Hi @johnbishop , thank you for both the welcome and information. The answer to your question is I don't know I would like to explain my answer and in doing so give a little history and maybe look for some insight or advice or just talk so I don't feel alone or stupidity like a couple so called a Top MS doctor . I didn't realize neurologist treat many conditions but specialize in particular one. In 2015 I was experiencing very unusual changes to my thought process to my muscle control to the way I had to think before my words could come out I had to connect the thought to the words. My speech was slurred my balance was off. My primary care physician suggested I call the hospital my doctors were with for appointment with neurologist. October 2015 I met with neurologist who had a great reputation. I had so much other medical problems osteoarthritis throughout my body from feet , knees, spine and neck, thyroid disease fibromyalgia you get it I underwent months of test she diagnosed me with MS. Still continued to run more tests one being a spinal tap. Because of 3 oncological bands found in my serum along with other medical terms it was Ms and Gillian barre syndrome at that point she told me I need it IVIG infusion treatments okay 6 months twice a week for 5 hours a day. In 3 months she never wants talk to me about my multiple sclerosis. A nurse ran the infusion treatment center. After a couple months I finally connected with the doctor her response was continue taking the injections for Ms unless something happens we will meet when infusion treatment is completed in October 2016
Times nurse couldn't find a vein my blood pressure was low the nurse suggested to Dr. To pause IVIG for a few weeks Dr insisted I was fine . One day after treatment I was extremely tired not like the Norm
Almost 7 days I stayed in bed .time for hospital chest is hurting now . 7/2016 in hospital for 6 days pneumonia, internal bleeding, ulcer I became anemic. I'm sorry this became a book . I finished treatments my PCP called her from my bedside letting her know my situation and take a pause. She ordered a MRI of brain and said I must finish
I did she said I needed more however when she was told insurance company only paid 6 mos. She didn't order another test to see if IVIG worked toe to schedule appointment with assistant. The next neurologist did great exam mental and physical sent me for more MRI
And said he doesn't know about Gillian barre but Ms yes but he specialized in strokes so he sent me to The MS doctor the best . More mri's of brain and cervical spine. No exam. No asking symptoms nothing test came back he responded by telling me I need to see neurosurgeon. My neck has changed since last MRI
What the one 4 months prior he brushed me off as yes you have an abnormal brain scan and lesions etc and one at base of skull oh and by the way you have arterial sclerosis and I asked him what's that and what does he do for treatment he said he does nothing my primary doctor should have seen that okay.
I spent 4 years on a treadmill one doctor to another . My back became cripplingly I did have 2 spinal operation. I just stopped unless your brain lighting up like a Christmas tree Ms is still I think not understood. Not one doctor looked or brought up my spinal tap. Report that said Ms etc but other test to make sure it's not lupus or other disease.
This is a whole nother area lol but a was a teen mom and married and beat from 16 to 19
I said it aloud
so where or who do I go to who will treat me and my health with some real involvement, I dont know the words im looking
I'm sure you understand. Thanks for allowing me to the opportunity to put this down