Undiagnosed?

So today I had the long awaited Neuro appointment. *Yeaaaaaaaaaa!!!!!!*

I really liked my Neurologist, Dr. Mass. She is very knowledgeable and very informative. She is not a warm and fuzzy doctor, but is not sterile like some doctors I have seen before. You know, the "The facts ma'am, just the facts" kind of doctors. She also has a good sense of humor and seemed to get mine, which to me is kind of crucial. My hematologist does NOT get my humor and frequently misreads my sarcasm as a new and strange symptom.

Dr. Mass and I had a long talk about history, symptoms and problems that I am having. Then she informed me that while I had classic MS symptoms, according to diagnostic standards, I can't be diagnosed with MS officially until I have had another "clinical event", ie: a new round of symptoms, more lesions in my brain, or an end to and then exacerbation of my existing symptoms. In the meantime, I have Clinically Isolated Syndrome or CIS. In other words, all signs point to MS and most people with CIS eventually get diagnosed with MS, I just don't OFFICIALLY have it yet. It's like having a green card. You can be in the US, you just aren't a citizen.

With CIS though, it is prudent to begin treatment on one of the MS drugs. Initially, I had been leaning toward Avonex because it is only injected once a week. Then I started reading about Tysabri, which is a once a month infusion and thought that would be the way to go. When I brought it up to Dr. Mass she responded with, "Absolutely NOT!" before I had even gotten to the reasons why I thought it was a good choice. Her biggest concern? It can kill you. (Minor detail.) She said that we would only consider it if all other treatments failed.

So after much discussion of the pros and cons of the ABCR drugs, we were back at Avonex. Yes the needle is bigger than the rest, but it only comes once a week and is injected only in the thigh. The other ones rotate through the arms, legs, butt and STOMACH. Ugh! That did me in. No stomach injections for me, thank you very much! However, there is good news here.

OHSU is just getting ready to start a clinical trial on combining Avonex with Rilutek, an FDA approved medication used in ALS (Lou Gehrig's Disease) that is thought to slow down nerve cell death and delay progression of ALS and hopefully MS. The study will last 2 years and during that time, all of my treatment drugs, MRI's, neuro appointments and blood work will be covered by the study. That is a gift worth about 50-60k!

Additionally, Dr. Mass prescribed a couple of symptomatic treatment drugs for me. One is designed to help with alertness and cognitive function. The other is supposed to help my neuropathic pain in my arms and legs. Interestingly, the neurologist said the the nerve damage in my legs and feet was worse than the damage to my arms and hands. I find this odd because my arms and hands hurt all the time. Dr. Mass feels that is because the nerves are already past that point in my legs and feet.

Finally, I did have some additional blood work run to rule out vitamin B12 and copper deficiencies, which she says will be surprising if they come back positive, but we need to make sure. Also, we are sending blood to the Mayo Clinic (Woooo, fancy!) to rule out some bizarre neuro disorder called Devic's Disease. It mimics MS, but isn't MS. There is (like MS) no known cure but there are some treatments that can reduce symptoms. I am all for having a vitamin or mineral deficiency! Easier to treat and not a chronic illness. I will have the results back in one-two weeks. If there are no findings from the lab work, then we will proceed with the clinical trial.

Thank you to all of you who have had me in your thoughts and prayers throughout this process. Praise God for the wisdom of the neurologist and the kind and informed treatment that I have received. Continue to pray for guidance for all the clinicians that I come in contact with and that if I do start a treatment plan, it is effective in treating my diagnosis. Whatever that may be.