And the Doctor Says…
Posted by juliebernal | Filed under Blood Pressure/Heart Rate, Chronic Illness/Rare Disease, Multiple System Atrophy (MSA)
May 10, 2012
I have been avoiding my situation and I wasn’t ready to talk about my current health issues until now. The past four weeks have been filled with confusion, questions, sadness, tears and moments of facing what my future may (or more so…may not) hold for me. I am finally to point where I have gotten past the heartache of my current news and I am finally able to think with a clear mind…and able to focus on “right now” instead of tomorrow.
I have been working with my Heart Rhythm Specialist and my Pacemaker Technician for some time now, trying to adjust my heart’s pace, working with getting the correct dosage of heart and blood pressure medications. I have been very pleased with my doctors on my case and they have been working very hard with me to try to get my issues resolved the best way they can. Last I wrote, I had said I was starting to see improvement in my blood pressure issues. I believe the improvement only lasted two weeks. I started to notice my legs were getting weak and I was still getting dizzy. I had a follow-up with my doctors and I was told that they believe my issues were happening from prolonged pancreas damage that caused permanent damage to my nerves. I thought, “Okay, I understand how that could happen and my low blood pressure started over two years ago right after having my second ERCP. It’s been an issue ever since. The chronic inflammation caused damage. Okay.” I was told that for this reason, my body was not responding to my medications as it should. I left that appointment with a slight adjustment to my medications and I was feeling hopeful.
After a week, my blood pressure continued to get worse and I felt very ill. So I felt the need to do some research on what my doctor was describing hoping to find something to help my symptoms. What I found was a rare disease called Multiple System Atrophy (MSA) once also known as Shy-Drager Syndrome. The more I read, the more I started to cry. I read that it had no cure and the prognosis is fatal. It is a progressive neurological disorder that causes damage to the nervous system and the brain. I went on to read about symptoms…orthostatic hypotension (low blood pressure upon standing ), dizziness, weakness and falls, tremor and shaky movements, rigid muscle movement and stiffness, loss of balance, syncope, sleep problems, nightmares, neck pains, headaches, difficulty walking, problems with heart rate, body temperature and sweating issues, cold hands and feet, bladder problems, sphincter problems, breathing difficulty, constipation and digestion problems, swallowing and talking difficulty, sore throat and hoarseness, impaired and spidery writing, becomes hard to eat, lack of facial expressions, depression and random out burst of laughter or crying. As it progresses, it can cause the person to be trapped inside their own body, unable to communicate even though that person still has a normal and full-functioning mind. Many can end up in a wheelchair and unable to walk or move. At end stages hospice is often needed. There is a whole list of symptoms. Not everyone will have all the symptoms, but it is a progressive, disabling horrible diagnosis…it does not get better with time. It’s classified as a cousin of Parkinson’s disease. Most individuals with multiple system atrophy with orthostatic hypotension die within 7 to 10 years after the first onset of symptoms but there have been cases of some living up to 20 years after onset. I had to stop reading. I thought about my health: I’ve had constipation problems and food intolerance since I was five but was a pretty healthy kid. My first dizzy spells and breathing problems started 14 years ago. My first symptoms for heart rate and chest pain problems started 10 years ago shortly after getting mono. And as far as the first time having problems with arm and leg weakness, tremors and very cold feet and hands started six years ago right before getting my gallbladder out. I had attacks where it was like my body was shutting down – somedays I was unable to move my legs, arms and hands and then my body would go into full spasms. My hands would clamp up into looking like a deformed claw and I would turn ice cold. This finally stopped happening after my first ERCP. My blood pressure issues started over two years ago after waking up from my second ERCP and when I ended up getting chronic pancreatitis it got worse. So when did my first symptoms start? Good question. I can’t believe I had never heard of this disease before. I didn’t want to worry myself, not until I heard from the doctor to see what his thoughts were. I didn’t want to put ideas into my head.
But I also had some blood work done the weeks before to help rule out adrenal failure. I had many of the symptoms and was thinking, if I had that, symptoms may improve with a simple pill. This was a test I had asked my doctor about, though he thought it was unlikely based on what he already knew – but he still ran the test for me. I was feeling hopeful until I was given the test and I didn’t feel better from it, but it made me feel worst. I went home after that and tried to take my mind off of everything.
