Surprisingly vindicated......

Back in 2013 I was diagnosed with MS by my neurologist. She isn't just any neurologist as she is an MS neurologist. She only sees patients who have MS and no other neurological conditions. Personally I have a lot of respect for her as she was first neurologist to diagnose me with MS after having symptoms for roughly 13 years. I've learned over the last few years that she is no only highly regarded in the San Antonio area, but is well known nationally.

Moving forward to 2014 I had brought attention to her about a treatment called HSCT. She was unimpressed about it at the time and said she could not endorse an unapproved treatment for MS. She still preferred the usual suspects of FDA approved DMD's (disease modifying drugs) and started me on Copaxone. My conversation with her pertaining to HSCT is very clear in my mind. Her first point is that I should wait for the FDA to approve the treatment. Then get it in the US rather than going abroad. I told her that I was denied for the clinical trial in Chicago and it would be many years before FDA would approve the treatment. Time was not necessarily on my side. Secondly she said that she was concerned about the medical treatment I would receive in places like Germany, Russia, and Mexico. Thirdly she was concerned that I would be throwing away money on a hope and a wish. Her point is well taken there because it is a lot of money and we all know there are swindlers around the globe that are more than happy to separate you from your money. They do this with no hope of bettering your health.

My conviction to receive HSCT was not affected by her points to me that day. If anything maybe I was more hardened in my position because I had done my homework on the treatment . In my mind it was still the best option to fight the MonSter. My mind still needed to be put at ease that ablating my immune system was necessary. Thought it through and decided to get a second opinion on the MS diagnosis before going through the HSCT treatment. Another doctor that I was seeing recommended to me that I see a neurologist in the Dallas area that he held in very high regard also. Happily get a very good recommendation from him I set out for a few trips to Dallas. Again I was very impressed with this neurologist and was pleased at how thorough she was with her diagnostics. Unsurprisingly, she too concluded that I have MS and because there was a new lesion in my neck she surmised that the disease is still active. Simply meaning that I am still in the relapse remitting stage and have not progressed to the secondary progressive stage. This is a very important distinction to me because HSCT is thought to be more effective for RRMS patient. It is still effective for many SPMS patients, but a higher percentage of RRMS patients respond positively to HSCT.  With the second diagnosis of MS from two highly regarded neurologists I felt it was a no brainer to travel to Moscow and be treated by one of the, if not THE, best HSCT doctors for autoimmune diseases in the world.

So fast forward to today's time. I saw my primary care doctor a couple of weeks ago. She was recommended to me by the MS neurologist in San Antonio who first diagnosed me with MS. Well, my primary care doctor was quite impressed with the results of my transplant. She thought it would be a good idea for me to go back to my neurologist to speak to her of the nagging spasticity in my legs and body. Those things have not really improved for me and she felt there are some medicines on the market that may help me. Honestly I was a little reluctant to go back to see my neurologist because I basically rebuked her recommendations and went to Russia anyway. There have been many stories on the forums of neurologists not taking kindly of patients taking control of their own health care decisions. Maybe its a God complex or an egocentric situation, but I feared things were not going to be well received by her.

Today I was simply floored be the reaction of the neurologist today. She has gone full circle in her opinion of HSCT. Could not believe it was the same person who was trying her best to talk me out of such heresy as going overseas and paying huge sums of money for unproven treatment. The words out her mouth today sounded exactly like what I was telling her three years ago. Think I was glowing like a newly impregnated woman in the exam room today. Felt totally vindicated in a manner that I just couldn't imagine. She did her level best to make sure I am having my blood drawn and tested regularly. That I am taking the proper precautions from infections. The whole experience today was so relieving and gratifying at the same time. Before leaving I was given a prescription for Ampyra to help with walking and will be getting a higher dose of Tizinadine for the spasticity in my legs and body.

Her comments touched me deeply too. She said I looked great and was very happy that I had HSCT. I really was curious if she had other patients who had HSCT. Guess what, she has and they are doing very well she said. Then very surprisingly, she railed on the pharma companies. Think my eyes almost bugged out of my head. Kind of Marty Feldman like. LOL

Felt like I was on cloud nine today. Its something that was really needed for me at this time. Conviction payed off in a really big way. Stay true to your heart is a good way to thing about it. My health is more important to nobody more than myself. Felt like I was convinced that my best hope for a decent quality of life was with HSCT, regardless of the naysayers. Am so glad that I stood my ground and went against the establishment and prevailed. So glad to have my MS neurologist back on my team.