Born with MS?
I can never remember a time I wasn’t in pain. As a young girl my father always told me it was growing pains. I would wake up screaming with leg cramps in the middle of the night and I was told it was a vitamin deficiency. There was always a reason behind my problems. I had become so use to being told there was nothing wrong that I quit complaining.
I got married and when I got pregnant I felt wonderful. I found that each time I got pregnant I felt wonderful. I thought it was just the fact I was carrying a life inside me, but the pains went away and I actually seemed to glow. I had four children and six miscarriages. I was told I had a tilted uterus. I found as time went by I was in more and more pain and I had lost most of my energy. My husband started telling me I was thinking too much about what needed to be done and therefore tiring myself out. He said I should just get up and do it.
After my son was born I had my tubes tied and when my son passed away I had a reversal done and had two more girls. With my youngest daughter I felt something was wrong and my Dr. took me seriously and induced labor ten days early. Shortly after she was born I started getting bad heart palpitations so I was sent to a cardiologist who informed me that my next pregnancy could kill me. I had been in so much pain I went to my regular doctor and he ran every test he could think of and said he couldn’t find anything wrong. I, scared, went to a psychiatrist and told him, I am in so much pain all the time but my doctor says there is nothing wrong with me so I must be crazy. He gave me an anti-depressant which seemed to help.
I got pregnant again but miscarried out the wrong end of my tube and it lodged behind my uterus so I had to have emergency surgery and after that I had a hysterectomy. I quit taking the anti-depressants just before my surgery as I was scared of having medications in my system while they were putting me to sleep.
While I was recuperating from surgery, at home I sat and played video games with my oldest daughter. That night, after going to bed I woke up with my legs tingling. I walked around a bit trying to walk it out but to no avail so I sat in my dads recliner and fell asleep. When I woke up I could not walk at all. My father and husband had to carry me to the car and took me to the hospital. By the time we reached the hospital my arms had also gone numb. The neurologist did an MRI along with other tests. The nurses all told me I had MS, which at that time I had no idea what that was but then the neurologist said no, it was depression. Now anyone who knows me, including my regular doctor knows I am not a depressed person but he wouldn’t listen and actually got angry when I asked about MS and asked about the spot on my MRI. He claimed the spot was caused by migraines that he had earlier said I didn’t really have. I had even seen an ENT doctor who said I had the hearing loss associated with MS.
My family doctor knew I did not have a depression problem at this point so he sent me to the Muscular Dystrophy clinic. He said I definitely had an autoimmune disorder and if it was MD it could be treated but MS could not, at that time. When I arrived at the MD clinic it just so happened that it was the same neurologist and he started screaming at me the minute we walked into his office so we left. We drove to phoenix to the MS clinic there and they ran nerve conduction tests and MRI’s and after all their testing the Doctor informed us that there was definitely something wrong and I had nerve damage on my right side. But after making a phone call to the other neurologist he came back and said there was nothing wrong which even confused my husband so we got every pamphlet we could on the subject and read up on it. I realized and my husband realized that I, indeed had MS. I decided it wasn’t worth seeing anymore doctors as they couldn’t do anything about it, so why bother. I, at least found comfort knowing I wasn’t crazy and there was a cause for my pain.
I had lived with it my whole life and had, kind of gotten use to it. I have never known quiet as I have always had a ringing or buzzing in my ears and I have had double vision by entire life…it’s like seeing a double exposure picture. I just kept getting worse and worse as far as the lack of energy and the pain but I learned to live with it until we moved to Kansas and we established with a new family doctor who wasn’t going to take my “oh well” attitude. He sent me to a neurologist but I was certain of the outcome so I, myself went to the Psychiatric clinic and asked them to run all the test necessary to find out if I had a depression problem. They did and the results were in my favor. The psychiatrist said I was the least depressed person he had ever met so when the neurologist started to say depression, I hit him with the psychiatrist card and walked out. My doctor sent me to another neurologist who actually was a real doctor. He ran tests I didn’t even know existed. He ran so many tests I was feeling like a lab rat but in a few days he called me and informed me he wanted to send me to a specialist because I had Monoclonalgamopathy or MGUS….then after seeing him for several years he did another MRI and a comparison of my prior ones. He informed me he had to diagnose MS…I knew for years what the doctors didn’t want to admit. He asked me if I wanted to start treatment, as the newest treatment was out, but it cost in the thousands of dollars and I didn’t have that kind of money so I passed.
That neurologist left Kansas and so did I. I have never found another neurologist who cared like he did, in fact the last neuro said he really didn’t think it was MS because I was doing too good for having it so long….little did he know it was a lot longer that when it was diagnosed, and yet he put in my records that I do indeed have MS. I still can’t say it too much in front of my family because they still don’t get it. I have always been the strong one in the family and because I don’t whine and cry about my problems they think I am just fine. Little do they know that it is getting so bad I don’t want to go anywhere because it hurts so bad to walk and they make me feel like I am just being lazy when I want a wheelchair.
I love going to the beach because the salt water and the buoyancy makes me feel wonderful. I can stay all day in the water and walk or float but when I get out it is so painful. I wont go to doctors anymore because they can’t make up their minds what to do or what not to do and all they do is give me pain pills which don’t work and pills for everything but the MS, like high blood pressure (I wouldn’t have if it werent’ for the pain), high cholesterol, etc. I just wish they would give me something that would work, that would give me a good nights sleep and an occasional day without pain.