Hey all,
I went to the Neurologist (a new Neuro and an absolutely great one. One that was compassionate and caring and dern it....listened) yesterday and this is what I was told, that I did NOT know. It is not about how many lesions they see on MRI. It is about the amount of brain atrophy. She said that long before lesions appear, the medical community feels that the axions (axons) in the brain are transversed. Cut in half. Myelin damage long before any lesions are detectable on MRI.
She said this is when the damage from MS starts to occur. She said that what they worry about is the skrinking of the brain tissue. (atrophy) She said this is why it is so vitally important to get one on of the injectable or IV medications very early on, in the disease process.
I am going to do some research on this today and will post what I find out, for those who would like to know.
She was very upset that I have now been so many years without any treatment for the MS, but only for the symptoms. I discussed with her the people on this forum who absolutely feel that they have MS, some have lesions, some don't...she was appalled. She said that if a person already has lesions and they have had all other testing to rule out other disorders, that the patient should push to find another doctor, who will treat them and SOON; if the one they presently have, will not diagnose them with something. She said that the criteria for MS is clear. If a patient meets that criteria, then they should be on preventive therapy as soon as possible. Waiting, is allowing any brain atrophy to progress. She said that this is irreversible.
She said that it can progress to the point where one day, you may wake up blind in one eye or unable to walk without assistance. Just to name a couple of things. It's not worth the risk.
She also told me that person that presents with spinal lesions and very little "sensory symptoms" do not have a good prognosis for the future. Spinal lesions tend to affect the body in debilitating ways. If you present with mostly sensory symptoms and remain that way, this bodes for a more positive outlook for the long term. She said that damage is being done to our myelin whether we are in an attack or not. The axons or axions in the brain are being damaged. As I said, I have to do some more research.
I was crying so hard during my appointment, that I didn't hear everything and take in everything. It's only because I took the love of my life with me, that I remember anything about the appointment.
As some of you may remember, I had a Neuro that took away my MS diagnosis for almost 3 years. That man prevented me from getting the vital treatment for MS that I should have been on. Now the Neuro's from the Medical Center where I went for 8 years, allowed me to be without treatment for 5 of those 8 years. Knowing of the damage that was being done in my brain, for everyday that I was not treated.
I guess the whole point of my post, is not for sympathy, but to stress with every breath left in my body, to FIGHT for answers, if you are not getting them. Fight with everything that is within you, so that if you DO have MS, that you are treated appropriately and NOW...before any further damage occurs in your brain. Once our brains start to atrophy, this is brain tissue that is gone forever.
Heather