I got a new neuro doc and had my first appointment with him today. My old neuro retired.
I have been diagnosed by several other doctors (PCP, two neuro docs, and a rhuemy doc) with having MS. I have right sided weakness and host of other medical issues. I have lesions on my spine which were confirmed by five doctors including two at the leading cancer center in my area. My last brain MRI was specific to my temporal lobe. I have focal seizures.
I would get into all the crap I have going on symptom wise. However, I wont. I have found from support groups there are too many people who are fishing for symptoms. I am not going to be one of the platforms for people to symptom fish. I will say I have much more than just right sided weakness. I have a whole piece of paper front and back of symptoms. All of them present them self as being indicative and confirming my diagnosis of MS.
The nurse who triaged me at my appointment was amazing. She was one of those people you know you could talk to with ease. We discussed a couple things we have in common. She said “the doctor will be here in a minute.”
When the doctor came in and started asking me questions. He said “(my PCP)sent you here because you may have a pinched nerve.”
I said “I have had a lower back issue for 4 years, yes. But that is not why I am here.”
I began to tell him about everything. He did a couple reflex tests. Did the hammer on the knee, back of ankles, and then again on the knees. He did the push up, push down, press here, put your leg up, put your arms up, etc. I couldn’t tell you if I failed or passed. I didn’t study.. LOL
Then he asked me something no one has asked me and it threw me for a loop.
“Were you abused a child or ever been in bad relationship?”
I just looked at him and said “what?” I had the look of I have no clue what the crap is going on here.
I said, “yes I was horribly abused as a child and I was in a relationship where I was knocked unconscious, experiencing 14 concussions in less than a year.”
Now let me say this, I am not a spring chicken. My child is in his mid 20s. I was alive when MTv played their first video and I remember it well. I was alive when LiveAid was broadcasted. I was alive when FarmAid was first presented. In High School I jammed out to LLCool J on his first album, NWA on their debut album, and my favorite concert I ever went to in my high school days was Madonna on her Virgin Tour. So now you know I am old.
I do know that childhood trauma can present itself in the person’s adulthood. (See article here) However, to ask that question when these symptoms didn’t start and gradually get worse until about three to four years ago. Before that I was in pretty good health other than two bouts with cancer which were quickly dealt with as soon as they were found out.
Back to my doctor’s visit. He ordered an MRI with contrast on my brain and also on my neck with and without contrast.
I said, “(my PCP) said something about my rotator’s cuff. Is that why my arm and hand swells or why I can’t use my arm?”
He said, “There is nothing wrong with your shoulder. It is all in your head. You just need to use it more and the swelling will all go away.”
The thing is the more I use my arm, the more it swells up and the pain is so horrible it leaves it numb. I get neuropathy in my arm and hands that ends up a burning sensation. The more I use it, the more it gets worse. So there is that.
I said “and my leg giving out?”
He said, “that is all psychosomatic. You just need to exercise.”
I just sat there. I honestly didn’t know what to say. I can’t stand on my own without something to hold on to (and most of the time that doesn’t work because it is not enough stability) for more than a couple minutes. I can’t balance myself and have fallen several times. I was hospitalized in 2018 because I fell in the shower and knocked myself out cold. I went from running 8-10 miles a day to barely being able to walk 200-300 ft. I put pressure on my leg and I feel like it is jelly. However, I do preform yoga and strengthening exercises in my legs and arms at least three to four times a week. I am not going to lose muscle.
He ordered the two tests. I told him I have a rhuemy and ortho appointment coming up. He proceeded to tell me how everything I have is not MS and all the other doctors are wrong. Yes all the doctors I have been seeing over the last few years are wrong ((eye roll)).
I made the appointment and got out to the car… in tears.
Looking at the visit summary they gave me, all it says is “right side Hemiplegia“
No one should ever leave their doctor’s appointment in tears because the doctor was just rude. I have vision that goes blurry and double often and it lasts for in the upwards of a few weeks. I have a tremor in my right arm. I could go on and on but I already know this is lengthy and I have a stalker (legit offline stalker who I have a restraining order on) who will twist this in every way possible.
On a serious note, I am going to get a different neuro because I am not going to deal with a rude doctor. You need to be your own patient advocate and your best one too boot. I know it is not all in my head. I know I am not making it up. Other people have seen the swelling. Other people have seen the effect this has had on me. I will never allow someone to be that rude to me.