As promised, I will continue the story of the pain in my legs.
After a month of recovery, I took off my neck brace permanently. My husband and I both noticed that my neck did not flop over to the right. It was straighter although not completely straight. I could not and to this day, still cannot bend my neck backwards like looking at a shooting star directly overhead. My neck still hurts a lot.
I made an appointment with a pain management Doctor. When I got there, I was seen by his PA (physician’s assistant). She listened to my story and I told her it was going on four months since all of this initially started.
The upper most question for her as well as to other doctors whom I’d visited was this, is this Multiple Sclerosis or a back issue? I can’t even tell you nor does my neurologist know for sure. Ultimately for me, my question is, who is going to help me fix this?
It was decided that I should get a steroid shot in my lower back. It was scheduled, I went, and the result was nothing. It was then decided that I should have an EMG (electormyelogram) test. The result was that I had pinched nerves in L5-S1 on both sides. L5-S1 is the location of the bone in the lower back. They number from 1 through 5. S1 is the next bone underneath L5. The nerves being pinched were between L5-S1. Don’t quote me on this explanation because I’m not sure that this is precisely correct, but you get the gist of it.
Armed with this information she scheduled another shot for me. This is all done under light anesthesia. You go home in a few hours. It was scheduled, I went, and the result was a few hours of relief and then the pain returned full blast.
When I returned to see her with tears in my eyes, she was excited to hear my news. She said that it was good and bad. It was bad because she was sorry that the pain returned. She was glad because having had a few hours of relief, she was sure that she had solved the problem. It was the pinched nerves in L5-S1. Her conclusion was that I needed another injection in the same location to see if the same result occurred or even better. Perhaps the second shot would take, and I could get by without another shot for months.
I then asked her what would happen if the same thing happened where I had relief for only a few hours. She then replied that I would probably need surgery. When I asked her what type of surgery, she told me that they would go in and scrape the bones back away from the nerves. I never heard of that procedure before. It didn’t make me very happy. She then scheduled my third shot.
You must realize that all of this took months to happen. By this time, I was going on 6 to 7 months of unrelenting pain.
I had no idea what a pain management doctor did before this. I knew one thing. I needed help for this pain in between their poking around with their shots. Because of the changes in New Jersey law restricting the use of narcotic drugs that could be prescribed, I would be given about seven days’ worth of a codeine medication. This medication only eased the pain for about an hour or so and I had to wait six to eight hours before I could take another pill.
The days and nights I spent crying are too numerous to count. I felt I looked like a zombie with dark circles under my eyes from so many sleepless nights. I could not get into any position that was comfortable for me whether I was in bed, sitting, or standing. I couldn’t even stand the seat of a chair touching the backs of my thighs.
Meanwhile, my general internist was someone I needed to send out to pasture. I was unhappy with her for various reasons including the fiasco at the hospital where she decided that my medications needed to be changed around, not understanding the balance of the two year’s of work it took with my neurologist to relieve me of some of my symptoms from MS.
I had decisions to make now.
When I came out of this office visit with a date to have my third shot and a new script for that week’s drugs, I told my husband everything that was said.
He then told me that while he was in the waiting room, he and another guy who was a patient, struck up a conversation. This man told him about seeing this doctor for two years with no pain relief in sight. His pain was strikingly similar to mine but for some reason, surgery was never discussed for him. My husband was too polite to ask this man why he continued to see this doctor.
Without my knowing about this, my husband had been checking out pain management doctors on the web and found out that these procedures were not FDA approved. Somehow, they were still allowed to happen. I don’t get any of this because I’m too tired to figure out what this is all about although I seem to recall something like that, also on the internet.
My husband told me that he wanted me to cancel the surgical procedure (the shot). I burst into tears and asked him then what am I supposed to do? We sat in the car trying to think straight. Should I consult with a neuro surgeon? Should I take the path of the shot? If I get rid of my internal med doctor, who should I see? Should I go back and talk to my neurologist?
