Living with MS Part 2

Last year I wrote about “Living with Multiple Sclerosis” and I left off needing to go in for more tests. Well, these last 12 months have been an emotional and physical roller coaster for me. Going into my annual appointment with my Neurologist, I was feeling great.   She said “you’re too healthy,” normally I would take that as a compliment, but she wanted me to retake all the MS tests to see if maybe I had been misdiagnosed. I’m thinking great –I don’t have MS; this was all a bad dream. I’ll be able to get off my meds and everything will be fine.

There are 2 main tests for MS: the MRI of the brain to look for lesions (they look like pieces of white rice on the images), and a Lumbar Puncture. The MRIs are loud and uncomfortable where you’re shoved into a tube-like machine and you have to lay there still for 20-40 minutes. Mine was 40 minutes as halfway through they injected contrast before they finish with the mapping. I would much rather do a million of these before I get another Lumbar Puncture (LP)! The procedure is similar to an epidural, except with an epidural they are blocking pain and with the LP they are extracting spinal fluid. The first LP was painful, but manageable. Unfortunately, the hospital ran the WRONG tests and did not keep any specimen in the freezer to run the correct tests! Really?!? If they made that mistake with blood, that’s one thing…but spinal cord fluid –UGH! I had the repeat the whole process except this time they had to poke me twice. And upon doing so there were complications to the healing. You’re supposed to lay flat for several hours after the procedure so the hole(s) heal up and so no spinal fluid escapes. The doctors released me way too early and immediately I experienced a debilitating migraine. I’ve never experienced anything like this. I couldn’t sit up, stand up, walk – nothing. After calling the doctors they said just to rest and everything would heal. After 2 days of not healing I had to return to the hospital and receive migraine pain treatment as well as a blood patch which required them going back into where the LP had been performed. Almost immediately I felt better…sore…but no more migraine.

Spinal Fluid

After revisiting these MS tests I was positive that I was going to have a negative diagnosis and I’d be able to stop my daily injections…Unfortunately that was not the case. No matter how healthy one looks externally, you never know what’s going on internally. My neurologist informed me that the injections were no longer strong enough and the disease has moved into my spine and that we will be changing my medications to a pill instead of the injections. To be honest, I liked hearing that I was changing to the pills, but what I was not prepared for was having to deal with the insurance company. “You need this blood test, or vaccination, then eye test, that medication is not formulary so you’ll need a different prescription…then a different blood test…” It was never ending and took 3 months before I had the medication in my hands.

March is when we were changing my medications. My original medication prescription was due for renewal but due to the new prescription coming in there were complications and was led to believe I couldn’t renew one prescription while attempting to receive a new one. So within those 3 months I was not on any MS medication and after the 2^nd month, I began exhibiting signs of a flare that would last for 12 weeks. But that is a different story…

Thanks for listening…more to follow…

For more information on the disease or to contribute to finding a cure, please visit http://www.nationalmssociety.org.