transversemyelitis

The Day My Diagnosis Changed.

In January last year I was diagnosed with an auto-immune neurological condition, Transverse Myelitis.

There are a few things that I have learned about neurological conditions.

They are difficult to diagnose
Everyone is different, even with the same diagnosis
Diagnosis can change

My diagnosis changed on 10th January, one year and 9 days after my first diagnosis. I do not have Transverse Myelitis, I have Stiff Person Syndrome.

First, I need to talk about my feelings. At the beginning of this year I was having real trouble with coping. Maybe it was exacerbated with early January being a bad time of year for me anyway but I was feeling down because I know I’ve not really made much improvement health wise and I had a feeling a new diagnosis was coming up. I’m not a doctor but I’ve learned from talking about Transverse Myelitis with other sufferers that symptoms do improve in time. You can become more mobile and the pain decreases, but life can carry on. Of course all sufferers do have times when the condition makes life difficult for them, once the damage is done to the spinal cord it cannot be undone. (well, not yet anyway, but soon maybe.) Sufferers are split into three groups, those that recover (Although they still have symptoms) those that partially recover and those that never recover. I’ve noticed that many in the third group go on to get another diagnosis, the most popular one being Multiple Sclerosis.

Again, I’m no doctor but it can’t be denied that TM is like the beginning of MS, the difference being with TM you don’t get damage in the brain and no further attacks occur. BUT, if you do have MS then the attack on the brain can happen after the initial spinal cord attack. So, it makes sense (to me anyway) that someone with TM can go on to get MS and that TM can be the initial attack. Both conditions are incredible similar, both conditions often take a long time to diagnose.

I suppose it’s fair to say here that I thought my diagnosis was going to be changed to MS.

However, despite my ‘new’ diagnosis being very similar to Transverse Myelitis in the beginning, there are factors which have been taken into consideration that have shown that it isn’t.

So, what is Stiff Person Syndrome? Well, it’s another rare condition, lucky me, one in a million! It is an auto-immune condition that can affect the spinal cord, hence the symptoms which mimic TM, pins and needles, spasms, banding, pain etc. However, it can be identified by certain anti-bodies in the blood.

I was tested for SPS last year and I thought I was in the clear because I don’t have the main anti-body that is present in diagnosis, namely ‘anti-GAD.’ I also had electrical tests on my muscles and nerves and my consultant has studied the results in detail. He found another anti-body in blood, I don’t know which one at the moment, which is an indicator but has only been discovered in last 5 or 6 years. This along with the electrical tests has given me the diagnosis. Plus, the anti-GAD anti-body is only found in around 60% of SPS cases.

That’s the medical bit out of the way, phew!

In general, my experience of Stiff Person Syndrome, apart from the TM similarities mentioned earlier, is the stiffness. Now, that’s a surprise isn’t it! How could I not have noticed before? Well, another symptom of TM is spasticity where muscles become stiff and tighten up…so, stiffness! I have it in the most common place for SPS, that’s the lower part of my trunk. This is why I find it difficult to walk. I also have it in my feet and my toes are permanently turned upwards, I can’t curl them down very far at all.

What happens next? SPS, is not curable but it can be treated. I may be relieved of some of my pain if the treatment works. I start an intensive course of steroids by IV at the hospital today and for the rest of the week and then continue with oral steroids for three months. Then I go back to my consultant and see if it’s made any difference. There is hope that I will feel better after this, but if not then there are other treatments available, even though they are not readily offered. The main objective will be to stop the condition from getting any worse. SPS is a progressive and the stiffness and spasms can increase.

Here is a description of Stiff Person Syndrome from The Tinman

Stiff-person syndrome is a combination of symptoms which can include muscle stiffness, rigidity, spasm, muscle overactivity, specific contractions, seizure activity, and heightened response to stimuli resulting in exaggerated startle reflex triggered by noise, touch, or emotional distress. The classic pattern begins with stiffness and rigidity of the axial (skull, spine, and tailbone) muscles and can progress to the limbs. Stiff limb variants first affect primarily the leg muscles, and occasionally the arm muscles.

If untreated SPS can lead to total body rigidity, that’s right, every part of the body, including the face so you can’t speak. Thankfully, now that I’ve been diagnosed the treatment will prevent this happening.