When I got home it was clear to me that I needed to take things one step at a time. First of all, change my internal medicine doctor. I decided to go back to my previous doctor. Why did I change from him to her? Dumb mistake on my part. It was because while I was at the hospital on one occasion, she was my primary doctor on the ward. My regular internist did not practice at this hospital. Don’t get me wrong, the impression that I got from her still stands today. She is a sweet and caring doctor. She was so solicitous that I wanted to be under her care. I exchanged an excellent doctor who saw the whole picture to a doctor whose personality I liked. Once again, dumb mistake. I took care of that right away and scheduled to see my previous doctor.
I’m so sorry that this is so long winded but if I don’t get this finished in one sitting, I’m afraid It won’t get done.
When I visited my doctor, we picked up as though I had not been away for over a year. When he asked me how things were, I told him the entire story. I could see he was agitated but he waited for me to finish.
He looked at me and told me, “You get away from those doctors as fast as you can. What they did was unconscionable.” He was red in the face as I looked at him with a question on my face. He knew I wanted to know what he meant by, “what they did”.
He said that to go in the first time and give me a shot somewhere in the vicinity where they thought my pain was coming from without their own imaging studies such as a CAT scan, was unconscionable. He then said that to give me a second shot with still no studies done on me was also wrong. Then he said to give me a shot the third time to prove to themselves that it was in the right area was “bleep”.
He was very upset and once again I was a puddle of tears. He then said that I was probably being used for billable hours. He asked if I ever met this doctor. I told him only once, on the surgical floor of their unit. In three almost four months, I never had a visit with him in the office, it was always the PA . He asked where I had these procedures done. I told him it was in the same office building on a different floor. He laughed and nodded at that.
He increased my gabapentin to 2400 mg which is the max amount, to see if that would help. I called him in a few days and told him I was in agony. He then added tramadol and Cymbalta which is an antidepressant but also works on chronic pain. Between all these drugs my pain has gone from about a 10+ to an 8+. It often rises as the day wears on and I then add Tylenol Extra Strength to the mix.
Ultimately, I’m a miserable and sad girl going on nine months of this.
My neurologist brought up medicinal marijuana and I’m signed up for that although I haven’t received my card yet. He thought I could use it anyway prior to all this leg stuff going on so it’s an opportune time to try it.
My Take on This
It’s funny how people seem to know that something is wrong with you, outside of the obvious MS thing. Strangers will come up to me and ask me if I’m okay or if I need any help. There must be something that I show on my face that I’m unaware of.
Most of the time, I feel that I give a good outward appearance of being pain free from the general population. Those who are close to me, know. They can tell.
My dearest friend made a comment about not knowing how I do it. How I am able to make others around me happy while I am under this boulder sitting on top of me. I said to her, “what is the point of making everyone around me feel sorry for me. It’s the last thing I want or need.”
If I’m out, I want to be out and try and get some sort of quality living done. Otherwise, it would probably be best if I stay at home. I don’t want to live in the world of “me”. I don’t want people around me worrying all the time. I can’t imagine living my life in the world of “me” instead of the world at large.
I don’t want to draw people into my world. It’s not a very pleasant place considering everything we all go through with having Multiple Sclerosis. I know you understand this. Instead, I want to educate people. I want them to see that having a disabling disease is not the end of the world. Life goes on, if you want it to.
It’s a choice we all have to make. Do we draw away and become reclusive? Or worst yet, do we embroil everyone around us into our life which is oftentimes miserable? Why? Why would we want to do that?
It’s not my personality. I don’t feel I have angel wings although my friend thinks I do. I don’t want to some day leave this world with people eulogizing me as the woman who suffered so much. I want to be remembered as a decent human being who cared about others.
I throw up in here. On my pages of written words I tell it all good and bad. You witness my life as it truly is.
I will keep you abreast of what other decisions I make regarding my pain. I’m glad this is all said and done.