by Brenda Perales
Two years ago I was “officially” diognoised with MMN (Multifocal Motor Nueropathy)and with everything I went through getting there I feel strongly that I was one of the lucky ones! A little over three years ago I finally went to my regular doctor because I was tripping all the time. I had horrible leg cramps. I felt like there was a party going on in my legs with all muscle twitching. I had weakness in my left ankle and toes and I was limping. I just figured I had a problem with my back, or that is how I justified it in my head. My symptoms, looking back, probably started slowly about 2 years before that.
After my appointment with my regular doctor she sent me for an MRI on my back and submitted some blood work. When all of that came back normal she suggested I go a see a Nuerologist, say what? Okay, so off I went and after an initial appointment he scheduled me for a nerve conduction test (worst test ever!) At this point I still was scratching my head, but starting to get really nervous. At my follow up appointment he was pretty sure it was one of three things, CIDP, another I can’t remember and he wanted to rule out ALS! He said I did not fit in any box neatly, was kind of stumped and wanted me to go to John Hopkins and see Dr. Cornblath. Remember MMN effects 0.6 in 100,000 people, is 2-3 times more likely to affect men and it normally starts in the upper body, besides being female all my symptoms were in my legs.
This is where my luck started, because let’s face it I had only been to two doctors so far and was getting referred to one best research hospitals in the world. When I went to my first appointment with Dr. Cornblath we spent about 3 hours with him. Another nerve condition test, blood work, eval and breathing test. At the end of all this while I was still laying in the bed he took my hand and said everything was pointing to MN/ALS and I remember bursting into tears. He said they were going to fast track me and work with my local Nuero to get all my testing done. So from there I had two MRI’s with contrast on my back, more blood work, urine test, spinal tap, CT and a genetic test. I was going back and forth between JH and home. Dr. Cornblath asked if I wanted try IVIg, at this point being terrified that I was not going to be around to see my son’s graduation, get married, see grandkids I would have tried anything to rule out ALS! What I did not know at the time was this was my chance to rule out ALS. So everything was set for a 5 day loading dose and two more two two day treatments before I saw him again. I started to notice a difference, but was it in my head? I don’t know how I kept it together but I did. Now remember Dr. Cornblath is an expert in MN/ALS, CIDP and MMN and even he was surprised, I mean really surprised that I was responding to treatment. So because I responded I was now diognoised with MMN, it would take me a long time to trust I was out from under the ALS cloud.
Now you are probably wondering why do I think I was one of the lucky ones. Most MMN’ers see about 4-5 specialist before they get diagnosed, and I only saw one! There are only a handful of Neurologist that really understand MMN and I was sent to one of them! Most MMN’ers are misdiagnosed with ALS for years, I was only under that terrifying cloud for 4 months. There was a treatment that would hold MMN at bay, I was in that lucky 5% for FDA approved treatment options. I was one of the 80% that IVIG worked for. My Nuerologist knew how to request my one and only treatment option from my insurance company, a lot of MMN’ers have to fight to get it.
I had an amazing in home nurse that did my infusions and I had heard horror stories about others who had in home nurses. I had an amazing support system in my family and friends, I know people that have to go through all this alone. I had insurance that would cover the horribly exspesive treatment, some MMN’ers had to try a “Go Fund Me” page to try and pay for it or not get treatment at all! I was able to switch to SubQ for my treatments last year and get my independence back to an extent and it does not work for everyone. The IVIg gave me horrible side effects and I was always on a roller coaster with strength. Now on the SubQ, I am level out, minimal side effects and I can do it when it is convenient for me. I am at about 90% of my former strength! But as far as MMN goes I am not using a brace, walker or wheel chair, I have no muscle waisting and my new normal feels pretty normal. I will never be cured and it will progress but we take one day at a time.
So you see I am one of the lucky ones! I have bad days, but now two years later, I have more good days, but everyday I wake up thankful!