This is a massive ask of you… I hope you don’t mind!! I am going to see my neuro tomorrow after a year long wait so I have written what’s been happening over the last 12 months, (He knows what’s happened before then, I last seen him about a week before I went on holiday to Corfu) Would any of you mind reading this long epic story and advise me whether its too much or points I shouldn’t bother with. I would prefer it to be short and sweet so he’ll read it, but also wanting him to know what has been going on… Any help or advice would be highly appreciated!!! Thank you xx The epic story… (The last 12 months) September 2010: On holiday in Corfu. My legs and arms were very ‘violently’ jumpy every evening. My legs were very weak and heavy. Struggled walking distances. Very tired. Very dizzy and disoriented. During this holiday I had 2 very strange episodes where my brain went completely blank. Each time (which lasted seconds) I didn’t know who I was, where I was or what I was doing. One time I was on a step and didn’t know how to move my leg to get off the step or why I needed to get off the step. These 2 episodes were very brief and it wasn’t until later on in the day when I looked back at it did I realise what happened. Struggled walking in sea, very disoriented and dizzy, couldn’t look down at water it just knocked me completely off balance. Back home, legs still heavy, I was still very tired and I had one episode of my legs crumbling underneath me, I fell to floor (I was at home) and both my bowels and bladder opened and emptied completely (I was very near to a toilet and managed to get there just in time) This was quite frightening. Bladder problems: Had a few occasions where after I had been to the toilet, I’d stand up and my legs would be wet. Couldn’t understand why. It got to the point where when going to empty my bladder, I could start having a wee normally, but it would slow down quite dramatically and I would have to ‘push’ the last bit out. Went to Fairfield Hospital and had a ‘flow test’ and bladder and kidney scans. Also has a urethral stretch procedure in Feb 2011. All test were clear. Hospital discharged me. Nov 2010-May 2011: No symptoms May 2011: Heavy weak legs returned, bladder problem returned (mildly). Partial numbness in feet, numbness and p&n’s in little finger (L). p&n’s/numbness in upperback (behind left shoulder) Keep getting pain wrapped around my abdo/middle, quite tight and always happen around the same time every night. I thought it was to do with my food allergies, as most of the time it happened just after I’d eaten my tea. Plus felt it was gastro related. Although some days it began before I ate! July 8th 2011: Weekend in Spain. I felt generally ok, but the heat made me very tired. My legs became a lot more heavy and tired and quite painful to walk. Noticed feet pointed inwards when I walked. (I was born with feet pointing inwards but this was corrected as a child, have never had problems with it since) Jumpy legs became more pronounced. (Home from Spain) Wednesday 13th July: Very tired, legs very jumpy. Felt a sharp painful electric shock feeling in the centre of my lower back. Made me jump quite violently. (1st time this has happened in my back) Throughout the rest of July I had a multitude of symptoms including, dizziness, jumpy legs, tiredness, heavy legs, buzzing feeling throughout body. (mainly legs, sometimes whole body, sometimes face) Co-ordination off balance, electric shock sensations, feeling generally unwell, severe pain around abdo/chest, (usually evening time) Tight band wrapped around my calves, partial numbness and pins & needles in lower legs and/or feet. Towards the end of July most symptoms eased off End of August went on holiday to Lanzarote. Holiday was fine, although very hot, its was very windy which kept me cool. During the day my legs where very tired and struggled walking great distance. Especially struggled walking up and down stairs. Jumpy legs were very pronounced. In the heat I was very dizzy, off balance, stumbled a few times. Tight feeling wrapped around my calves, like very tight socks. Eyes blurry on some days. Whilst walking in shallow sea on beach I was very disoriented, and dizzy, husband had to keep hold of me to save me from falling. Couldn’t look down at water. Bladder problems returned, struggled get last bit out. On a few occasions some escaped without my knowledge! Mainly after standing up from the finishing on the toilet. (Home from holiday 6th September) Legs continued to be heavy, tired, stiff, achy. Very jumpy. Dizzy and off balance, keep stumbling. Co-ordination keeps going. Bladder emptying. Muscle in my left shoulder has become very stiff and painful. Other points: P&N/numbness in left shoulder is always there (probably since May/June this year) Dizziness and stumbling becoming more frequent Jumpy legs more frequent and getting more pronounced (Legs used to twitch and jump out, but more recently they pull up into a tight spasm and hold for a few seconds. (Legs sort of concertina upwards)) Eyes. I have had many episodes of blurry eyes, double vision and pain behind my eye, (mainly right eye) Optician sent my to eye hospital (St Pauls) where they did many test and said my eyes are fine. - In my opinion, my eyes are not fine, they are sometimes blurry, I sometime get mild double vision (slight shadow) and pain. When I am having eye problems I have tested my eye for the colour red (as optician explained) and have noticed a very slight colour change, e.g. red in left eye and a red/orange in right eye. No dramatic colour change. Also my eyes sometimes don’t seem to register what they are looking at for a split second, especially when reading.