A week later. I remember going into my doctor’s office. I was by myself. My doctor was out of state and I was seeing his wonderful nurse practitioner. She came in and asked, “How are you doing?” I looked at her and said, “No, not good. Not good at all.” She told me she had the results of the adrenal test. She said it was normal. I looked at her and said, “Oh, that really sucks. I was hoping…” She said, “So was I.” She called my pacemaker guy to come in and look at what was going on. We talked. He said, “Sounds like you may need to have another lead put in.” But then he slowed my heart down while I was talking to the NP and I almost passed out. He said, “Wow, I hardly slowed you down. You shouldn’t be getting so dizzy from that. That is rare. I only see one case per year with this problem. And your heart is doing this many times a day. No wonder you feel so bad.” Oh boy! Another thing to add to my “rare” list. I remember telling them that I was having a hard time with my legs and that they felt like jello and were getting really heavy and I was having a lot of neck pain and headaches. It was a weird moment where my NP and pacemaker tech looked at each other. I thought, “Okay, what is going on here?” I then got a bit worried and said, “I want to know the name of what the doctor was saying that I have. I want him to think about sending me to see a neurologist and I want to know if there are any support groups out there so I can talk to someone else dealing with chronic low blood pressure.” She said she would call the doctor and see what he had to say. She walked back in and she said, ” Well, he believes you have…Multiple system atrophy.” My mouth fell to the floor. And I said, “He thinks I have MSA?” She said,”Yes.” I said, “Really? He thinks I have MSA? You know that it is death sentence, right?” I started to cry.
The nurse walked in at that moment and took my blood pressure sitting down. Then had me stand. She told me to sit back down before I would pass out. My blood pressure dropped way too low and I almost fell. The nurse said, “Yup, orthostatic hypotension.Your numbers are always so low. You just simply amaze me and shock me every time I see you.” I was a mess, just a mess sitting there…alone without family but I didn’t cry for very long. I collected myself and we talked a bit more. The pacemaker guy looked at me and said, “Your pacemaker seems to be working fine and a second lead won’t solve any of the issues here. There is nothing more I can do to help with that. The pacemaker is doing it’s job.” The NP told me that it is an electrical problem with my nerves and my heart. It’s not in my head. It is real and it’s not something I can control and it’s not anything I did wrong. She also said that I cannot go back to work with these issues and doesn’t know if I will ever be able to work again. I am now fully disabled. After talking for awhile, I was told to come back in a week and I would talk with the doctor about a plan of action and he was going to be thinking about things…even though I already knew there was no cure – I thought, “Okay, we are going to take this one step at a time.” As I went to check out, I become dizzy and shaky. My nurse passed by me and asked if I was okay and told me I looked really pale and said she was worried about me. I was trying to check my blood sugars. I said, “It’s either my blood sugars or blood pressure.” Blood sugar came back at 60. She had me sit down and I drank a full can of coke, and ate some fruit snacks. 10 minutes later…only up to 70. I kept eating. Finally got my sugars up to 100. What a day, what a day it was! I went home, waited for my husband to come home from work. And then fell apart in his arms as he walked in through the door.
I think this so far has been some of the hardest news I’ve ever gotten. It’s been hard on me, hard on my family and hard on my friends. So, that is my news! They believe I have Multiple system atrophy (MSA). I am being referred to one of the best neurologist at Vanderbilt. So far there is no way to fully prove that one has MSA until death. There are no known cures. It is not a disease that will get better. I will continue to update as I learn more. I would appriate any prayers, thoughts and understanding as I continue to battle my health. And as my disease progresses, I can only hope that my family and friends remember that I am still the same person even if I can’t fully express it. I have already noticed the effects on my legs and I have gotten myself a cane. Thus far, I’m using it 50% of the time around the house to help with dizziness and leg weakness. I still have some good days, so I am very happy with that right now. And, I don’t look like a sick person to most which is nice. But my blood pressure and heart continues to cause problems and pain. I’ve been dealing with the news the best way I can and I’m making it a point to enjoy my life the best way I can. I did see my doctor a few weeks ago and he was really great and my husband went with me. He suggested wearing compression stockings and drink more fluids. This has helped some. I asked him about the disease being labeled as fatal, and his response was, “You know, we are all dying.” But the way he said it kind of made me smile and I laughed. I said, “That is true, and after everything I’ve already been through, guess I’m lucky to even still be here.” I am in good spirits and a part of me is still hoping that maybe it isn’t MSA. But only time will tell. But for now, I’m going to focus on today and not what may happen in the future because it’s all about the simple things in life.
Thanks for all the support, love and many kind wishes.
