I found an old blog of mine that I wrote when I was losing weight. I used it to chart my progress and share my weight loss experience with others doing the same. It was during this time that I started to experience unusual symptoms and feel unwell. I've taken extracts from that blog which chart the progress of my MS, from the first symptoms up to my first MS post on this blog.
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Thursday, 19 August, 2010
I've had a busy week. On Monday I had blood taken for testing to see if they could work out why my mood is changing so radically. I'm still riding an emotional roller coaster and don't know how I'm going to feel from one minute to the next. I'm more changeable than the weather (and that's saying something!).
I'm still not sleeping very well – up 'til after 1am and awake just after 6am, so I'm getting a maximum of 6 hours on a really good night, which is less than I'm used to. I felt OK until today, although my concentration is completely shot and I've started to make silly mistakes at work. I'm really struggling today, though and can't get my A into G. I need to get this sorted out.
On Friday last I started to experience pins and needles in my hands. It was the oddest sensation and I still had it on Saturday. On Sunday my feet decided to join the party while I was out shopping – my toes were tingling like nobody's business – then on Monday, while I was washing in the morning, I noticed that the tingling had spread to the whole of my body. So, after seeing the nurse for my blood test I made an appointment to see one of the doctors the next day.
I explained my symptoms to the doctor, who suggested I may be hyperventilating. This was suggested the last time I experienced pins and needles, although on that occasion it was due to a trapped nerve in my neck* and the tingling was localised to my thighs and only when I bent my head forward. This is completely different and more than a little worrying. I was less than reassured with the doc's diagnosis and he didn't even offer any suggestions for treatment. He offered me sleeping pills for my poor sleeping pattern (I declined), but otherwise he wanted to wait and see what my blood results show. I should get those next week.
I've noticed more symptoms since seeing the doctor, namely a slight weakness in my legs when climbing stairs (which I don't do very often) and I've started getting tremors in my hands, which is a bit of a worry. That only started yesterday and is getting worse. I am trying to get another appointment for next week, but it's not easy with the way the appointment system works at my surgery. I got lucky on Monday being able to see the doctor Tuesday, but that was an exceptional occurrence, rather than the rule. But I will be going back, as I'm not sure how much longer I can stand this. I also need to discuss my test results.
Tuesday, 24 August, 2010
I've had an eventful week since I last blogged. I've still got my pins and needles – no change there. I'm still a medical mystery.
I had an appointment with the doctor to discuss my blood test results. Unfortunately they didn't show any abnormalities, other than low iron, which is a life-long condition, so not unusual. I filled the doctor in on my pins and needles symptoms and he gave me a thorough examination. I passed with flying colours (no weakness and my reflexes were fine), so he said he thought a referral to a neurologist might be the next step. I don't know how long that'll take to come through – these things usually take months, rather than weeks – so I might be all better by the time the appointment comes through. I'll just have to wait and see.
I went to Zumba this evening. I really didn't feel in the mood, but I haven't done any exercise for 2 weeks, so I made myself go. I have missed the class, I just didn't feel the best this evening. I made it through the class, but just barely. I ran out of energy about 45 minutes in and my arms and legs started to feel like lead weights. I could barely lift them and did the most perfunctory performance for the last segment of the class. I really wanted it to be over so I didn't have to lift my arms or jump around any more. I nearly fell over several times during the class, as my feet gave way under me. Tom noticed at one point and asked if I was alright. I said I was, but I didn't feel it. My breathing was fine – I wasn't having any trouble in that direction
– but everything felt like a tremendous effort. I felt like I'd been lifting weights and had trained to failure. If you've ever done that, you'll know exactly how I felt. I was so glad when the class finished and I could go home. I swung by the supermarket on the way home and bought a ready meal, as I really couldn't face cooking.
I've decided I need to speak with my line manager and make him aware that I'm having health issues, as it's starting to affect my work. I'm making silly mistakes because my concentration is poor right now. If he's aware of it, then maybe we can put a process in place as a safeguard until I'm back to my old self again.
