Hi everyone, I’ve had a good read around here and other places but this is the first time posting about my experience. I’m just looking for some feedback on what I’ve experienced over the past year and a half… Please excuse the length of this post, I do tend to ramble on sometimes… And forgive any typos, I’m on the iPad… about 2 and a half years ago I gave up smoking cigarettes after smoking for over 20 years and then 6 months later gave up smoking weed (smoked that for about 16 years, not heavy but almost everyday) I’ve complained of being mildly unsteady on my feet for a few years now, tripping on carpets and knocking the door frame when I walk through open doors but only regarded this as noteworthy just recently with hindsight 6 months after giving up all smoking I took up bike riding because everyone noticed my belly before noticing me when I went to visit them 
Everything went well for a couple of months and I went to London to see a friend and we talked and talked and talked. So much so that my throat went really sore and my speech was affected when I had returned home. I then had a pretty severe cold that took two weeks to clear. I just put it down to the “London lurghy” that you get from riding the tube. Problem was, the speech thing didnt go away. It was like I was slurring like a drunk person. Big words like “necessary” and “probably” and any word that required a lot of mouth and lip manipulation wouldn’t come out right unless I said them slowly and deliberately. I got over the cold and took up riding the bicycle again. The speech thing stayed with me and then I started noticing blurred vision when I looked anywhere except straight forward. It was like my eyes were not in sync with where they were supposed to be looking. Like when you soft focus your eyes to see those magic 3d pictures. This got progressively worse and in the end I had to give up riding the bike because trying to weave through two concrete bollards at speed is quite difficult when you see three concrete bollards! Bollards to that! I still wanted to get fit though so I took up jogging instead. Before getting to actually jogging I tried walking 3 or 4 miles at a time but I had a weird zombie leg thing after a couple miles. My right leg wouldn’t do the heel → toe action that my left leg did. It was like I would swing my leg forwards to take the step but it would flop the foot down instead of the normal action. And then the more fatigued I got the worse it got and in the end I was like a zombie, dragging my leg. “I’m just unfit” was what I thought so I decided to try jogging (yeah I know!) I used an app on my phone called easy 5k which would train you a bit at a time to get you from couch to five kilometres using a method of run for 1 minute and walk for 1 minute It took 9 weeks of run/walk/run but I eventually got to 5k All the while I still had on and off speech issues and sight issues but they were getting better. And then the falls happened. I was loving being able to run/walk 5k , i really enjoyed running by the canal. It was lovely scenery and I felt so good afterwards. but the zombie leg came back with a vengeance! A couple of times I noticed my foot catching the ground as I brought the leg forward (I was doing very slow jogging with short strides, not the strides I was taking when I was walking) And then the foot dragged too much and I fell forwards, really bashed my knee and cut up my hands. First time I have fallen like that since school. So jogging was off the menu. And then another fall on my way to the supermarket. I always walk to the supermarket, its a nice gentle walk and probably the only exercise I get (I work at home on a computer) My leg just switched off for a second and I did a proper hands-knees-and-whoopsy-daisy and bashed my hands up again as I put them out in front of me as I fell. It was so embarrassing! A guy with a walking stick had to help me up! “what happened there?” I asked him and he said I just fell. Didn’t trip or stumble, just fell. had to get first aid and sticky plasters on my hands from the guy in sainsburys. (more embarrassment!) But at least the speech thing had stopped! I was talking normally again But I was getting massive dizzy spells, I’ve since learned its called vertigo. Strange coz I’m not scared of heights This went on for a few weeks or so and I finally went to the GP who gave me some exercises which involved lying down on one side and getting up and then doing the other side. It had some weird name to it, I saw some videos on YouTube at the time on how to do it. That seemed to work. I’ll admit I only did it once or twice, not the weeks of every day that he suggested. I think it was on its way out anyway. I’d left it so long before seeking help. The dizzy spells finished. The speech was good. The blurred vision was pretty much gone (unless I looked to extreme left or right or up/down) I gave up jogging and