I’m still coming to terms with the new diagnosis, and at the moment I’m in confusion. Everyone says not to Google but of course you do, some of the sites are not very helpful at all, others focus on the real scary stuff (I’ve read several medical studies where the patients all die within a year!) I have every confidence in my consultant giving me the best options from now on. He could have just left my diagnosis at TM but he knew something was not quite right and did several tests to find out what was really wrong with me. My future does not have to be grim, just different.

One in a Million - living with Stiff Person Syndrome

One Year Later

by Anne Sweet 8 Comments

It’s seems strange having an anniversary on New Year’s Day, at least it’s not one that’s easily forgotten, not that I would ever forget.

A year ago today I woke up with pins and needles. I was trying all I could think of to get rid of them, I even tried asking Google and my friends on Facebook. I took a nice relaxing bath thinking it might help, but when I got out I felt worse because the pins and needles had spread. I went to Accident and Emergency at the hospital and sat and waited with all the revellers that had been hurt in the previous nights celebrations of the New Year.

The next few hours were a blur as I became paralysed and was rushed for an MRI. I discovered that I really don’t like MRIs and they had to take me out to try again later under sedation. I was admitted to a hospital bed and there I stayed for two weeks. I was diagnosed on my second day with Transverse Myelitis and they continued with blood tests and a lumber puncture to try and find out why I had it. They had no answers.

Slowly I regained the use of my right arm and then my left. It was a little longer before I could stand again, then I had to learn how to walk like a toddler, one wobbly foot in front of the other.

Research and talking to other sufferers made me realise that I could recover within six months, but if I hadn’t then I would likely to suffer some sort of disability for the rest of my life. If I did recover then I could still suffer symptoms on and off for the rest of my life. There is no cure. Everyone who has it is different. It affects the spine and depending on which part of your spine is affected it affects different parts of your body. The damage is irreparable, so far, but the effects seem different for everyone.

My damage was at C3 and T10, this means my arms are affected and then I have symptoms from the midriff down to my toes. I have areas of complete numbness, areas of constant pain and pins and needles.

The pins and needles I had on New Years Day last year have never left me. I’ve been told they might never leave me so I may as well get used to them. I hate them but I try not to let them defeat me, they are part of me now. I don’t really know if they are not as severe or if I’ve just got used to them.

Last year I tried to get on with life, I tried to assist my recovery, I refused to believe that I wouldn’t get any better. I had HOPE.

I want to share everything but I can’t, this goes much deeper than dealing with my illness, but my illness is ruining my life.

2016 was a crap year, and not just for me. So many horrible things going on in the world.
2017 brings a new hope, a fresh start. But does it? Can anyone honestly believe that any of this mess is going to get any better?

2017 for me is a new year of dealing with this illness and my family issues. A year has passed and my chances of recovery are slipping away. Maybe I will show some improvement, maybe I won’t but the hope and positivity I had last year has gone.

Or, maybe my family are right and I have become self consumed with my pain and misery. I should see someone, I should get help, I’m not right in the head.

Maybe I shouldn’t be telling you this.
Maybe no-one will read anyway.

Mummy Times Two

Getting Zapped – More Hospital Tests

by Anne Sweet Leave a Comment

I had some tests at the hospital last week and it was quite a surreal experience.

I arrived for my 6.30pm appointment and the hospital out patients was closing down for the evening and spookily quiet.

I waited for no time at all as I checked in, was told immediately what desk to go to, and as I arrived at the desk there was a nurse waiting for me to go straight into the consultation room. How often does that happen?

The Dr was in soon afterwards and I had to lie on the bed on my side. Not my most comfortable position, but he needed to get to my back. From my position the only thing I could see was the wall so my other half has told me what happened next. I didn’t feel anything.

I had two needles put into the muscles either side of my spine. These were to measure the electrical activity in my muscles. I was then asked to move my head back and forth as the activity was recorded on a noisy machine. This procedure is called Electromyography. I can only speak from experience in saying I felt nothing, I do still have a lot of numbness in the areas tested so it may be more uncomfortable for others.

The next part of the test was a Nerve Conductive Study. This measures nerve and muscle function and is used in the diagnosis of a lot of spinal conditions. During this test I had little pads attached to various parts of my body and I was ‘electrically stimulated.’ On my legs I felt nothing but my legs did move. By this time I was getting really uncomfortable so I was happy to be able to go onto my back. The pads were then added to my arm and I found out that electrical stimulation was actually little electric shocks! It hurt a little but I was more fascinated by the way they were making my fingers move with their shocks and the pain was soon forgotten. I can imagine this kind of test being quite stressful for someone with normal sensitivity.