Friday, 27 August, 2010
I went to Zumba tonight and had to sit down about half way through, as I took a dizzy turn. I haven't been feeling great this week – I've been bloated and windy and I feel like I've been working my abs to death, even though I haven't. I've got this tightness in my belly that I can't explain – it's certainly not because of exercise. While I have been exercising this week,
I've been feeling like this since last weekend, before I went to Zumba on Tuesday, and I hadn't done any exercise for a couple of weeks up until then, so I'm at a loss to explain it.
The dizziness tonight was a first. I had a headache earlier this afternoon, but I put that down to the office being hot and stuffy. I've been really lethargic the last couple of days and I wasn't going to go to Pilates last night, but I forced myself, just as I forced myself to go to Zumba tonight. The Pilates wasn't challenging at all, but I hardly put any effort in to the class tonight. I very nearly didn't go, as I wasn't feeling at all enthusiastic about it. After my performance on Tuesday I thought I should give it a miss, but I knew I'd regret it if I didn't at least give it a try. Tom noticed I wasn't my usual self and asked if I was OK. I said I was, but that was a fib. I'm really tired, but I'm still not sleeping properly. I don't want
to take pills, as they make me groggy and befuddled, and I'm already befuddled as it is through tiredness, so that's not going to help any. Meh, I don't know what the answer is.
Wednesday, 01 September, 2010
I'm still feeling rotten–still got the pins and needles, dizziness, etc. and today I have a headache and feel a bit achy in my joints, so I might be coming down with a cold (there's a lot of it going around in the office at the moment). I couldn't get to sleep last night (I was awake until at least 2am) and I woke at 6am this morning in a panic, thinking I'd overslept for work. Not the best start to the day.
Thankfully I am on holiday next week, so I will have the chance to rest and can choose to sleep all day, if I wish. I have tried to make an appointment with the doctor, however the surgery is closed for "training" (whatever that means), so I will have to keep trying until they open again.
I've cancelled dinner at Bev's this evening, as I just don't feel up to it. I just want to go home, get into my jammies and pass out on the couch. So I will.
Friday, 03 September, 2010
I've been feeling crap for weeks now. My symptoms include pins and needles all over my body, dizziness, nausea, weakness in my limbs when exercising and now, over the last few days, the feeling that I'm wearing a corset that's getting tighter and tighter and squeezing the breath out of me**, as well as a sore lump in my upper abdomen, leading me to suspect I have a hiatus hernia.
I went to the doctor's this morning and saw a doctor I've never met before. "Great", I thought, "no preconceived ideas". After the initial introductions I told her that I thought I might have a hernia, so she got me up on the examination table and poked and prodded me. I winced when she got to the sore bit, but her diagnosis was "fatty lumps". She said I had several "fatty lumps" in my abdomen, to which I concurred, however I pointed out that only one of them was causing me pain. I said, "I know my fat has changed a bit and seems to have 'broken up' since I lost weight, but this is a new lump, which I only noticed on Wednesday, and it's the only one that hurts. I only hurt here" (points to sore lump). Her response was that she couldn't diagnose a hiatus hernia by prodding me, that a hiatus hernia didn't cause any protrusion (really???!) and that she thought I had gastritis (seriously???!). She said, either way, the treatment was the same for gastritis and a hernia, so she wrote me a prescription for a month's worth of indigestion medication. Gee, thanks, doc. And how does your diagnosis explain the recent dizziness, not to mention the pins and needles? Oh, we'll just have to wait until I see the specialist in 10 days' time. If the medication doesn't work, I've to go back and get a referral to hospital where they'll stick a camera down my throat into my stomach "and we don't want that, do we?!" Well, yeah, we do if it'll diagnose what's wrong with me! Thanks for nothing!