took up the exercise bike. Can’t crash one of those! But that gave me a wicked sore bum! Which gave me pins and needles. So I bought a big saddle. Better bum but still pins and needles all down my right leg and then in my hands from heel of palm to tip of little finger. So I joined the gym to try the recumbent bike (you can probably tell I don’t give up easily! I was determined to lose the belly whatever it took) But that still gave me pins and needles. So I tried the elliptical. That was awesome, only mild pins and needles in my feet but I could do a big sweat up while I watched some episodes of “breaking bad” And I was losing weight! I’ve lost 6kg so far. It felt so good that I took swimming lessons. I learned to swim finally after 30 years of mildly panicking any time I got in deep water. That was brill and really accelerated the weight loss. And then it happened. An episode or spell or relapse or whatever it’s called. A few days of zombie leg when I finished the gym and swim and then a horrendous day where I could barely walk, I was stumbling, slurring my speech and had the starts of a wicked cold (like the one I had when I came back from London) It was really bad! I was high without being high. I felt proper funny. So funny that I couldnt eat my favourite peri-peri chicken from the takeaway (that’s when my missus knew something was wrong!) I collapsed and fell asleep for hours in the early evening. My missus was ready to call an ambulance but I put it down to getting a heavy dose of man-flu In the morning when I woke up, I fainted when I was on the way back from the loo Maybe not the flu then. I made an appointment to see the GP I explained the whole story (as in all of the above) and he suggested that I see a neurologist. He did some minor tests that i had trouble with like pushing up my foot against his hand and running my right leg down my left from the knee to the foot. He did some magic and was able to get me an appointment within a week or two. The very next day I noticed some spots/sores on my willy (sorry). They weren’t there before and there’s no chance it was an STD The GP girl who I immediately saw said it was a form of shingles. The type you can get from a low immune system which fitted with my bout of man-flu. She said I should mention it to the neurologist when I saw him and prescribed some anti viral tablets. I still had some minor symptons but by the time I saw the neurologist I was mostly better from the flu (and genital sores) He did some tests that I failed like touching my nose with my eyes closed and I couldn’t tell which was up or down when he moved my right big toe. The pin thing he used on my back didn’t ever get to be sharp. I had real trouble running my right heel down my leg again, like my brain had no problem issuing the signals but the leg didn’t receive them properly (like how your sky tv picture goes when it rains heavily, digital signal interference) He heard my story and suggested that I should have an MRI scan of my brain and spine as it was similar symptons to MS. I’d get a letter to go in for the scan. So that’s where I am now. Waiting for the letter to tell me I have to go in for my MRI I have days where I hobble like a zombie. Its not too bad, just like having a minor sprain in my ankle. Not too debilitating, everyone here just calls me cripple. (in the nicest possible way of course) Some days it goes completely away and I think I’m making it all up for the attention but then the dizzy spells come back or the curse of the zombie leg returns Right now I have little dizzy spells, like getting up too fast. My double vision sometimes comes back when I’m looking up and to the right and I have to let my eyes auto focus (like having a sticky lens on an automated camera X 2) I’m just waiting for the scan. I have seen that sometimes even an MRI scan can’t tell if it’s MS or not so I’m feeling a bit in “limbo” I kinda want to know but at the same time I don’t (if that makes sense) My missus is probably more concerned than me but that’s because she cares. As long as I’ve got Internet, I don’t care about most things! I am a little troubled by stories of bladder problems though, that’s the only thing that gives me moments of mild panic (when I’m alone and no one is around) That’s IF it is MS though and for what I’ve read, it doesn’t affect everyone in the same way. IF I have MS then MAYBE I won’t get that bit. Problem is I just don’t know yet and that is probably the most troublesome thing. Not knowing for definite what is going on. I’m still daydreaming that the doctors will find the X gene on the MRI scan and all of this is down to some latent mutant super power and I can go and live at the mutant school for X-men (seriously, I had a dream just like this after I saw the neurologist!) I can live with the zombie leg and feeling like I’m on a ship at sea sometimes so if I can do a deal and just have those symptons then I’m happy to go with that. Tell the banker that I’ll take his offer But could it possibly be something else? Those wicked pins and needles I got from the exercise bike, could that be sciatica? It doesn’t explain the speech thing or vertigo but hey, that could be some other thing right? Well, that took much longer than I anticipated but I actually feel a lot better writing it all down! Thanks for listening, I’d be really happy to hear your thoughts… Andy
