Why is it so hard to get treated for MS?

I was diagnosed with MS in May of 2010 after years of trying to figure out what was wrong with me. I woke up one morning paralyzed from the waist down, my doctor said I needed back surgery. I was already able to walk again before the back surgery, but I trusted my doctor and went ahead with the surgery. It made no difference at all. I still staggered like a drunk when I walked, at times my hands were so weak I could barely lift a spoon, I would be just walking along and the next thing I knew I was flat on my face.

Finally, my primary care doctor sent me for a MRI of my brain. I finally had a diagnosis, MS. She then spent two years trying to refer me into a neurologist, to no avail. When she retired, my new doctor sent me to a neurologist who, without even looking at my MRI, told me I did not have MS, I had sleep apnea. I don’t have sleep apnea.

I go through periods that last from 2 to 8 weeks where I basically have narcolepsy. I pass out/fall asleep constantly regardless of how much sleep I get. My heart rate slows to between 40-45 beats per minute and I am constantly exhausted. Then, as suddenly as those symptoms appear, they disappear.

My most recent neurologist visit was not much help either. He won’t try any MS medications on me unless I let him do a spinal tap. I refused. Because of my back problems, I have had over 100 needles stuck in my back over the last 18 years. The last one was so excruciating I was trying to get up before the doctor could get the needle out. I cannot tolerate any more needles. Of course, they won’t knock you out to do a spinal tap. I could get “conscious sedation” which is what I had when I tried to get up the last time I had a needle in my back.

I have agreed to do another sleep study to prove, once again, that I do not have sleep apnea. But then what? What is the absolute worst that could happen if my neurologist gave me medication to treat MS and I don’t have it? Would it kill me? My neurologist has said that I do have some symptoms of MS, but the lesions on my brain could be caused from cigarette smoking. The doctor who read my MRI and diagnosed me with MS said that is ridiculous given the depth and severity of my lesions.

I’m just wondering if anyone else has had this much trouble getting treated? I am miserable. I can barely walk, my vision is getting worse every day, I am exhausted all the time and I can’t find anyone who will help me. I will be 48 on May 6th, but I feel 98.

If anyone has any suggestions I would love to hear them.

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