To say I was disappointed is an understatement. I was annoyed that she dismissed the dizziness and didn't even take my BP. I
should've asked, but I was so wrong-footed by her off-hand manner that it didn't occur to me until I was in my car. I haven't had my BP taken in months – seriously, you'd think it'd be one of the first things they did, but none of the 4 doctors I've seen have done this. WTF?! So I'm going to make another appointment, as I took another dizzy spell over lunchtime today, which means I'm going to miss Zumba tonight and I'm not happy!
Wednesday, 15 September, 2010
I saw the specialist on Monday***, who couldn't find anything wrong with me and suggested further investigation was needed via my GP. She did suggest that I may be reacting to the Amitriptyline I take for nerve pain in my leg and said that prolonged use can cause weird side effects. So, now I have to wait for my GP to return to work (she's currently off sick) so I can get more tests done. Woo-hoo(!)
Wednesday, 22 September, 2010
I'm still not feeling great – been having headaches a lot lately. The pins and needles have gone for good, I think, but I'm still taking dizzy turns and I'm incredibly tired. I'm trying to get an appointment with my doctor, but haven't been successful so far. I have to try again tomorrow morning.
I went to Zumba on Friday with my friend, Bev, who enjoyed the class, but didn't find it challenging. She goes to another class on a Tuesday, which she wants me to try. Quite frankly, I don't think I'd survive it, but I said I'd try it just the once. She's put my name on the waiting list (it's an extremely popular class).
I'm going to Pilates tomorrow evening and Zumba with Bev on Friday.
Saturday, 30 October, 2010
I never got to the bottom of my mystery illness a few weeks
back. The symptoms cleared up on their own and left my doctor scratching her head. Not very satisfactory, but at least the pins and needles and dizziness have gone away.
I've been going to Zumba regularly – 2 or 3 times a week – but I've had to cut back, as I have plantar fasciitis and my podiatrist told me to take it easy until it clears up. That doesn't mean stopping altogether, of course, just toning it down a bit and doing smaller movements instead of the usual jumping about. He gave me stretches to do which, because of my hypermobility, don't seem to be making much difference. I have a follow-up appointment at the end of November to see how I'm progressing.
I've had a headache since Tuesday. It started as a dull ache, but on Wednesday it felt like a full-blown migraine. I had to take the day off work, as it was excruciating to open my left eye. The pain is still there now, but it mostly hurts when I move my eye, particularly when I look upwards. It also hurts when I press on it, so I think there might be something wrong. I may have pulled a muscle (if such a thing is possible), or there may be something else going on. I'll need to make an appointment on Monday to see the doctor (assuming, that is, I can get one!).
Wednesday, 10 November, 2010
I've been suffering from a headache and foggy vision in my left eye+ for a couple of weeks now. I decided to go to the optician last week and had an appointment on Thursday. Unfortunately, the optician couldn't find anything wrong with my eyes, although he did say my prescription had changed in the left eye and would like to see me again in a month. That was too long for me to wait, so I called my doctors' surgery and managed to get an appointment on Friday. I saw a doctor I haven't seen so far this year, but have seen in the past. However, I was less than impressed when all he was prepared to offer me was a prescription for painkillers. I got upset and told him about all the weird and wonderful symptoms I've experienced this year that came and went
without explanation and how I was scared I might lose my sight. He said (to calm me down, more than anything!) that he'd give me a call on Monday at lunchtime to see if there was any change with my vision.
True to his word, he called me on Monday at lunchtime, by which time my eyesight had worsened. When I told my doctor this he said he'd arrange an appointment for me at the Eye Pavilion for further tests. He called me back within minutes to say that I had an appointment for yesterday (Tuesday) afternoon. I was both surprised and pleased at the speed of receiving the appointment – I didn't want to hang around any longer than necessary.
