Jenn202

Hello Tearose, Steph and Ernie - You guys are SO wonderful! You have helped me so much in being able to make good health decisions.... Thank you thank you!! Tearose, I know you are a Mayo "pro" so I am sure I will have some questions when the time comes.... !! Steph, again your support means so much It makes me laugh b/c it really does seem we have a similar bodily "make up"... The 2 of us together would have Put Subway out of liquid for the day!! LOL And yes, when the time comes I guess I will be told what I can and cannot eat/drink.... The not drinking will be hard. My husband will be going with me, and I am sure we will rent a car so I am hoping to have some time to site see a bit...... Ernie: Thank you SO much for your input! Yes Our insurance covers both visits, its just the airfare and Hotel/food that will cost.... Its hard b/c right now we are in such a finacial bind with all this.... I have been battling a respiratory virus for the last few days, and am hoping/praying that I will be well enough to fly in a week or so...... Happy Easter to all of you! I hope you all have a healthy day

Hi Nina - I am so glad you got some answers as to why your BP was so High. I hope like myself that you will find quick relief once the steroid is out of your body. I am sure as you lose all that retained fluid your BP will follow Good Luck and feel better!

Thank you Miriam, Steph, and Dawn Steph - The last thing I think is that you are crazy! It does seem like we have a lot in common and it is so reassuring to hear your experiences! Thank you so much..... Also Miriam and Dawn...thank you for providing your Mayo experience as well.... I called Mayo today and Dr Low is out of the office until next week. The receptionist said the next available appt was in June, but then my ANS Dr here told me I probably would get in within the month b/c he will be speaking with Dr Low... So I am kind of up in the air with Dr plans.... If I get a call from Mayo in the next week or so I have to reschedual Grubb. I honestly hope I can get to Grubb before hand.... I guess I should feel lucky that I have an opportunity to see both Dr's,,,,I am greatful for that! Like you said steph: I have heard so many amazing things about Dr Grubb, I would hate to pass up an opportunity.....and if he is not a stickler for tests then I guess I can go whether I do Mayo first or second. As of now I am off all meds..I stopped my DDAVP Last week, so I am only doing salt and electrolite solution.... But I am wondering if I should go off even the sale and electro drinks while I am there..... Will that swew the tests if I continue on the salt tabs etc while testing? I just want the best results possible since we are only doing this once ...definetly cant afford it again

Thank you Steph! I definetly want to see both dr's , I guess I am not sure what sequence to see them in. But if Dr Grubb is so booked up and his health is still not the greatest then maybe I should keep him on the 11th..... I have it booked. My ANS Dr told me I would get an appt very soon with Mayo... Hmmmm I wonder if I will...it seems to me from what I read on here many of you have waited quite a while..... Would you mind telling me a little about your Mayo experience? What kinds of testing they did? Did you go off all your meds? How were the Dr's there? Thanks for always responding to my posts and helping me..... Your advise always makes such a big difference

I just went to see my ANS Dr last week. He wants me to get a workup at Mayo with dr Low and already has spoken with him and faxed over my info so I am now waiting to hear from them for an appt. Problem is I also have a Grubb appt Next month. I was really looking forward to seeing him, but as it is right now I do not have enough info to bring him , and feel it would be a wasted trip until I get full results from mayo. I have learned many new things since last week, and there have been several changes, so I hate to go see Dr Grubb if I do not have the proper testing and information at hand. Although I am worried if I cancel I will never be able to get back in to see him... My question is: Will Dr Low actually suggest medications or will he just do testing and leave it up to my ANS dr here...? Have any of you tried to make a new patient appt with dr Grubb and do you know how long the waiting list is to see him? Thanks

Hi Nina - I'm not sure if you read my post last week on the water retention I was having and very High BP 150/100 same as you..also so irritable and emotional. I saw my dr on Thurs, and for me it was one of my meds , the DDAVP causing this to happen... I was in a hyponatremic state meaning that I had too much free water in me with very low sodium levels and thus gaining tons of water weight. I stopped the DDAVP 5 days ago, and have lost 7 lbs of water and my BP is back to normal range....... Have you had your sodium levels checked at all? Are you retaining fluid? I would definetly have some blood work done to see if it could possibly be one of these problems or one of your meds causing these problems... I had never even thought about my DDAVP causing me to feel so ill.... Its a thought. Feel better

Thank you Joyce and goldicdance - I see my ANS specialist tomorrow and am going to discuss possibly weaning down on the DDAVP..... I think it might be adding to the problem when I have too much fluid. Thank you to everyone who gave me input! I truly appreicate it

Amy - Thank you somuch for the links .. I'm going to check them out right now

Hi Tearose..Thanks the the reply ! Its difficult b/c of my hypovolemic situation its just such a crazy balance..... WHat excactly does a vasular Dr do? WHat do they look for? Thanks again!

