Jersey Girl

I don't have the answer you are looking for but would be very interewted to know as well, as I am dealing with some mild muscle wasting on my entire left side that no one seems to be able to explain despite many MRI's. My muscles are also sonewhat hypertonic on the left side and give me pain mainly at the base of my skull, neck, shoulders, upper back and rib cage (front and back) and I don't know if it is related to the muscle wasting. It's weird because my face has the opposite problem with a slight droop. When I first became ill I remember telling the doctor that I felt weak on the left side (which he dismissed because he couldn't explain it) and my muscles seemed more flaccid. It felt worse than anyone could see yet I had an entire stroke workup three times over the course of 6 months which were all negative. I would definitely like to know how it relates to POTS. Martha

Dear Jessica, Glad to hear that you're feeling somewhat better. I also was wondering how you had been.Glad to hear your holidays were good. I was in Florida with my Mom last week and the weather was fairly pathetic. Aprilmarie, that's great news that you're so far along and doing well. I hope we will be able to see the babies pictures soon from the website. Martha

I was told by an autonomic specialist that one should drink 1 gallon of fluids per dayand have frequent salty snacks. I also drink Propel and usually have one (16.9 ou) before I get out of bed (or finish it up soon after getting up) and another bottle mid-morning in addition to my decaffeinated tea with my breakfast. I don't know anything about ADH levels but I also dump fluid continuously throughout the day. Martha

Emily, I hope you feel better soon and can get some answers from your doctors soon. I know that I am sensitive to many foods and do better with slow roasted, plain foods. I also don't tolerate foods with a high glycemic index, i.e.most desserts (which taste good on the way down.) Take care. Martha

You Brits are too funny. Ben, you're so honest. I love how the docs won't see you again in the UK ,because they say the condition is untreatable. I have been told that there is treatment per se but no "expert" I've seen says that the treatment only helps a little when you call them back and tell them you're still dizzy in spite of the fact you've done everything they've suggested. Hang in there. Martha

Your photos are great and remind me of how beautiful ( and hot) it was in Tulum when I visited for a day last year. The sun is definitely hotter there! Glad you had a good trip. Martha

Hi Jillybean! I could only tolerate Florinef 3 days because it raised my pressure so high and I felt like I was going to have a stroke, but I know some people really do get help from this medication. Gayla, I was also told initially that my symptoms were typical for women my age as well, but most of my friends are older than I am so I also knew this was not true. We weren't born yesterday! Happy New Year! Martha

I had MRI'S three different times because my initial docs were sure I had MS. and I recently just had another MRI of my lower spine because an orthopedist also thought I had MS. I was initially also put through a spinal tap as well because of their suspicions. MS is a lot more common I guess. Martha

Hi Ben. I agree that this site has been such a support to most of us who otherwise wouldn't have a chance to share. Most of us have been misdiagnosed initially and then been basically told to suck it up as well (I love your reference to the English stiff upper lip). I would like just once for a local physician to acknowledge how difficult it is to function with this condition. Happy New Year! Martha

HAPPY BIRTHDAY! albeit belated. Hope it was a good day. Martha

I have only recently begun sweating a little again after 2 1/2 years. I actually thought it was a positive sign that something might be coming back. I did have a vaginal discharge for a while when initally ill that no one could explain except to say that it was probably related to excessive extrogens. My eyes burn, very dry, especially in this cold weather with forced air heat. Martha

Dear Katherine, Thanks for being such a caring, well-informed member of our group. Martha

I'm not familiar with that medication at all. I have been back on Neurontin, 100 mg. three times a day (a small dose) for two weeks now as I think I have had increased head, neck and shoulder pain and generally more instability from the changing weather--very, very cold here. Hope you can find some relief. Martha

You should consider requsting a consult with a nutritionist. Possibly your oncologist could arrange this for you. 10 years ago I developed gestational diabetes and found a nutrionist's help extremely valuable. Take care. Martha

HAPPY HOLIDAYS AND HAPPY NEW YEAR TO YOU AND EVERYONE ELSE. I also wish for better health for everyone this coming year. I am definitely a litlte jealous about you're going to Playa del Carmen, which I thought was like heaven on earth for one day last year. You definitely deserve a break, as we all do. Have a wonderful trip and don't forget the sunscreen! Martha