Yesterday afternoon I went to the Eye Pavilion, where I was seen first by a nurse. She took a history, asked lots of questions and gave me a sight test before checking my eyes. She gave me anaesthetic drops to check the pressure in my eyes (not the puff of air, but a device that actually touched the eyeball – gruesome!), dye drops to check for scratches on the cornea, then she said she couldn't see anything wrong and I should see the doctor, so she put dilating drops in my eyes to dilate my pupils and told me to go back to the waiting room to let them take effect before I saw the doctor.
The doctor asked me all of the same questions again (he couldn't read the nurse's notes), then examined my eyes. He made lots of
positive noises before announcing that he could see the problem: I had swelling in the discs at the back of my eyes, the left being worse than the right. He said he thought I was suffering from intra-cranial hypertension. You could have knocked me over with a feather when he then told me that the next step was a lumbar puncture (LP) to confirm or rule out his diagnosis. Oh joy(!) He told me to go back to the waiting room while he arranged it, then called me back into his consulting room to tell me I was to attend the hospital this morning. Bloody hell, that was quick!
When I got back to the office I called my best friend in the world, Bev, who immediately offered to go with me. I was so grateful to her, as I wasn't looking forward to going on my own. So this morning I turned up at Bev's house at 8.30am (far too early!) to drive us to the hospital (I'd called and asked if it was OK to drive after the procedure).
We got to the hospital far too early, then had to hang around for ages before I saw the doctor. He took me into an examination room, took a history, asked lots of questions, looked in my eyes and gave me the usual neuro tests (reflexes, eye movement, balance, limb strength, etc.) before declaring that I was fine and he couldn't see anything wrong with me. I responded, "You're not looking at things from my side(!)" He said OK, and to go back to the waiting room while he arranged a CT scan for me.
After an hour or so a nurse came to take me downstairs to wait for my scan. After another 20 minutes I was taken in to the room with the scanner. They did a basic scan first of all, then left me lying there in a draught while the radiologist had a look at the results. The nurse then told me they were going to inject contrast dye for a contrast scan, which was fun, as she couldn't find a vein (in my good donating arm too!), so she had to call in another nurse, who was able to get the venflon in my other arm and hook up the injection system. They ran the scanner again, then injected the dye, which made me feel like I was sitting on a heating pad – a very odd sensation indeed.
I was then told "you can go" and, had I been on my own, I might have left the hospital. Thankfully Bev was there to keep me right
and we went back upstairs to wait for the next test – the lumbar puncture (yay). By this time it was lunchtime and a woman came around offering soup and sandwiches to everyone waiting to be seen. I hadn't realised how hungry I was until I smelled the soup – lentil – and I grabbed a tuna sandwich to go with it. Bev declined the soup, which I told her was a mistake, as it was really good! However, the excitement of lunch had completely worn off an hour later when I was still waiting for my LP.
Another doctor finally came and took me and Bev along to a side room to perform the procedure. Bev has had several in the past, but never witnessed one, so she was pleased for the opportunity to see it from the other side. I had to take my top off and lie on my side with my knees drawn up to my chest in the foetal position. The doctor was impressed that I got into position right away (it's not hard, I sleep like that all the time!). She prodded my back for a while, then swabbed my back with iodine to disinfect the site. She then injected anaesthetic in the area from where she intended to draw the fluid, which was rather uncomfortable. There was more prodding, which felt a bit "jaggy" as she tried to find the space. She tried inserting the
needle several times, hitting a nerve each time, which made me move involuntarily and got me fretting about paralysis (I know, I know, but I was vulnerable). She was having a lot of difficulty, then I remembered about my disc compression at the base of my spine. I'd forgotten all about it and hadn't mentioned it to anyone. I felt stupid when I told her, but she said not to worry, that she'd try higher up. This time, after only a couple of attempts, she managed to get the needle in and tap my spinal fluid. She asked if I was OK and I said, "Yes, but it feels like you're drilling for a kidney!"
