Ups and Downs of Home

Hello!

First off I would like to thank you for your response to my ongoing harrowing and painful dilemma with my legs.  Nothing has changed.  I’m still struggling with what to do next.  I am waiting for my ID card for medicinal marijuana and I’m curious and anxious to see if that will help any.

My neurologist ordered it for all the spasticity I am having but who knows.  It may also help with this pain as well.

I think I’m going to schedule an appointment with a neuro surgeon to see what they have to say.  I do have an appointment with another pain management facility but I just don’t expect much from them based on my experience with the last facility.  Since my internist wants me to try them, I will.  My husband and I believe that we need to get to the root of the problem and get it handled since it seems that this is not going to go away on it’s own.

I’m tired of talking about it.  I will keep you informed about the medical marijuana experience and anything else new to do with all of this.

How are you all feeling?  I’m tired.  I don’t get enough sleep and when I do sleep, it’s always an intermittent type of sleep–one hour asleep, two hours awake.  I have huge dark circles beneath my eyes.

I’ve been thinking about moving.  Not now due to all the medical issues I am having but perhaps this fall or winter.  Not sure yet.

I have a large 2-story house.  The problem I am having is with all the levels on the first floor.  You have to go up two steps into one room, then down two steps to leave it.  This is all over my first floor.  There is the kitchen, my office, and the small family room that is all one level.  A half bath is also available.  Oh I forgot.  We added on a bedroom to the first floor as well with a full bathroom.  However, I hang out in 3 rooms.  The kitchen, office and family room.  I can’t even go in the backyard without struggling to get down some steps, so I don’t go out often.

I need a rancher.  We don’t want an apartment or condo.  We have too much stuff and we both hate living with neighbors everywhere.

This is about all I can handle for today so I’m going to cut it short and sweet.  I will write again soon when I have more energy.  Right now I’m slumped in my chair and leaning way over to the right.  It’s uncomfortable.

Hugs to you all.

 

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A PAIN IN THE WHAT!?

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.

Can I Run Away From Myself?


Well folks.  I’m here to tell you that right now I’m beside myself handling all this pain I’ve been experiencing.

It all started almost three months ago.  I began to feel a strange tingling in my legs, stronger on the left side.  It was strange because it just went from my knees to my ankles.  It came and went.

Then the intermittent periods between it’s coming and going shortened and I started experiencing pain.  It was the sensation of a charley horse.  You know how you know that it’s coming?  You start to feel a pain that builds and builds then it gets to the peak and goes over into excruciating pain.

What happened to me is that it went over into excruciating pain and it never went away.  It’s horrible.  Add to that the tingling sensation!  It decided to join the pain party and get stronger.  It also decided to stay at the party like an uninvited guest who doesn’t know it’s time to go home.

Have you ever used a tens unit?  Well if you turn the tens unit too high you get awful pain from it because it’s like an electrical sensation that’s too high.

This is what I’ve been living with for two months now.  I’ve been to the hospital twice trying to get help for the pain.  They helped me over night by giving me morphine and they ran all sorts of tests.  They felt it was coming from my back.  There was no definitive reason why they thought that, but that is what they said.  During the one stay at the hospital, their solution was to give me a heating pad to put on my back.  This was the instructions the hospital neurologist gave.

It was a very odd visit with him.  He could barely hear and no matter what I said he insisted that I had back pain.  I kept insisting that I didn’t.  My general practitioner also felt that way.  She felt it was sciatica.

There is no point repeating myself relentlessly because I know my last blog mentioned a lot of this.

Here is where I’m at now. MRIs were taken of my lumbar spine and my cervical spine.  My lumbar spine showed a bunch of stuff, but the radiology report was not definitive that about anything impinging my spinal cord.

My neck, however, showed that in three different areas, my spinal cord was impinged.  It was decided that I see a pain management Doctor for my legs and surgery for my neck.

I went to see the pain management Doctor.  I was given Tramadol for pain which is dispensed one week at a time and that they would like to try an injection in my back, under anesthesia, to block the over active nerves from sending pain signals to my legs.  This will be done on the 15th of January.  I figured, what the heck.  I will try anything to get rid of this pain.

Then I saw the neurosurgeon about my neck.  He told me, they will go in through the front of my neck, push everything to one side, in order to reach the cervical spine.  They will then remove three discs and replace the whole thing with a rod. But wait…there is more!

I finally saw my MS Neurologist.  I bombarded him with everything that had occurred since we last met.  I did wonder if the pain in my legs was from MS or something in my back.  Since the consensus from so many doctors was that my back was the root of the problems, I went along with the crowd.  However, my neurologist asked me to explain the pain from onset to where it was that day.  I did.  He looked at me and he said, “What you’ve explained to me is a classic case of neuropathy.”

                “What do you mean?”  I asked.

                “No kidding.  You explained to me precisely what happens with neuropathic pain.  The fact that it doesn’t seem to be connected to pain in your buttocks or your back and that it seems to be concentrated in just your lower limbs.”

                “Oh no!  What should I do about the nerve block procedure?”  He thought about it for a second and said.

                “Well just in case I’m wrong, I would go ahead with the nerve block.  I doubt that it will help, but if it does, then great!  However, I think we will try and treat this with medication as well.”

I thought about everything he just told me.  On the one hand, I was pissed off at all the doctors who treated me at the hospital with heating pads and morphine.  Why in the world didn’t they think about neuropathy and help me with medications.

I was also pissed off at me.  Why didn’t I call my Neurologist when all this started?  I thought about it, but I didn’t act on it.  Instead I waited hoping it would just pass like so many other things come and go in MS.

He did agree with the Doctors about my neck because he too had received a copy of the radiology report.

My Take on this:

Relief from pain.  I don’t care what it takes.  I’ve lived in 24/7 pain for nearly three months and my heart goes out to people who live in this kind of pain for so much longer.  I can see why some have suicidal thoughts with this kind of pain day in and day out.

I wanted to run away from myself.  I wanted to shed my body and just turn around and kick the old thing.  I wanted to run as far as I could from it. 

I usually look at my life five minutes at a time, but right now I have things looming in front of me that is difficult to ignore.

The shot should be nothing…I hope.  But the cervical spine surgery is not something to slough off as nothing.  I don’t know how much more my body can continue to take at this point.

Let’s forget about all that I just wrote.  There are a lot of positives that can loom ahead in the future as well.  I should not be ignoring that. 

Take one step in front of the other and …  and…

Does anyone know how to run away from myself?