Wow - now that’s a long post, lol Hello Andy - and welcome Could it be something other than MS? Yes, it could. Not an X Men mutant gene I’m afraid (that would be cool :-)), but any one of literally hundreds of other conditions that can cause similar symptoms to MS - including relatively easy to treat things like vitamin deficiencies. Does MS mean bladder problems? As you said yourself, not necessarily - MS is massively variable and no one gets every possible symptom. I have to say that it is amazing what you can learn to deal with though - and there are all sorts of things to help MSers cope with incontinence. The way you kept adapting your getting fit / lose the belly plans suggests that you’ll be OK, whatever the diagnosis. Because life goes on. It’s different to what we expected and new challenges pop up on a fairly regular basis, but we can adapt and move on. It’s sometimes hard, but it can be done - and life can still be good. I hope the MRI appointment comes through soon. Karen x
Thanks Karen, that was really nice to read. And sorry for rambling on for so long, I kinda wanted to document it before I forget the sequence. (in case I write an autibiography when they find the X gene) :-p I will still hold on to the hope it is something else less benign and know that I’ll be ok if it is t.
I second Karen’s reply. Whatever’s the matter, you sound like a person who is good at assimilating change into your life and adapting when you need to, and that’s something we could all do with a bit more of, whether we have MS or not.
It’s a worrying time, the waiting and wondering, but dealing with things with a light touch, as your post sugggests you do, can be a really good way of cutting worries down to size and not letting them dominate.
Good luck with it all.
Alison
x
thanks a lot Alison!
I try to keep things light so my missus doesn’t worry too much, oh how she likes to worry!
if she had nothing to worry about then she’d worry why she had nothing to worry about. lol
I just got a letter this morning confirming my head and spine MRI date. I have it on 8th October so only a couple of weeks to wait.
How long does it take after getting the scan to be told by the doctor if he found little aliens in my head? I mean, found anything
The images are on the system immediately. The time to get results depends on two things: how long it takes a radiologist to do a report and how long it sits on the neuro’s desk before he/she acts on it.
If you get a copy of the scan, you can always try alien (aka lesion or white spot) spotting yourself All you do is scroll through the images on the files with FLAIR or PD in the name and see if you can see any white/pale spots or u-shapes.
Most hospitals charge to make you a disc copy (the fee is mainly for the software licence) so, if you take your wallet, you can pick one up right after your scan. It costs £18.50 at my local hospital.
Kx
Ok, I’ll see if I can get a copy. Might make interesting watching. I hope it will go fast, so far it’s gone reasonably fast to get to here. Thanks!
update…
I have now been for the MRI scan of my branium and spine.
wow that machine is bloody noisy!
I wasn’t able to get a copy of the scan, they said they don’t offer it to patients.
so now I’ve got the long wait for results (or it could be a short wait, no way to tell)
luckily my zombie leg has pretty much gone but it’s been replaced with ghost hand and pins and needles in my fingers which is mildly annoying. not as bad as zombie leg though, so better than before! lol
it’s weird how everyone is freaking out when they hear that I am getting checked for MS.
it’s not like I’ve got 6 months to live or anything! (well, I hope)
I’ve been keeping myself busy (distracted) by doing lots of work in the mornings. I tend to get ridiculously tired in the early evening for a few hours and then I perk up again.
oh well, back to waiting…
I’ll update again when I get some news
“They don’t offer it to patients”??? A perfect white lie. Yes, they don’t offer it, but legally they have to give you a copy if you request it! Anything held on computer under our name is accessible by law. So they can slap an admin charge on it, but they certainly can’t refuse you.
A bit of trivia: the noise of the scanner is radio waves. Bit of a shame they can’t make it play a tune at least!
I hope the wait isn’t too long.
Karen x
As everything has been covered by others I will just say hello from me too.