Hi Mary - I am not sure how you react to artificial sweeteners, but there is a sugar free candy bar called Pure Delite.... It is sweetened with Maltitol.....which is the more natural of the sweeteners...anyway, I think they taste great,,,,,most health food stores have them and I have seen them in Rite Aid in the Nutrition Isle also... Just a though if you ar e trying to cut back on sugar, but have that chocolate craving like I do

Hi Mary - I hear you loud and clear about the costs.... I have not had a consult with mine in 3 months b/c of cost... Its hard.. As far as not eating sugar..in the beginning it is really difficult ever....you kind of go through withdrawls....but after a week or so you stop having the cravings and start craving other things... Believe me I was ( and still am) the biggest choc/sugar holic out there.... But I have to take a break from my diet every now and then...even though I know it makes me feel worse, It is hard to be sick with so many things and then deny yourself good food...so I splurge here and there.

Hi Mary -Many people can develop Systemic Candida caused by processed sugars ( even natural occuring sugars depending on sensitivity), as well as yeast containing foods such white products and processed foods, can cause Neurological like problems...which can make it hard to differentiate between what is what.... Candida also supresses the immune system as well which makes the body have to fight harder. I have been eating a yeast free/sugar free diet for about 8 years now. No doubt when I am on it I feel much better... Obviously not cured by any means, but it takes an enormous stress off my body.....I am much clearer, less symptomatic, immune system is better etc etc.... Its hard to follow all the time...I fall back a lot and get sick of avoiding so many foods. When I go back to my "old ways" I always pay for it..... I know everyone has different tolerances to sugars etc.... Have you ever consulted with a Holistic Nutritionist?

I forgot to add I am on one spray of DDAVP at night.... have been for over a year. Although this started to be a problem (not as severe) even before DDAVP.

I am wondering how many of you have this problem? I will be so dehydrated and hypovolemic...then after the spell is over My whole body fills with fluid. Arms, legs, everywhere...it feels like all th fluid goes in the tissue not the cells where its supposed to go. I feel like I want to pop when I feel like this, and around my period it s the worst. But unfortunately when I am so bloated is the only tine I feel good!! My ANS symptoms get much better, and I am functional, but am so uncomfortable and tight as well. Seems there is no happy medium. Can anyone offer me explanation for what is going on? Its either one extreme or the other for me. Seems my body has no clue how to regulate or distrubute fluid to the proper areas... Thank you for any opinions

Thank you so much steph for all your input It seems like mayo is the best... My Lyme Dr mentioned John's Hopkins as well.....Columbus was very nice when I called as well. I guess I just want to get to the bottom of my hypovolemia/ANS Problems once and for all...so I am willing to go/travel wherever..whatever it takes to get the best diagnses and best treatment options. I am really hoping Dr Grubb can help, and so thankful he is back to work. I just want to be armed with a few "game Plans" So That I am not sitting around another year on this....... This board has been invaluable to me for getting good information. Thank you to everyone who contributes here!

Thank You Kristen! Does she diagnose or just test? Also have you or anyone heard of the Clinic in Columbus Ohio? I think a Dr Novak heads the unit? ( same name as my ans dr here!) I am wondering about their reputation...... I called and they were very nice..interested in helping, but have not remembered any postings on that particular place.... Thanks again!

HOw about a surgocal technition..... Standing for hours during surgery, and having to be completely on top of everything, every instrument needed, every wim of the surgeon...wearing a Mask, and being in that hospital garb..lookign at blood My sister did this for a while WITHOUT POTS and almost fainted a few times. NOT FUN!!

Hi Guys - What would you consider the most thourough Autonomic testing lab in the US? Also which dr you would recommend seeing the most? I see dr Grubb on the 11th of April...I am anxious to see him and hopeful he will have some suggestions, but I know he will not do testing and feel I really need further things done b/c of the severity of my hypovolemia..... I spoke to a friend with Dyautonomia who just came back from a week of Testing in London.... It seems the knowledge they have there and the testing far surpass what is offered here.... Its discouraging at the least. Just wanted to get some of your input to whom would be the best place to try. Thank you for all your help and information.....it has really made such an impact on my health and finding answers

Hi Tearose! I have been to MAss Gen many times last year for my ANS problems..I saw the endocrine Dr;s there... But as far as I know there were not specialists...The endocrinoligsts had to do reaseasr and sent me to another hospita..he wanted me to see Dr Freeman ..forgot the hospital he is out of... But I heard soem not so great thing sbout him ( I could be worng) Thats when I did myu own investigatin and came across Bostom Medical. To compare both hospitals... MAss Gen is great, but I feel not as up to date on problems not well understood... I think if you have a clear disease precess such as diabetes, etc...they would be good, but they did not understand my dysautonomia at all. Again I could be off the mark, maybe things have changed this year... Give me an email or a call if you like! Have a good trip and feel well!!!!!

