at correct? I would love to try and hook up. My Mom flew my daughter in. SO we are going to Mall of America in a while. We hould be back later So maybe this evening. Are you alone right now? Did you say your hubby had to go back or he would loose his job or your hubby said that? I am not sure about your condition and such. Can you stand and walk alright? If so we would love to take you with us to the Mall of America. We can get together when we get back other wise and maybe we can do dinner. We can pick you up we have car until Monday.

I im you and I also e-mailed you I will e-mail yu again. I forgot to give you our numbers.

Look forward to meeting.

Corina

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TY Bee. It is nice to have it written n stone instead of guesing ;-)

Night

Corina

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I'm surprised they didnt have you go off your meds. when i was there, they made me go off everything and i'm not even sure why cuz my heart rates still surge even WITH all my meds.....

but if they got the answers, even with you being on the meds, then i guess that's all that matters.......

hope you are well.

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Hello. See that is what I thought was odd too. When I finally got the apointment in the beginning to go to the Mayo. I aksed if I should go off my meds before hand. The nurse told me "NO" That depending on the tests they wiill have you maybe stop taking them the day before a 2 days before the tests.

I really wish I would of stopped for the autonomic testing. Oh well I am glad to behome and every thing is partially done an over with. Iwill post a new topigf abou that :unsure:.

Night

Corina

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I did NOT get all the answers though. I am sure the meds played a role in possibly not being as accurate as it could of been. And I am ANGRY that they did not tell me to go off of the meds. It was specifically stated to me to continue all meds unless other wise instructed by my Doctor there and as I think I mentioned. They had my list of meds I was on and ones I can not take. I had given those to the Dr. the first visit. SO they knew what I was on. I just assumed that they would tell me like they said they would.

SO there are some answers................however I think my meds probably interefered with the accuracy. But that is just my oppinion.

What also pisses me off is that I was actually having a decent morning which is rare for me. But does happen. It just figures It would be on the day I am doing the tilt test LOL I did good threw the test. However two hours after the test I could barely walk up the hotel stairs with out being so out of breath ad feeling light heade etc................Go figure.

Oh well I got mre testing to do here now ;-).

Night

Corina

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