You will have to learn patience on this journey as everything seems to take time but I love your attitude to it all
Pip
I did ask to have a copy! I shall have a write a letter to The Times! :-z
yes me too!
thanks Pip!
hello to you too.
Andy
[update]
I chased up with the neurologist after going to the GP when I had both legs go numb and found out that I have to go to Preston hospital for more checkups.
I asked for more details but the most I could get out of the GP was that they needed to take something out of my back under local anasthetic.
The appointment is in another 3 weeks and I guess results from that will be another few weeks after that.
I’m not holding on to any hope of hearing anything this side of Christmas 
My legs are almost completely numb now, right down to the end of my toe. It’s stopped me from going to the gym and swimming is a complete nightmare. I had one occasion where my legs switched off completely and I ended up on my back in a heap on the floor but I think that was just caused by exerting myself too much that day.
Thankfully, that hasn’t happened again.
I can, at least, still walk to the supermarket so I’m not completely in the knackers yard yet so at least I’m still useful to go and get some milk when we run out
I’ve kind of put my life on hold for the past month, it’s been hard to try and do any real work beyond maintenance because my typing is affected due to my numb-dumb hand and the afternoons are spent in what can be best described as “an underwater fugue” which can sometimes go completely away and I’m left feeling like I’ve woken up from a scary nightmare!
arrgh, it takes ages to type! I’m still 10x faster than the missus though. but for me, it’s glacially slow typing this out.
glad I got the big-ol post done when my hands still fully belonged to me LOL 
Sounds like they’ve booked you in for a lumbar puncture.
Not a lot that can be done for numbness
Do rest lots though - hopefully time will do the rest.
Karen x
Hi Andy
You sound like a fun bloke ~ and it’s good to have a giggle about these things isn’t it?, better than getting glum and morbid anyway… my friends called me Fatima after my recent steroid treatment - the nickname has stuck, even though they can see that I have no beard or adams apple (apologies to Fatima Whitbread if she reads this)
Well I know a thing or two about the ‘life on hold’ thing - mine has stalled for two months now. And as for typing! I am an Administrator by way of employment, so used to type a lot and for many years: it’s not that my hands won’t move or that I can’t move them, I just can’t remember the qwerty layout. So it takes me a good few attempts to find the A,S,D etc. I also have major issues with left & right co-ordination… In the shower, I’ll put shampoo in my left hand and stand there looking at my right hand, puzzelled as to why it’s not doing anything ~ should it be doing something??
Good luck with your LP, and I hope you get the results before you leave your mince pie out for Santa.
Karina
Maybe not a humerous topic but you have a great sense of humour and literary style. I have no advice about you journey Andy, I’m a newbie like you, however if the zombie legs don’t resolve you could always consider a career change, writing seems to be your ‘thing’. Good luck.
hey thanks Rizzo,
I looked up what a lumbar puncture is. Turns out, no need to call the R.A.C
haha! Fatima! what a name to stick.
oh dear, I feel you about the shampoo thing. I nearly spread toothpaste in to my hair like it was gel.
thanks for the wishes Karina, after reading some posts here it doesn’t seem to be that long a wait for me. well it is, but not as long as some people are experiencing.
My missus is worried though, she thinks I’m an important case because I’ve been getting worse each week since the initial visit to the neurologist.
“they must have earlier spaces for important people” , she said.
haha, that’s me, an important person
Andy
haha thanks Milly!
good luck to you too
Andy
[update] I’ve now had my lumbar puncture. A bit of an anti climax really, I thought it was going to be all needles and drama. Turned out it was just a scratch and a lie down for an hour. I didn’t have a headache when I got home and felt well enough to take my usual walk to the supermarket. Today was a different story though (the day after the hospital visit)… I had a HUUUGE headache when I got up this morning, I’d made sure I had plenty of fluids the day before but my missus didn’t think it was enough, maybe she was right I just went back to bed for another few hours and now I seem to be ok. My back is a bit sore though, more like a bruise type of sore so not too bad. I’m glad it healed and I didn’t leak human juice everywhere though! My next appointment with the neuro is next Monday so I guess I’ll find out some news then…I’m still holding out for the “we found evidence that you’ve got an X-men gene” diagnosis.