Steph - Again thank you so much for taking the time to respond.... ! I have used priceline... I think with not knowing how the flight will effect me, maybe I should go with the Hilton. ALthough I am going to do another internet search to see if there might be a deal I missed. I'm glad there will be some thing to do when we are there.. My husband is comming with me so he enjoys exploring. Yes I wish I could fax Dr Grub My records ahead of time but I guess they are not doing that anymore.... It is nice to hear that he will take all that time with me.... Its a lot to travel for a Dr, but I think this second opinion is well worth it.... Take Care

Steph - Thanks for the tip! I just booked at that Hilton..they wanted 120$ a night for regular customers, and 82$ for patents. I still though the 82$ was steep..I will check it out and see if I can do better. I there anythig to do in that area of Ohiio? Restraunts etc????? Just curios since I doubt we are going to want to sit on the medical campus all the time LOL Also: I was wondering exactly what records Dr Grubb wants to look at.. I plan to bring all my Autonomic testing results, and some blood work...but I have so many other tests..like water depreivation etc, and tons of Lyme tests which are very pertinent to my case...but does he really have the time to sit through and look at your recoreds?.... From what I gathered from his office you just bring them in with you to the appt, but it would have to take him an hour just to read through my test results.. Any suggestions?? Thank you so much for all your great advise!

Hi Mary - I'm sorry you have had to go through so much so far this year. My husbamd suffers from severe migrain so I know how incredibly debilitating they are. I am on long term abx for my Lyme disease, and it causes my hypovolemia to be pretty bad which is probably why you got so ill this time... Biaxin is hard on the system.... I hope you feel better, and can get your migrains under control again.

Thank you Steph! I remember you are on procrit. I am sorry you are having a bit of a setback with the ankle surgery. WOW! 7 hours?? Do you have to sit in the waiting room the whole time? I am just wondering if you can come and go if he gets that backed up. I feel much more hopful about all this now... I am truly hoping that the Procrit can help me...... and reasuring that you are not anemic and on it. Do you remember how long it took you for your insurance to finally approve it? Did you do anything specific to sway them? I have 1 denial already... I'm worried I wont get it. Thanks so much!!

Thank you SO much violahen and Bria!! You gave such detailed answers...... I feel much better about seeing Grubb.... Viola: Does he usually run on time with his appts? I am hoping that maybe one more opinion could spark something that my ANS dr here has not thought of.... And also help me along with my insurance. As far as flying..... Yes I will drink lots of fluids..... My problem seems to be that no matter how much I drink, my body does not allow the fluid to get into the cells..... I am on IV fluids right now periodically, so maybe going with a line in me would be the best since I could hook up after I get there. Also Are compression stocking uncomfortable to hot? Where do you go to get them? Thank you again for taking the time to reassure me that this is a good move.... and to listen to all my worries

This is kind of a bunch of questions jumbled into one....sorry...just didnt want to do 3 separate posts lol My first question is about Procrit: My Main problem at this point is the severe hypovolemic state I go into...... My ANS Dr is in the process of trying to get me approved for Procrit.....So far 1 denial....and he just resubmitted. I spoke to a freind of the family last night who is a nurse....when I told her that my ANS Dr was trying to get me on Procrit for the hypovolemia she said that it was very dangerous to use if you are not severely anemic and have a VERY low hematocrit... ( I am only slighly anemic and a slight low hematocrit) she said that the Procrit could cause even more problems b/c my hematocrit could go dangerously up... Now this REALLY bothered and upset me b/c I have been hoping and banking on this drug to possibly help this problem...and I have tried just about every other option.... For those on Procrit or Know about Procrit, could you please give me some feedback as to whether this is true or not?? My Next question is: I posted earlier about the test for Hypovolemia where you are injected with a dye to measure your blood volume... I know some of you have had this test and reassured me that the dye was not as toxic as the dr's in Boston made it out to be. I am considering having this test done now...so I was wondering if I could get some reiteration that the test went ok for those of you who went through it. I worry that the dye will give me some sort of long term problems... I wish the dr's did not put that thought into my head this summer.... My Last Question, but not least: I have an appointment April 11th to see dr Grubb. I am looking for a second opinion on my Hypovolemia... I am going back and forth this week as to whether I will get anymore anserws or thoughts than what I already have from my ANS Dr Here. My case of hypovolemia seems to fall on the severe side... For those of you who have seen Dr Grubb< Do you feel the trip is worth it? ( I am flying from CT) Which leads to me to 1 more question; Last time I flew last year to Las Vegas and I went into a really bad episode with ANS/hypovolemia afterwards.... I wonder if it was from the plane flight. What is everyones take on flying with Hypovolemia.... I hate to fly again if it might trigger something. Any knowledge or suggestions? Sorry for so many questions in one post! I appreciate any help or advise I can get. I know you guys have a lot of Knowledge on all this. Take Care