I now have to wait a few weeks for the results.

I know my Consultant is testing to see how my nerves are reacting and if he can pin point any damage. He is also testing for Stiff Person Syndrome, but I’m pretty sure I don’t have it.

I’m still getting used to my new medication but I’m not sure if they are making me worse instead of better still. I’m now approaching my fifth week of taking them and I thought my body would be getting used to them by now, especially as I have to increase the dose next week. I’ve been a lot more tired which is bad enough, but I’ve also been more unsteady when I do walk, I’ve walked a lot less and I’m getting more pain.

I’m also waking more in the night, even though I take strong painkillers to help me sleep better. I woke the other night in so much pain I got scared for a while. In my sleep state I’d forgotten that my body was damaged and the pain I often get just surprised me by waking me up.

Then last night I’d only been in bed for an hour when I woke up because it felt like someone was shaking me. It took a few seconds to realise it was my body shaking and I couldn’t stop it. I managed to turn over to reach my mobile and I quickly sent a text to my partner. It just said, can you come please. He came straight away but by the time he had reached me the shaking had stopped but I still felt very weird and quite nauseous. He felt the muscles in my legs twinging and I realised that all I had experienced was muscles spasms. I vaguely remember having them when I was back in hospital over nine months ago. They’ve not been so bad since, until last night.

I get a lot of muscle spasms but they are usually the stiff type, you can’t tell so much in my legs when I’m having a spasm but you can in my feet. I may even feel brave enough to record it one day. My feet go stiff and my toes separate. Sometimes my feet turn inwards, or outwards (They are not fussy) and during a spasm I cannot move or control them at all. The pain is pretty bad while it’s happening, but I have got used to it. This can happen ten or more times a day.

My legs stiffen too but I don’t get the twitching type of spasm very often. I get them more when I’m in my wheelchair because my body is in a more ‘confined’ position. Or late at night when I am tired. They don’t last as long as the stiff spasms. I’ve not had a continuing spasm of such extreme since the very early days of my condition.

So, is it my medication making me worse or is it my condition getting worse?
I don’t know so I guess I’ll have to speak to a Doctor. I’m going to wait until I get the results of my tests and see if they have any answers first. I know my GP will not have a clue and getting an appointment at the hospital is not so easy.

In the meantime I’m determined not to get any worse, especially before my big day next month.

Medication – Word of the Week

by Anne Sweet 4 Comments

I’m in the situation at the moment where my medication is ruling my life.
I had a new medication prescribed by my neuro consultant a couple of weeks ago. As soon as I started taking a very low dose I felt ill. I was told to keep on a low dose for 14 days and then increase it a little. That time has come but I’m worried because this medication is taking over.

This week I’ve done not very much at all. I did take the kids to school on Tuesday because I had a meeting with Star’s counsellor. I will also be taking them to school this morning as I am going to a coffee morning with the Senco at Star’s school. On Monday I went shopping at the supermarket for the first time this year, which is huge really…but that’s it. I’ve done very little else. Not only have I not been out much I’ve not done much in the house either. I’ve kept up with the washing and cooked meals with the help of Graham. I may have washed up once or twice.

I’ve just been so tired and in pain that I feel like I’ve stepped back to how I was 9 months ago and I’m not happy. I know it’s down to the new medication.

These new pills are popular with those who have my condition, Transverse Myelitis. They help to release the tension in muscles, reduce spasticity and muscle spasms. If they work it will feel like a miracle. I have to keep taking them and hoping that the side effects stop. I have to keep hoping they will work and give me my miracle.

In the meantime my week and my life is dominated by the effects of medication.

The Truth About Being In Hospital

by Anne Sweet 10 Comments

At the start of this year, I was admitted to hospital as an emergency.
The only time I’d been in hospital for anything other than having babies was when I had a tonsillectomy at seven years old.
I was scared about what was happening to me and to be honest my fear overcome my worry about what was going to happen at home. This lasted a couple of days as I lay there barely able to move having test after test and hooked up to a drip for my drugs.

When I started to improve a little that’s when I started worrying about home and missing everyone.

However, I was still really unwell and I decided that there was nothing I could do and they could cope on their own for a few days.

