Stella Marie -MSA

els · January 12, 2006, 3:00pm

Hi Stella, I read your post regarding your diagnosis of Multiple System Atrophy from 1/10/2006. What you posted sounds just like me! I am 32 years old and and I was diagnosed with Multiple Sclerosis in 2001. I have a lot of numbness and muscle spasms on the right side of my body due to this. This past summer I started to feel really drained and tired all the time. My family physician started to do all sorts of tests but everything came back fine. Then one day in august I got up and passed out in the middle of my living room floor and was unconscious for approx. 30 minutes. I went to the hospital with an extremely low blood pressure and low heart rate in the 30's. I spent 2 weeks in the hospital and ended up with a pacemaker for bradycardia (low heart rate). Since this stay I have been back to the hospital 4 more times for low blood pressure and passing out. One of these times I ended up pulling out the leads to my pacemaker and had to have a revision done, which was very painful as they had already scarred in place. I take Florinef and Proaminatine to keep my blood pressure up but sometimes for not reason it just drops. Since August I have noticed tingling in my left leg, foot and hand which is new almost like a pins and needles feeling, some incontinence but then sometimes I feel like I cant go at all, fluctuations in my temperature one minute I am hot the next I feel cold, lightheadedness when I stand, visual problems, some tremors and rigidity in my left foot sometimes. My Cardiologist has stated that believes I have Shy-Dragers which if I am correct and from what I am read so far this was renamed to Multiple System Atrophy. Also that it is extremely difficult to diagnosis. I live in Missouri so I would have to travel several hundred miles to see an MDS. Did they do your tests in-patient? Where did you go to get a diagnosis? I also have read that most peoples' cardiologists are the ones who do diagnose this disease at first due to the heart problems that it causes, have you heard of this? I don't mean to bombard you with questions, I am just relieved that there is someone out there going through what I am. Any help or advise you can give me would be much appreciated! Thank you~ elisha

Stella_Marie · January 13, 2006, 5:09pm

Hello Els...
You are right - we sure do have similiar symptoms. I know exactly what you are going through and how you feel. And yes yes yes - cardiologists are frequently the people that uncover MSA. If you ever want to chat - let me know. We can arrange a day and time. I would love to compare notes with you. It sounds like we are traveling the same neuro-path! I would delighted to help in any way posible. Maybe we could set up a group chat for anyone interested in aytipical parkison's and multiple system atrophy. Regarding testing, I have done blood, genetic and tilt table autonomic.

Lived each day to it's fullest. Blessed are the caregivers - for there is a special place in heaven for them and my husband will be sitting at the head of the table.

Stella_Marie · January 13, 2006, 5:09pm

Hello Els...
You are right - we sure do have similiar symptoms. I know exactly what you are going through and how you feel. And yes yes yes - cardiologists are frequently the people that uncover MSA. If you ever want to chat - let me know. We can arrange a day and time. I would love to compare notes with you. It sounds like we are traveling the same neuro-path! I would delighted to help in any way posible. Maybe we could set up a group chat for anyone interested in aytipical parkison's and multiple system atrophy. Regarding testing, I have done blood, genetic and tilt table autonomic.

Lived each day to it's fullest. Blessed are the caregivers - for there is a special place in heaven for them and my husband will be sitting at the head of the table.

els · January 14, 2006, 4:08pm

Thank you Stella! This is such a rare diease it is a relief to find someone to relate to. I would love to compare notes and chat anytime, just let me know what works for you my schedule is open. Setting up a group chat would be a great idea for aytypical parkinson's. ~elisha