2013 Update: The MSA diagnose is now believed to be dysautonomia or autonomic dysfunction.
Tags: Cardiac Pacemaker/Ablation, hear rate, low blood pressure, MSA, Multiple system atrophy, neurological disorder, Orthostatic Hypotension, Parkinson's disease, Rare disease, Shy-Drager syndrome
May 10th, 2012 at 10:28 pm
Dear Julie,
You are always in our prayers. You are true courage and our inspiration. When Kevin has seizures and he feels too weak to move and I pray, I pray to be like you, to have your courage and positive attitude. Perhaps it isn’t MSA, maybe you have a mitochondrial disease (it is so multifaceted). Maybe you can try the mito cocktail. Ask your doctors first, but I don’t see how it can hurt. We love you!!!
May 11th, 2012 at 12:27 am
Julie,
I am so sorry and will be keeping you in my constant prayers. You are such a brave and inspirational person. Someone I truely look up to. Please know that I am here for you and if you need anything please do not hesitate to ask.
Sincerely,
Kathy
May 12th, 2012 at 1:03 am
Hi Karen. Thank you! You have been such an amazing friend and support to me. I’ve been thinking about Mito too – have been for three years. I’m thinking about maybe getting tested for it. Did Kevin have the muscle biopsy to confirm? And when they did his ablation, what kind of arrhythmia did they confirm he had? They found that I had two kinds. Atrial Ectopic Tachycardia (AET) and Inappropriate Sinus Tachycardia (IST). I had a tilt table test and they said the IST was caused by failure of the autonomic nervous system. I have been doing some research and it sounds like a mitochondrial dysfunction can actually play a role in multiple system atrophy. So, it could be very possible that I may have Mito too. I think of you and Kevin often and continue to pray daily for his health. Much love!
May 12th, 2012 at 1:05 am
Thank you Kathy for the kind words! You are so wonderful. I think of you often! I know you have been battling a lot right now too. So, I’m here for you too if you ever need to talk. Hug!
May 13th, 2012 at 2:20 am
all of this insanity will seem like a bad dream soon. GOD is here with us at all times. you just keep talking to Him and ask Him to take what He needs and give to you what He wants you to have. i know its hard for us sickly to understand what will could He have that could include such terror or suffering and i can only suggest your Bible as many prophets even had illnesses. Luke was a physician, also. people have been having things happen to them for ever and we are special, just not anything different under the sun. He says no one will suffer anything new that no one else hasnt had to deal with at some point. and remember, our spiritual bodies that we were in before we were born thru woman into these flesh and weak bodies, will once again be ours and there will be no pain or hunger or any bad thing. i know youre scared and i am too but He loves you and me and He has made us so many wonderful promises. i say that if i give more of myself to Him, He will give me more of myself…my real, blessed self. i want what He wants. He doesnt want us afraid, stressed or anxious and tells us to trust and be calm and to love Him as He is our Father. He knows exactly what you endure and there is some reason… your strength gives strength to others, me included. we come together in large numbers like this and He loves that but it also helps us to make it thru perilous times. lean on me, lean on Him. He asks you to. He is in control…not us. He will teach us each that whether we like it or not. give it all to Him. He wants us to fall to Him and love Him and let Him lead us into thatever He is wanting. when we do that, He changes us and makes us better. we become different because we get closer to Him and are there for Him, wit the understanding He has been trying to teach us. i would think that by saying i was in total control of myself, that that statement would hurt Him…its like saying i dont think he is capable. i know He is. He can do anything. any thing… i hope and pray His will for you and i is healing and to end our suffering but if He has something else planned for us, it can only be amazing. i only ask for pain-free. and remember the parable of the fig tree where He returns after isreal became a nation…that generation born right then is the last generation to be. well, that oldest person right now is what…around 65 so it wont be very long until He comes anyway and how gorgeous.
May 17th, 2012 at 2:38 pm
I am so sad to hear the news. I will keep you in my thoughts. You are an inspiration.
Amanda
May 20th, 2012 at 2:47 pm
I’m so sorry to hear the news, so sad. I hope that that’s not really the case though. Hang in there. You’re in my thoughts and prayers.
May 21st, 2012 at 4:03 pm
Julie,
So sorry to read about your recent issues. Your story and updates about your TP-AIT we’re very helpful to me when I was preparing for my own TP-AIT (I am about 60 days post surgery).
You are in my thoughts and prayers. Sending you cyber hugs.
Julie
May 29th, 2012 at 1:41 am
Thank you everyone for the kind and supportive words. John – I wish you the best with your upcoming surgery and please know I’ve been keeping you in my thoughts and prayers too. You will be in great hands and you are going to do great. Julie G. 60 days post! Congrats. How has it been going so far? It’s good to see you on here posting
Please keep us posted on your progress. Many thoughts to you. Big hugs to you all.
Thanks!
Julie B.