She checked the pressure of my spinal fluid. Normal, she told me, was anywhere between 8 and 20++. I registered 24.5, so I was a little high, certainly higher than normal. I could feel wetness on my back as she filled vials (note the plural!) with fluid (CSF). When she was finished she asked if I'd like to see it and I was pleased to see it was clear, but was surprised by how much she'd taken. It was certainly a lot more than the 15 mls she said she was going to take! She cleaned me up and said I could get dressed. As soon as I sat up I felt as though I'd been coshed over the head – one of the worst headaches I've ever experienced in my life! Bev said I should really have lain down for a while before getting up, but that wasn't offered as an option. I guess they were busy(!) The doctor told me to keep the plaster on my back for a couple of days and not to get it wet. I'll have fun washing myself(!)
I went back to the waiting room to see if they wanted to take some blood; they did. The staff nurse didn't mess about and got the needle in, filled her vials, and took it out again without any discomfort whatsoever. The best part of the day (except maybe lunch). And that was it. I was told I could go home. No explanation about what would happen next, how I'd get my results or anything. Thankfully Bev was there, yet again to keep me right. She said, as long as there was nothing seriously wrong, I'd get a letter in a few days. If something was wrong they'd call me and get me back in for further tests or treatment.
Saturday, 20 August, 2011
(I'd stopped blogging on the weight loss site by this time, but posted a catch-up summary for friends on the site who'd been asking after me)
I got a letter through in January asking me to go back in February to see the neurological consultant. When I arrived for my appointment, the consultant was confused, as she couldn't find my MRI results. I told her, that was because I hadn't had a MRI(!) Apparently, the doctor I saw in December had dropped the ball. He hadn't ordered my MRI as he should have, and the analysis of my CSF was incomplete. She wasn't best pleased. I asked if she would want another LP (lumbar puncture), but she said it wouldn't be necessary.
She put me on the list for a MRI scan and said someone would be in touch. She told me to make an appointment with her secretary and we'd discuss the results of the MRI then. So, off I went to wait for my appointment.
I didn't have long to wait and received a call at work 3 weeks later offering me an appointment the next day. So, it was back to the hospital for my MRI scan. Not an experience I'm in a hurry to repeat. Instead of the huge scanners you see on the TV, it was a mobile scanner, which was incredibly claustrophobic. They needed to know my weight before they put me in, as there was an upper weight limit and I only just qualified for it. Had I been at my heaviest weight I would never have fit in the scanner and would have had to wait for the main scanner in the hospital. As it was, it was a tight squeeze and my arms were pinned to my sides while I was inside. And it was noisy! Afterwards I likened it to attending a rave in a coffin(!)
After the scan I went away and waited for my appointment
with the consultant, which was at the end of May. Except I didn't see her, I saw her registrar and he didn't tell me anything that she hadn't. The upshot of all my tests is, they think I have latent MS. After looking at my medical history, they think I've been displaying symptoms on and off for years – pins and needles, limb fatigue, dizziness, clumsiness, tiredness, depression – but my symptoms are sporadic and not bad enough to require treatment yet. So, I've
to keep it until it's worse, basically. They took lots of blood to run tests to rule other more exotic conditions out, but that was pretty much it.
I haven't heard any more about my blood tests. I phoned the hospital, but the registrar had my notes and hadn't sent me the letter he was supposed to(!) The secretary said she'd chase him up. That was 2 weeks ago and I'm still waiting. Doctors(!)
I've had to give up Zumba, as I simply don't have the energy for it at the moment.
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That brings us up to my first MS blog on here, My first MS flare-up. It was interesting for me to look back at how the MS manifested itself, as I've forgotten many of the initial signs and symptoms and the dates/times when things happened. It's all rather muddled in my head now.
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*It was not a trapped nerve, it was Lhermitte's Sign, which the neuro consultant should've picked up on but, instead, he told me I was imagining it!
**Also known as the "MS hug".***I have absolutely no recollection of this meeting. I've no idea who I saw that day.
+I had optic neuritis.
++I've since been told that this is incorrect.
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