I think that all sounds relevant info so definitely show it all to them. Hope you get on ok with your neuro.
Thank you amylou It was a lot to read!! x
Thanks Jen I think I did that last year!! Hopefully I’ll remember to take it with me never mind give it to him!! X
Hi Print your post out and take it with you. I think it is best if you do not say you are on this website cos then they think you are getting info from here. No matter what he says stick to your guns and tell him you know this is not normal for you and you want full investigation I wish I had done that. Jan x
Am I too late? If it’s not too long before you go, then please ignore this! I think it would be helpful if you need to take a separate piece of paper which is organised by symptom rather than by time. This is the sort of thing I would do, but remember this is just me - it is not necessarily right! You know your neurologist. I don’t! Unless otherwise stated, all symptoms have occurred in periods around September 2010 (when I was in Corfu), May 2011 (UK), July 2011 (Spain & UK), end August 2011 (Lanzarote). Some symptoms have improved between these times. Some have remained. Limbs “jerking” / moving / “jumpy” (sometimes violently): Since Lanzarote, my legs are worse. They now “concertina” into my body and freeze for a few seconds. “Blanking out” (2 events, September 2010): I just stopped for a few seconds. I didn’t know who I was, what I was doing, where I was. One fall due to legs giving way, with complete evacuation of bladder and bowel (September 2010). Dizziness / poor balance (leads to stumbles): continues, now more frequent. Weak, heavy legs, unable to walk far: continues. Bladder: unaware that bladder not empty (stand up to find legs wet); flow is weak (requires effort). ‘Flow test’ and bladder and kidney scans done in Feb 2011. All clear. Urethral stretch procedure conducted, but symptoms continue. Vision: short(?) episodes of blurring, double vision and pain. Slight paleness in the colour red in my right eye. I cannot balance when looking at anything moving (e.g. sea water while paddling). Ophthalmology tests were negative, but symptoms continue. Tight feeling around abdomen/chest: May & July 2011. No further episodes since July. Pins & needles / buzzing in upper body (May 2011) and lower body (July 2011) + partial numbness in lower legs & feet (May & July 2011). Pins & needles in left shoulder now constant. Tight bands round calves: May & July 2011. I may have missed things out, so you’d have to check. A couple of things spring to mind reading this. First of all, why is being abroad triggering these? Two main reasons that I can think of: the heat, the flight/travelling. But heat does not trigger relapses in MS. It worsens symptoms. That is an important difference. In MS, when the heat is removed, the symptoms improve. So could it be a coincidence - the attacks just happen to happen when you’re travelling? Or maybe the flight is triggering something? TIA? DVT that leads to TIA? I’m completely speculating here btw - I know next to nothing about TIA! Your vision problems seem to be a bit atypical for MS. Most people with MS-induced vision problems have them pretty solidly for a decent length of time. So they have ON for weeks if not months, for example. Some problems can be brought on with heat or over-exertion, but they would come and go with these triggers, for example, I used to sometimes gets blurred patches when I’d been training but once I cooled down, they went away. Also, having blurred vision, double vision and pain with pale red colour would suggest three different lesion locations. It is not common that people with MS have all three. That doesn’t mean it can’t happen of course! I hope the appointment goes well, and the neuro can shed some light on all you’re having to put up with! Symptoms + no explanation is a horrible place to be Karen x
Thank you for all that Karen, Thats would of been great! I’m going to copy that and add it to my own notes anyway!! So Thank you very much! I’ve just come back from neuro but will write what happened in a new thread. It’s both illuminating and frustrating!!! Thanks again Karen, you are a wonderful person x
Bladder: unaware that bladder not empty (stand up to find legs wet); flow is weak (requires effort). ‘Flow test’ and bladder and kidney scans done in Feb 2011.Your vision problems seem to be a bit atypical for MS. Most people with MS-induced vision problems have them pretty solidly for a decent length of time.
Thanks peter… although this post is 12 months old!!
I have since found out by my neuro, my vision is due to Chronic Migraines. (one of the conditions I now know I have!)
But thank you very much for your response
Jules since your post is a year old I was wondering if you have any answers in the meantime (apart from the vision and migraine). I certainly hope you found some answers in this time and also hope you feel better now.
Best , Caro