Dear Tearose, That's some fever you have. Are you sure it's not influenza? You really do need to take it easy now. I also empathize with you about wanting to lead a normal life. A lot of joy comes with the holidays and you don't want to be left out. And I know it is hard to pace onesself all the time because it seems like you get so little acomplished during a busy time. Anytime I have more than about 2 people over I am extra dizzy from the sensory overload extra time on my feet. I assume you have seen your physician because you seem really ill and have had your nose cauterized. If you're not getting better, you may need a return visit. Stay in bed, put on the television and try to relax--I like echinacea tea when I have a cold. Let your family take over for a few days. Feel better . Martha

That is great news that you're back in your house for the holidays. My mother flew up from Ft. Meyers twice to stay with me--once in August and once in early September--to escape the hurricanes. Her building had thousands of dollars of damage and the frames of her lainai windows bent with the wind pressure which allowed the carpets to get wet--so she is just finishing up with the insurance company. Things can be replaced--people cannot. Take care of yourself. Martha

Dear Angela, You won't be that far away from NYC In New Jersey. I think we have done more in NYC from NJ than when we lived in Manhattan many moons ago. I agree that it definitely a fun place to live for younger than I am , but I know on days I feel particularly rotten, I am glad not to have all the extra sensory overload. I hope your move goes smoothly. WELCOME BACK TO NEW JERSEY! Martha

I feel like I've taken a small step backwards because I needed to go back on Neurontin. I am only taking a small dose-100 mg three times a day, but my neck,shoulder, back and leg muscles have been in a total spasm and I've been more dizzy than usual. 2 1/2 years ago I was prescribed 400 mg four times a day because you could've ironed a shirt on my neck and back muscles--it made me so exhausted (or I WAS so exhausted) then that I tapered off of it after a year and have taken it occasionally since. If I take a hogher dose it gives me palpitations of the worst kind. I am thinking of trying the Klonopin as many on this forum seem to get relief from it. Just curious if anyone else has found relief with Neurontin. Martha (with POTS)

Welcome BUTTERFLY from Australia! We're really becoming world travelers on this site. Hope you're feeling ok. Martha

Morgan, I am so sorry to learn about all your hearing issues. Hopefully you have a good doctor that can stear you the right way. Keep us posted. Martha

Dear Ernie, That's great you got out to shop a little --which can be a culture shock if you haven't been for a while --that's how my husband knew I was first really ill because I refused to go to the mall. If I do go to the mall anymore I am usually hanging off his arm because I get such bad sensory overload and am quite dizzy. I don't know what that woman was thinking when she said that to you. Thank goodness there are generally really nice people in the world who will help you in times of need. I hope you continue to make progress. Martha

Dear Nina, CONGRATULATIONS! That's amazing progress. You will just love Playa del Carmen. We stopped there for a day off a cruise last December and fell in love with the place. We arranged for a private tour of Tolum so I wouldn't be even more stressed. Make sure to purchase the tram both ways to and from the ruins--it was very hot. I wore my australian neck wrap. And bring plenty of salty snacks and cold drinks. And a large sun hat. There is a Subway at the entrance but it was the worst one I ever ate at. Also Mexican time for meals threw me off that day--I was expecting lunch at my usual time (12 N) but the original guide wanted to have lunch at 3 p.m. Hence our own tour guide, fairly inexpensive.

Hello Ayelet, I was in Israel 12 years ago during Chanukah and think Israel is the most beautiful country. We visited the caves on the Mediterranean in Northern Israel and they were gorgeous. I am curious to know if you have been prescribed any medications and what effect they have had on you. During hot weather I carry cold drinks ( you could even freeze one the night before) and I drink like a fish. Any cold wet cloth around the neck will help too. I also limit my time outdoors during very hot weather and stay in airconditioning. Good luck, Martha

Like others on this forum I have only reacted to iodine in the past. I have Xanax as needed and for me, 1/2 of a 0.25 mg tab is plenty. The loud noises (jack hammering) during the testing are the only negatives I have experienced. ( I am noise sensitive) It's a good thing the tests are done lying down or we'd all have a problem! I have been asked before the tests if I want ear plugs or music and I will ask for both if possible. Good luck--the tests aren't so bad--it's the findings that may be worrisome, but we can handle that too. Martha