Not Understanding Why No One Wants to Listen!

I have not been diagnosed with MS, but I was diagnosed with Fibromyalgia 10 1/2 years ago and have managed those symptoms with my PCP all this time. In October of 2015 I went for a routine eye exam with my Dr. and he could not perform the exam due to severe Nystagmus and wanted me to come back on Sat. when I didn’t have to work. He thought that looking at two computer screens every day was causing this. So I got my new glasses and by Jan. 2016 my vision started to deteriorate, I started having hearing loss, worsened tremors in my hands, and new tremors in my head and legs. I also started experiencing lack of coordination, imbalance, falls (5-6) during the year, numbness, tingling, unable to get words out correctly, brain fog, inability to concentrate, IBS changed to constipation, worsening chronic fatigue, headaches, temporal pain, hard to stand from a sitting position, catch myself staring and then don’t remember what I was doing, constant high pitch tone in my ears, shoulder pain, leg pain, neck pain, back pain, feet pain, hip pain, Vitamin D deficiency, and Ebstein Barr Nuclear Antigen that keeps going up.

I was hospitalized in 09/2016 with the worst head pain of my life that came on all of a sudden and was admitted to hospital for 3 days. No explanation for the pain after CT, Cardiac Stress Test, 2 D Echo, and spinal tap (Not tested for MS). Note: I had an aunt that died at age 44 of a brain aneurysm. I am 50. My PCP has been my only advocate and she ordered an MRI of the brain w/o contrast in March 2016 that showed few T2 Hyperintensities, MRI of the neck w/o contrast that only showed disc protrusion at C 5-6. My PCP sent me for MRA w/o contrast for the headaches and there was no reason for headaches, but there was an incidental finding of a 2.2 mm sacular anterior communication artery aneurysm. In Oct 2016 I was diagnosed with a High Grade 3 Ductal Cell Carcinoma of the (R) breast and surgery was 12/22/16. I was hospitalized again before that on 12/01/2016 for acute renal failure due to severe UTI and treatment. One more day and I would have reached full blown kidney failure. I am now scheduled for 7 weeks of radiation therapy soon.

To try and make a long story short, I have seen 2 different Neurologists and a Rheumatologist for which all 3 pretty much just didn’t listen to my cry for help. The second Neurologist at Duke University looked at the MRI disc and basically said that the radiologists shouldn’t even put in the report about the few scattered T2 Hyperintensities, said I didn’t have MS and didn’t address the aneurysm as to whether it needed to be monitored or not. He offered no further testing and pretty much said he felt the symptoms were from my recent breast cancer. Well, the cancer is gone and my symptoms still remain and some are worsening. Two of my oncologists stated that the type of breast cancer I had did not have anything to do with my symptoms. My PCP has done Lymes Disease Titer, Rocky Mounted Spotted fever test, anemia profile for which the Ferritin was high, Liver Panel with one being slightly elevated, and monitoring my vitamin D deficiency.

My PCP refuses to give up and has scheduled appointments at another University Hospital with Immunology and Neurology. I feel like everyone thinks I am crazy, but these symptoms have completely altered my life over the last year and are not letting up.

Has anyone else gone through this that could give me some insight? We have a lot of autoimmune diseases in my family. I just want answers for treatment so things can improve, but the longer I have to wait for some specialist to listen, some of the problems my not be reversible.

Nanny 2017

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (2)

Poll