Those few days turned into weeks, but I was still unwell and they seemed to be coping well. I spent my time mostly in bed. They would get me out, shower me and make me sit in the chair next to my bed. After a couple of hours I would say I was hurting and ask to be put back into bed. There I would sleep, or read. Nothing more. I had blanked myself off from worrying about things I couldn’t change and focused on feeling better.

Each day was the same routine, I had breakfast brought to me at the same time, I had my shower at the same time, I had lunch and dinner and in the evening a cup of Horlicks and a biscuit. I didn’t have to move. No cooking, cleaning, bed making, washing up, laundry etc.etc. etc. Just me lying in bed, or sitting in my chair, reading whenever I felt like it.

In the evening more mobile patients would visit our ward and sit and chat. They may have been more mobile but their health was not so good. They had been through a lot and had a lot more to come. But still they visited and chatted and we laughed a lot too. I was lucky, I had hopes of getting better, I didn’t have anything life threatening and I didn’t need any operations. I was truly lucky and these amazing people showed me that.

Sometimes I’d have visitors come to chat which was nice. I’d say it broke the boredom but if I’m honest I didn’t really get bored. I don’t know if it was because I was so unwell but the rest and doing nothing was actually agreeable, not boring. I missed my kids but they didn’t seem to be missing me much. They had everything they needed.

When I was able to I googled my condition and tried to figure out how long it would take to recover. My consultant was saying I would get better and Google confirmed 2-8 weeks. It looked pretty good, I would be back to myself in a couple of weeks….but I wasn’t. Eight weeks seemed a long time to wait for recovery.

Then after two weeks my consultant decided I could go home. My feelings were so mixed up. I wasn’t mobile and I knew I wasn’t going to be able to do anything when I got home. I knew that things would have got bad in my absence, would the toilets have been cleaned, would the laundry be done, would the bedrooms be tidy. My other half is really good with looking after the kids and cooking, but his idea of housework is running the vacuum around the living room carpet and that’s it.
Even more worrying was…had the Christmas tree been taken down, it was mid January now!

My other feelings were excitement of being around my family again, being in my own home and my own bed. It had taken me a while to get used to the hospital bed but fiddling about with the controls I’d managed to stop slipping off the end.

My house was adapted for me before I got home, I had aids in the bathroom, around the toilet, in the bedroom, in the kitchen, a new banister on the stairs so we had one on each side and, of course, my walking aids. Apparently my condition did not warrent the hire of a hospital wheelchair despite my not being able to walk very far.

By the time I had to go home again I was feeling very mixed up. My family were coming to pick me up but I was sat there in my pyjamas, unable to reach my clothes or get dressed, unable to pack up my things, unable to walk basically. It drove me mad. I like to be in control. The tea trolly came around while I was waiting and I suddenly felt so sad, I wanted to stay in the hospital where I had no worries and everything was done for me. I couldn’t go home, I couldn’t do anything for myself.

I was also feeling really excited at seeing my family and going home.

I was also going to miss the friends I’d made on the ward.

I was also going to miss the lovely nurses.

I went home, it was painful. Painful in the chair to the car, painful in the car, really painful getting into the house without a wheelchair. I tried to keep smiling, I was going home, back to my family.

When I got home and sat down I cried. I couldn’t help it. I cried for lots of mixed up reasons.
I cried with relief at being home.
I cried because I’d missed my kids.
I cried because I was in so much pain.
I cried because it was obvious that the Christmas tree had been taken down in a hurry because I was coming home and that there were the kids Christmas presents all over the floor. Christmas had only just ended at home, despite everyone ending it nearly two weeks ago.

It was so hard being at home in the early days. I couldn’t do anything and had gone from the one who did everything for everyone to being the one that had to ask everyone else to do everything. I couldn’t wait to get better in eight weeks…well there was only six to go.

Then I started talking to other suffers and the truth dawned.
It seems that only a third of people with my condition, Transverse Myelitis, get better in eight weeks. Just one third. I was not one of them.

It’s now eight months later (nearly nine) and I’m a lot better but I’ve still not recovered. In fact I think at least fifty percent of my recovery is just me getting used to my body being so useless and getting on with it. The pain, I believe, hasn’t changed much at all, but I’ve gotten used to it so it doesn’t bother me so much.

I still miss being in hospital. Life is so hard, everything is so hard, even the simple things. I’d love to go back to just lying there and not worrying about anything. Is that bad? I don’t know why people hate hospitals so much, the truth is I quite like it.

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