Faith14

Hello Deb, we'll have to go back alittle for this leg pain, not being here long and all. I just thought I'd drop a line that I suffer the same thing...when I had the tilt table test back in Feb. my doctor told me that my legs weren't get the right about nerve impulses...which could be due to blood supply. So I had to start wearing those Surgical Hose for my legs, suppose to help my B/P when it falls out. I will be honest, about the only thing to help is to rest my legs. I wish you the best I have suffered with leg pain and heaviness a lot of years. We don't know if it's the Dysautonomia or the MS. Good Luck to you Deb. Southern Blessings, Rita

Hi Everyone, after reading Ernie's post on excercise thought I'd go ahead and ask: I have been wondering if the bp is yoyoing will the Dr allow walking on a treadmill??? I had physical therapy already this year and just began walking again ( today as I grap everything to hang on) this was due to my MS too. Does anyone else try to do the treadmill?? Thank You Southern Blessings, Rita

Hello Kimberly, I feel dumb asking this, but can you explain what this IV Hydration is please. Thnk You, Rita

Hello, I have been on Neurontin for quite sometime for my MS and Lupus I take 1800mg daily...I was slowly increased to that dosage though. I do fine on it, but my friend said she did have side affects so guess it's truthfully a trail and error thing for everyone. I have been on and off since 2000, oh I have another friend she takes it for Fibro. and does great with it too. Good Luck hope this helpd a little. Southern Blessings, Rita

Hi, first of all let me say I'm so sorry for what you are going through. I have to agree with...steph, be persistant. Now you know that these doctors have appoint left open for emergency purposes for just this type of problem that comes about. I would find a Doctor with little more experience about your condition. I know that when they sent me to my first Cardiologist...he told me first thing I don't think I'm the one for you, let me set you up an appointment with someone in this field...then apologised to me because he couldn't help me...I told him I appreciated his honesty. So moral of the story their out there so hang in there and good luck to you. Southern Blessings, Rita

Hello Amy, and hello all, finally made it back in here...well like you Amy I am either high or bottom out. My cardiologist finally got my med. to control my BP, then poof it out of the blue began to bottom out. Sunday I was up all day and yesterday couldn't stand up with out feeling faint. I am just about at my wits with this POTS. I'll just take each day as it comes...best wishes to you. Southern Blessings, Rita

Hi veryblue, I was on Propranolol for 9yrs for several different purposes. I was on pretty the same dose for all those yrs, until last year, my B/P became uncontrolled. They had me on 60mg a day, increased me to 80mg and had to put me on fluid pill at this time too. My B/P began to bottom out, had to be taken off the fluid pill and increase to 80mg 2x day was such a yoyo. I was up and down, the doctor said he just didnt get it, until my Neuro suspected this. I see a cardio now he put me on Toprol_XL (started out 25mg) and Diovan HCT. I did great HR was still not where he wanted it to be so went up to (50mg). My HR was still staying up but my B/P began to fall out again. I was then taken off the Diovan and incresed to 100mg Toprol-XL and now I'm a big yoyo again. Yesterday everything was up and today I'm falling out again. I am learning this must be par for the course Veryblue. I do wish you the best and if you learn any secrets I open to suggestions too. Southern Blessings, Rita

Hello tearose, I wish I had seen this before my reply on your post to me. God Bless you for your tender-heart. Sometimes the best medicine is to open up and release fustrations. Your letter was put together so beautiful and stopped and made me think abit and also know I'm not alone. We can't change what we're dealt in life, but how we do handle it and is ours. I pray they will come up with some positive answers for you, in the mean time you keep that strong faith of yours okay. Please keep me posted on how things are gong. Southern Blessings, Rita

Hello tearose and thank you for your kind reply. I had an appoint with my Rhematologist today that treats my Lupus dx in 1987. Well they believe it was just MS all along, I'm not surprised this is what all the doctors think now. They do all agree that I surely have the Dysautonomia, now what to do with as you say. I pray that the cardiologist will give us more help. Everyday is it's own with this stuff, never know until I get out of bed. It's okay I have many years of Chronic illness and my Faith is strong, I will cope with what ever is handed to me. I'm so thankful I found this site, I also belong to the MS site too so I have alot of wonderful support. THANK YOU AGAIN Southern Blessings, Rita

Hello Briarrose, let me introduce myself, I am Rita and I was dx from tilt table test Feb 2 of this year. This came after my dx of MS almost 2 1/2 yrs ago. My friend checked this site out for me Judy that is. I don't know alot about the disease and I also have Lupus, I just can't hardly believe this is possible, too much ya know. I go to my first cardiologist appoint April 7th thinking after reading some of this what a wste it may be. I am still pinned down to my w/c mainly due to my B/P popping up there and my heart rate. My therapy is still difficult they are affraid of the B/P going up. So I have so much I don't understand and seem lots to learn. They dx me with all these things and I'm so unsure, I do have several lesions on the brain and told they think??? I had a stroke at one time. The symstoms are so much the same, so maybe it could all just be one. I wonder if anyone else has had this same difficulty??? Sorry I 'm rambling. Thank you for whatever help or advise please. Southern Blessings, Faith14/Rita

Hi Mindylee1, I'm new here too and I am at a loss. Today has been one of those difficult days for me. See I have been DX with Lupus and MS in 2001. This past year my BP was yoyoing so bad they run an Autonomic Reflex Test, boy did I fluck that. I was put in the hospital right then, my BP jumped up so high. I go from one extreme to the other. I have been stuck in a W/C since then before this I did use a cane. My pain is unbearable if I try to do anything strenous, and my pulse or BP goes wacko. My sister lives with me now along with my husband and I, she has been great. I have been having a very difficult DX I wonder if the doctors even know what they're talking about. I take so much Meds now to get my BP stablized. I am having to adjust to us building a handicap house. I feel as if this is somone elses life other that mine, ya know??? I keep sayig I'll be alright tomorrow, and I still intend to keep positive and with the help of my O/T and P/T we will get back, well at least to the cane huh??? So I'm with ya Mindylee, how to become the shock of it all, and making sense of it all. Looking at all this site it all does make better sense to me. in the mean time I pray for all the best for you, and get to feeling better. Southern Blessings, Rita