Chronic Fatigue Syndrome?/Lymes Disease?/Orthostatic Hypotension! MS!!!!!!!!!!!!!!!!!!!!!!!!

Barbara as told to Richard Reiches

About six years ago, I was working full time in a local non profit agency, supervising 40 nursing assistants and scheduling cases as a home care coordinator. I had been doing it for ten years and loved my job. Suddenly, I found that my organizational skills were gone. I was making the kind of mistakes that weren’t typical of me, such as double booking clients.

At home and work I found that I was having difficulty swallowing, whether eating or drinking, and I would choke on anything. Horrible choking!! It got so bad that I couldn’t breathe. It got so bad that I was even choking on my own saliva. I went to a doctor and he sent me to a specialist. A part of my throat was found to be paralyzed. He couldn’t find a reason for it. I was sent to a speech therapist, and learned how to swallow and eat a certain way. I learned to drink through a straw and take huge gulps at a time. I couldn’t drink directly from a glass. I had to take a huge wad of food to chew. The weight of it made it go down. It was normal sips and normal bites that lead me to choke.

To this day I use a straw for anything cold. Hot, I don’t seem to have a problem. They never gave this a name, and I just forgot about it. I got used to drinking with a straw and eating like a hog.

At work, I just couldn’t seem to do an eight hour day. I had been the one who was always on call for 24 hours at a time, but I was exhausted all the time. I can’t even explain what the exhaustion felt like. It didn’t feel like the normal kind of exhaustion. I just couldn’t function.

I was sent to the doctors for tests. I took the tilt table test. They lay you down on a table. They tilt you back and then stand you up. They took your blood pressure all the time and ask you how you’re feeling. They gave you a shot of epinephrine which should make your blood pressure go up, and then they did the table thing again. I passed out cold. So that told them that I had neurally mediated hypotension along with chronic fatigue immune dysfunction.

I had been trying to work up to now. I needed to work and I wanted to work, but I couldn’t make it through the day. Finally, my company asked me to go on disability, and they offered me a policy. So that’s what I had to do, go on long term disability. In order to go on disability, you have to prove that you’re sick to the insurance companies. That’s an ordeal. I felt like they thought I was trying to fake it. They finally took the word of Hopkins (Johns Hopkins Medical Institution). Hopkins had the final say.

At the time, they ruled out MS and other things that I could have, by the blood tests.

I would go from doctor to doctor. It seemed that when the doctors couldn’t fix me, their attitudes would change. They got sick of me. I could feel it.

Then I went to another doctor who put me on a special diet based on your blood type. Then he took a blood test and diagnosed me as having Lymes Disease. He put me on a regimen of antibiotics, and told me that this would give me my life back.

Meanwhile, my blood pressure kept getting lower and lower. The doctor that I had been going to couldn’t do anything more, so I went to another one. He said that I didn’t have Lymes Disease, but he did pick up the orthostatic hypotension. Sitting, my blood pressure would be one thing and standing it would just drop. Just standing up. I would be so dizzy. I had terrible dizziness all the time. I think I was taking three or four blood pressure medications, but my blood pressure was getting worse. I was walking with a walking stick, because I couldn’t walk a straight line.

Orthostatic and neurally mediated hypotension are really the same. These diagnoses have stuck. Lymes Disease and Chronic Fatigue Immune Syndrome have not.

My hand was also getting numb. The doctor told me I had a pinched nerve. One day, I was pouring myself a drink. I tried to pour the drink but the fluid would end up on the floor. The same thing happened again. I looked at myself in the mirror and found that my left eyeball was all the way over on the left side of the socket. I was having double vision.

I went to an eye doctor that day, and he sent me to a neuro opthamologist. I walked in and he took one look at me and told me that I had MS. I couldn’t believe it, but I went to a neurologist who did some tests, and he confirmed it. I was told that I probably had Multiple Sclerosis for the past six years.

They told me that they have made great strides in the treatment of the disease. I give myself an injection every day. They have medications A, B, and C. I am taking C. They told me that the eye would correct itself and it has. All I do when the eye goes over to the left, I just patch one of the eyes. It doesn’t matter which. It corrects itself after awhile. If I am watching t.v. or reading for awhile, my eyes will blur. So my vision problem hasn’t completely resolved, but it has gotten much better. The blurriness comes and goes.

I am being MS educated right now. I am walking around the house with the proper equipment, the right kind of cane. I go for longer distances with a walker. I learned that it is as if I had a stroke on my left side, which is much weaker than my right side. I have no reflex reaction in either leg. I don’t want to know what this means.

The fatigue is constant both psychologically and physically. Fatigue is constant with MS. It is as if someone made a hole in your body and sucked out everything within you. It makes it easier to understand why I was earlier diagnosed with Chronic Fatigue Syndrome.

My blood pressure is now low normal. That’s since I have been taking these shots, although there is no record that these shots have any effect on blood pressure. My neurologist told me that these may be just my symptoms of MS. Everyone has different symptoms. With MS you never know.

I have no complaints against any of the doctors that I saw. MS mimics many other conditions. They did the best that they could. It takes years sometimes before you develop definitive symptoms, which finally happened with the eye going over to one side. With the diagnosis of MS, I became excited to finally have this determined. Now, I’m learning to live with it. The MS Society is a lot of help. The information and the peer counseling are really great. That’s where things stand now.