I have Multiple Sclerosis

It's taken me a while to adjust to this diagnosis. I doubt anyone ever considers how they will react or feel when told they have MS. At first I barely thought about it, bought some books, read them in part, but mostly didn't want to accept the facts.

Reality bit pretty quickly though. My neurologist prescribed a four day course of IV steroids which I was able to do at home. He put me on Clonazepam to help the dizziness which really messes me up and makes life difficult for me some days. I was also started on Copaxone shots, once a day, which is a medication to help modify the way that MS progresses. It stings like crazy, like a bee sting, and I cannot say I love it, in fact I pretty much dislike it really. At first I would put the shot on the table in front of me and just glare at it, probably willing it to go away, but that never happened! I still glare at it on occasion, but now just have to grit my teeth and get on with it!

I was dreading the IV steroids but the actual process was fine, unfortunately I ran into trouble when the dose was stopped after 4 days. I was SO sick. Every bone in my body hurt to the touch, I couldn't even rest my chin on my hand because it was so sore. I could barely walk, wasn't sleeping and ached all over. For 8 days life was miserable and I vowed to never, ever do IV steroids again. But then things began to settle down, I started to feel better, had a little more energy and began to sleep again. Sadly, that phase lasted only about 2 weeks before I began to feel tired again and my joints began to hurt.

I am starting to read my MS books again, it's hard to accept this is never going to go away. I have had some tingling in my fingers and around my face, so while I dislike the Copaxone intensely I am hoping it's working hard in my system to prevent my MS from becoming worse. Only time will tell!

The dreaded lumbar puncture!

Monday 16th was the day of my lumbar puncture, and it's fair to say I was somewhat nervous!

I arrived at the neurologists office for my 8.30am appointment. My back was cleaned with Betadine, then numbing medicine was given via a shot, and that stings so much they should give you a pre-numbing shot!! HAHA! Then a small needle was inserted between the vertebrae and I immediately felt a lot of pressure down my left leg, so I told Dr Adams that and he removed the needle and reinserted it.

It didn't take long to collect the CSF, when the procedure was over he showed me the four vials and I was very surprised to see how clear it was, just like water. So that was it, nothing much to complain about really! I was then told to go home, and lie down for 6 hours and drink a lot of caffeine! Apparently this helps avoid the dreaded Lumbar Puncture headache which is incredibly painful. After lying down in the doctor's office for about 45 minutes, I had to go to another office to have some blood drawn and then Chuck took me home where I spent the rest of the day lying in bed, swigging copious amounts of Coke!

I don't normally drink anything with caffeine in, and I paid for it during the night! Although I was tired I slept poorly! My back was sore and I slept for an hour and had to get up to pee, slept for another hour, had to get up and pee, slept for two hours, asked Chuck to get me some painkillers! It was a long night and I felt terrible the next morning, so Chuck called in sick and stayed home to help out with the boys.

Now I have to sit and wait. The CSF is sent to Minnesota and the results will take about ten days or so to come back. And right now I don't really care if I do have Multiple Sclerosis, I just want to start on the correct medicine for me, and start to feel better and be able to do things again!

And it still is all about me!

I was pretty anxious waiting for my appointment with the neurologist. I saw my rheumatologist and talked to him about my physical therapy appointments and my dizziness. He wouldn't make any comment on my health until the neurologist had seen me, neither will he change any of the many medications I take, until I have seen the neurologist! I wonder if Dr. Adams has any idea how many people are waiting for his professional verdict on my symptoms!

So, the big day arrived and I think it's fair to say I was nervous. Unfortunately Dr. Adams is a very busy guy, seems he's the best neurologist in this area so it was about 45 minutes before I got to see him. I talked to him about my dizziness, about my difficulties in the past with picking up cups and glasses, and my problems with tripping and 'missing' steps, and my inability to balance on one leg. I told him about having such difficulty managing in the heat, that my body temperature seemed to be rising and rising and I seemed to be completely unable to control it.

He sat quietly and listened and then said "You have just given me a classic, perfect description of Multiple Sclerosis." He then put up the films from my MRI and began to show me the different lesions pointing to each one and saying "This is MS," This is MS", "This is a 56 year old brain!" and "This is MS". It was a bit of a shock to hear all this but I remained calm while we went back into the consulting room to talk some more.

Dr. Adams indicated that he wanted to talk with my rheumatologist so they could talk about all my symptoms, but at the moment it is looking less likely that I have Lupus and more likely that I have MS. I was also told that he would like to perform a lumbar puncture on me. I was dreading that, because my last memory of one of those was assisting at one when I was a nurse and the patient (a guy) was crying because it hurt so much! But as Chuck said, "And how long ago was that?" Yes, is was 20 years ago, but it is something that has remained in my mind all that time.

He talked to me about the likelihood of putting an IV in my arm and giving me very high doses of steroids over 3 -4 days, after that I would be put on any one of numerous MS medications, that are all given via injection. I have always said I wouldn't want to have diabetes because I wouldn't want to give myself a shot each day, but it now seems like it's going to happen anyway!

I have a lot to think about.

I haven't felt like blogging!

There's so much going on in my life right now and it's all about me!

My health has been a problem lately. In April I mentioned to my rheumatologist that I was having problems with dizzines. It was really uncomfortable to turn my head to the left or right or to look upwards at something. I got so dizzy and nauseous that I had to close my eyes and wait for the moment to pass. I thought it was probably a side effect of all the medicines I take, but he didn't think so and referred me back to my ENT doctor. One of the tests he did on me was to have me lie flat on the table with my head turned sideways, then he pulled me up into a sitting position as fast as he could. All I can say is - it was horrible. I lost all idea of where I was in space, the dizziness was so severe I even cried out because it was so uncomfortable. He then suggested I see a physical therapist specialising in balance problems to see if that would help.

At my first physical therapy appointment Diane also did the test Dr. Hegarty had done, in addition she checked how I walked and turned and asked me to balance on one leg. At that point I was very shocked to realise I couldn't balance at all. She told me "You are far too young to be this bad Wendy". It was a shock for me to hear that. But over the weeks I have seen her, we have worked out various exercises to help me, but despite all our efforts I was still experinecing dizziness on a regular basis. She tried massage on my neck which was incredibly stiff and I discovered I couldn't turn my head to the left as far as I could turn to my right.

In the end Diane referred me back to Dr Hegarty as she wanted me to have an MRI of my cervical spine and brain, before she did any more work on me. So I trotted off one evening to have that test done, lay inside the MRI for an hour, which I thought was just 15 minutes, and the following week went back to my ENT doc for the results. I thought there would be nothing on the MRI, but that wasn't the case! I was shocked to find there are a couple of lesions in my brain, which seem to indicate I have Multiple Sclerosis!

The minute I read that on the radiographer's report my stomach dropped right down into my shoes, and stayed there for a good day or two. It was not what I expected, it really wasn't. It totally threw me for a loop. I was recommened to set up an appointment with a neurologist, which will be in three weeks time on August 10.