This topic contains 5 replies, has 1 voice, and was last updated by Pam 4 years, 4 months ago.
June 9, 2014 at 9:44 am #1288
This is my first time posting to any site. I have been dealing with autonomic issues for about 2 years. It was not until January of this year did anyone even speak the words dysautonomia. Back in September I ended up with my first syncope and was hospitalized. I was in the hospital for 4 days because they could not get my BP up even with fluids. I was running 40/60. They did all types of tests and thought maybe Addison’s. The put me on florticotisone and sent me to my primary. My primary did not believe I had OH. She did my BP lying and sitting and said it was the same as standing. She said I had stress and put me on anti anxiety. I the ended up in the hospital again with chest pain which was severe tachycardia from climbing a flight of stairs…. I had never experienced it like that before. The good news is that they sent me to the most amazing cardiologist. He was Irish and has the best bedside ever! He spent over an hour with me hearing my history. I also have celiac disease. He asked me if anyone had sent me for autonomic testing. Based on my reaction to the word, he new I had not. The next several months have been all kinds of testing. My tilt test came back 22/33 after 10 minutes up. Sweat test had irregularities. I consider myself lucky because I am in the early stages of whatever I have and I’ve already been able to see a neurologist. She has diagnosed me with OI and tachycardia …..but still more tests. She pulled 21 Giles of blood to rule out every disease none to man :). But I have not been back for my next appointment ….end of this month. Everything I have read with all the symptoms I have, point to POTS or MSA. I live just outside of Boston so have excellent access to health care. The difficult part is getting the appointments. Each time I see someone it is months before the next appointment.
My question is. When people had early symptoms of MSA, did they come and go. Or once you experienced a symptom did it stay with you. For instance I get awful coat hanger pain that occurs at night and in the morning. It goes away by about 2:00 in the afternoon. I will get it severe for about a week or two. Then it is mild or gone for a few days or for about a week. Same with visual problems, and sweating. Sometimes I’m in the heat and can’t sweat and feel nauseous and faint. Then sometimes when I am in heat I can sweat. I have terrible cold intolerance. I sleep with an electric blanket even when it is hot. I can not find anything that talks about the early stages of MSA so I can not compare what I am experiencing. All the POTS stories and sites that I read sound like my symptoms then I read the MSA stories and sites and I identify with them.
I have days where I feel like I have the flu and the ran a marathon. I can’t move my body at all. Then a few days will go by and I’m much better. This is all so knew for me. I turn 50 this year. I’ve been very active my whole life, athletic…I ski, snow mobile, boat, water ski, drive my own motorcycle! The florticotisone has helped significantly with the dizziness and unbalance. I’ve been extremely independent my whole life , but lately to take a walk is an afford most days. I am Lucky As I am still able to work, I have an amazing job, but it’s demanding. I cant do half of what I used to do. I am a bit scared if this is MSA, I will not be able to work in a few years. I’m a single mom with 3 teenage children and college is creeping up fast. Any insight for those that can talk about the early years of the disease would be very much appreciated.
PamJune 10, 2014 at 3:51 am #1289
Pam – I’m sorry you’re going thru this – hopefully you don’t have MSA.
Most of my symtoms, once they started, stayed with me. This is a very individual diesease however. My first symtoms were different from yours. These include fatigue and neck pain which are stil very mucih bothering me. Constipation and urination problems came on a little slower and had brief off periods where it didn’t bother me at first. The only symptom that I remember having that dissapeared was I got reaally stiff while in the car whhile driving for several months and it took me 20-30 steps before I could walk well again. Then it stopped doing that and it was 3 years or so before I became stiff all the time.
Gordon in Oregon
Dx 5/2012June 10, 2014 at 4:02 am #1291
Hi Pam, My name is Pam Bower and I’ve been providing info on MSA via the internet for quite a number of years. There are MSA support groups in the Boston area, both online groups and face to face. You can check the Support tab on my website: http://www.msaawareness.org There is also a non-profit for MSA called the MSA Coalition http://www.multiplesystematrophy.org We will have a conference in Washington DC on October 17 and 18. More details will come out soon on our web and facebook pages. Best regards, PamJune 10, 2014 at 5:28 am #1292
For one of your answers as far as early symptoms and these coming and going yes it does happens. Most of us I say who have MSA have good days and bad days. I had symptoms starting with ED, restless leg syndrome then urinary dysfunction then OH and ataxia. I went to 4 neurologist over 4 years before one connected the dots and one more testing for a week. Since my diagnosis is May of 2011 I have had the above symptoms plus now gastrogaresis, constipation and joints which seem to get frozen or sticky. Join the yahoo shydrager syndrome group we have a lot of nice really caring people were you can get good advise and vent your anger at whoever or whatever. I find your BP readings really weird because 23/30 you would be out and 10 minutes well does not make since. I passed out in less than 2 minutes. Hope to hear from you. Oh the theory why some MSA symptoms come and go is that neuro transmitters are malfunctioning in the cerebellum but why not yet known except there seems to be a build up of some sort of protein that inhibits neurons. I had a spinal tap and had to be tapped 5 times because my spinal fluid was so thick. Later…
bookguy50:TXJune 11, 2014 at 4:34 am #1290
Thank you Gordon!
Stiffness seems to be one of my biggest issues.
Appreciate your information.June 14, 2014 at 11:21 pm #1293
Thank you John and Pam for all of the resources you have provided.
Just a clarification on the BP…..it fell from 80/60 to 33/22 after being up for 10 minutes. What was strange was it hung at 80/60 for those 9 minutes then plummeted so fast While it was falling that low she flipped the table back and I was close to passing out but was able to stay somewhat alert. Took a while to feel better again.
My gastro, and vision stuff seem to always be present, what comes and goes is the muscle joint stiffness. Most of my stiffness is in the back of my head down my neck across my shoulders, and the down the center of my chest. I have lost most of my range of motion in my neck on my right side in the morning but by night time I have gained about 3/4 of it back.
Anyway, thanks you both again. I am going to follow all of the links and join the group. Appreciate you reaching out. From what I have read and heard it is a long process. Patience is not a vertue of mine.
From someone who went 24/7. I find it strange and difficult to have been forced to become so idle.
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