Hi. I was diagnosed 15 years ago. I had some very bad exhaserbations at the beginning, but more recently I have been somewhat lucky. I say that like I have no problems. Truth is, I have new ones. I was hit with some very sad, stressful news. Our first grandchild, 3 months from her first birthday was diagnosed with Stage 4 Neuroblastoma. She is still fighting, and has a long way to go….but its the most recent thing to send me to the hospital. After the initial shock I tried doing all I could to support my daughter and granddaughter. You think to yourself I can be sick, in bed, hurting…whatever just let me be there for them right now. Well, that became a prayer daily. I was granted such request and like a bombshell I crashed. At first it was “why am I tensing my stomach?” and “why is my tongue doing this wierd stuff”. I dismissed it as being over tired. But it got worse. I made an appointment for my primary care doctor for the following Monday. Im not sure what happened over the next few days but I was home, alone and I guess other than talking to the dogs it was a pretty quiet much needed weekend. Monday morning I get to the doctors office and I sound like Im drunk. Actually, more like I had or was having a stroke. As soon as my doctor of 10 years walked in the room he asked two simple questions, grabed both my hand in his and said Im right here and Im not leaving your side, but the nurse is going to call 911. Of course it sent me into confusion, fear, anxiety. I was swimming in a hundred half thoughts, nothing was coming together, nothing made sense and it just made me more upset. I was of no use to the resque squad as I couldnt answer them or even understand what they were asking. The ER doc kept asking me when these symptoms started…I couldnt tell her. They kept talking about a four hour window and kept pressing me for answers which just made me more upset and confused. I went straight into bloodwork, ekg, and an MRI. Luckily, they did not give me the medication they were trying to figure out of my four hour window. Seems if you are having a stroke that is the time they have to get the meds into you to save you. I was admitted and several doctors worked on me. The MRI showed no stroke so they assumed it was a MS exacerbation. They asked if any stress was in my life….uh, yeah but it was too upseting to discuss at the time. When I could finally get it out they turned white almost. They didnt know what to say. They didnt know how to comfort me. All they could think to do was give me solumedrol via IV for three days. I slowly improved to be able to speak, and have a small conversation. I was in pain yet they couldnt find a physical reason. I was told near the end of my stay that IF I did not want to be back in here for real…with a real stroke I needed to remove some stress from my life.
Do you ever get told that? It’s like we WANT the stress! That isnt how it works folks! And how exactly do you remove it? It is silly concept, and I think its the only thing doctors can say…they sure cant tell you how. They do go down an imaginary list of what to do and not to do. And in a perfect world we would have switches we could just turn off things, like pain…stress…emotions…eating to much or too little…sleeping too long or not long enough. But this isnt a perfect world and daily you are confronted with obstacles to go over, thru, or around. STRESS IS huge when it comes to MS. Its something we all have to deal with in our own way. But there is MS Stress as well.
My MS stress is two fold. One, I have a doctor I have seen since I was diagnosed. He is very clear on his views-that MS ONLY AFFECTS YOU CENTRAL NERVOUS SYSTEM. No other symptoms I have are connected, though there are written about and discussed all the time. He talks fast, mumbles a lot, is very matter of fact, and on a time schedule. His next appointment is January 2019. I find a great deal of stress in that. Supposed to be one of the best in my area, yet he doesnt look past his own reasoning to consider other issues you are having that have been proven people with MS have. Its enough to make you crazy! But what do you do? Find another neurologist? Much easier said than done. The best of the best are in one group and you cannot see other doctors, you have to stay with the one you have unless you want to go head to head with the office manager as to why you need to see someone new and they approve it or say no. What kind of world is this? I cannot tell you all the things my body is doing right now-and he is of no help. Hurt? too bad. Cant give pain meds out. Emotional? Find an outlet…what?! Too stiff? Do yoga, and exercise. Where did the doctors go that cared about their patients? That took the time to listen and strategize a plan to help you live a better life? I CANNOT FIND ONE…is that the norm these days? Talk about stress! Anyone in this boat with me? Have any suggestions?