Just wondering, what was your first relapse/attack and how long did it take you to recover from it?
Technically my first recorded attack was double vision. I think all in all it lasted 3 months. I woke up one morning and I had it and then 3 months later woke up and it was gone, very strange. Was to do with a muscle cluster for my left eye not working properly.
Hopefully this helps
Hi, My first major attack (when i knew something wasnt right was june) My left leg began to tremor and become very weak to the point when I was walking I had to drag my leg or stop walking. I still havent fully recovered as still can only walk a short distance then my leg decides to play tricks on me. Everyones body is affected in different ways and recovery times can vary too just because its taking me a long time to recover doesnt mean you will be the same. Hope your keeping well. Polly
Mine started in August with pins and needles in my hand and foot and progressed to the whole of my left side (numbness etc) when I was hospitalised. It then went to my right side. I am still off work sick with the symptoms but my left side is recovered now apart from my toes, ear and hand (which is not good). I am hoping my right side will do the same in time. I also had a blood clot, double vision, fatigue and balance problems, such fun!
Mine really started with a fall last December and as the neuro put it, MS “kind of crept up on me” and I guess that’s why my diagnosis is likely PPMS as whilst little bits have improved, overall I’m not better.
Realistically, I remember having a problem walking in flip-flops (I randomly send one flying every now and then) for a few years now so I think I know the answer already
I was the same Sonia I noticed it earlier when I tried to wear shoes at a wedding, they werent that high but I felt unbalanced and shakey but I overlooked it. So when I was diagnosed everything started to make more sense about why I wasnt able to do the simpliest of things. Polly x
Vertigo /headache. 3 months. CIS Optic neuritis 3 months. Diagnosis. Transverse myelitis straight into optic neuritis - currently.
Th thing I find most ridiculous is that I would don a pair of 6 inch heels quite happily, my part-time job was as a pole dance instructor. I was still teaching in March and diagnosed in April
Admittedly, my warm-ups by that point, involved instructing whilst doing squats as I could not physically complete an aerobic warm-up without tripping over! I could still deadlift my own body weight tho… all a different story now especially since Baclofen invaded my life But still a pole in dining room, a “lazy walk” is second nature now that I can’t make my right foot pick itself up LOL
Pins and needles in L side of lip and chin progressed to L arm and leg with mild weakness and bowel and bladder issues. I recovered fully from this episode but it took me a whole year in which I had 2 other episodes (? trigeminal neuralgia / hug). Thankfully was never incontinent though if I was having to go somewhere planning pee stops was v important. I worked through the whole time.
December 2008, woke one morning with a lisp and couldn’t write properly. Within 2 weeks had slurred speech like I was drunk and writing was illegible. Admitted to hospital via A&E as hospital sent me a neuro appointment for a month away instead of urgent MRI requested by my GP.
Had MRI and LP day before Christmas Eve and diagnosed with CIS and discharged on Christmas Eve with headache from hell. By then my speech was beginning to improve slowly so no need for steroids. I think I was almost back to normal within a month from first symptoms although there are some words that still trip me up if I am tired.
April 2012 had a foot drop…started with my flip flops falling off my feet then walking funny then complete paralysis of my right foot couldn’t move my toes at all or lift my foot kept falling over it was awful after MRI on my lower back to rule out disc problems sent to neurologist had another MRI which showed lesions on brain and spine so was diagnosed with a cis but started on avonex as was high risk of developing ms which now has happened as I’m just recovering from a bout of ON (which i also had about 3 yrs prior to the drop foot but at the time didnt know what it was didn’t go to docs as just thought my eyes were playing up and needed them checked but if resolved before I did so this went undiagnosed) awaiting to see neurologist to get my yearly review as my diagnoses of cis will now be rrms! my leg is a lot better and my eye improving too but still have residual damage which makes my gait all over the place at times!..Emma x
For me it’s hard to really pin point cause I put it off for so long. I kept thinking it was to do with the job I was doing. I was doing a 12 hour day with travel involved and it was all pretty much on my feet. I noticed odd tingling in my feet and hands when I got really warm in 2009. Then the heatwave the year later I was so ill, I couldn’t stand the heat. I got a bit better and then I started to get worse this August. Now I’ve got tingling in my hands, feet and legs. I get tremors in my hands, arms and legs. Cognitive impairment (concentration isn’t too good and finding words can be difficult- thinking I’ve said things when I haven’t). Chronic fatigue. Vertigo and now numbness in my thighs. I haven’t been diagnosed with anything yet, so what’s to say I haven’t had an attack before and just put it down to stress. Hopefully I’ll find out answers at my appointment soon. xxx
I think my first symptom was my eye sight approx 3 years ago. I lost peripheral vision on both eyes but it only lasted about half a day and there was no pain. I went to an optician to be told it was probably a ‘visual migraine’. In April 2012 I started having mild tingling sensations in both legs, I ignored it and it went away after about two months so didn’t think much of it. I then lost my eye sight again in September 2012, but, it was the same as the last time so I thought it was another visual migraine. In March 2013 my tingling symptoms came back but much more severe so I went to my GP. Since then my symptoms have gradually got worse affecting my face, hands, feet and balance.
My first symptom I think was burning pain thought I was getting shingles. I am undiagnosed at present Axx
undiagnosed at present but my journey started about 4 years ago when I had my first visit from l’hermittes, this lasted for about 4 months but was dismissed by my doctor as being degenaration of a disk in spine. Then fast forward two years and I had issues trying to pee (sorry forgot medical term!) then 5 months ago I woke up to a very numb arm and hand which lasted for about 4 months. (still feels numbish now, once in a while)
In the last 4 months I have had blurred vision in my left eye, bouts of pain in my eye, which felt like my eyeball was being ripped out backwards, numbness to my cheek, right leg is suffering from really tight muscles and have had issues with my bowel. Oh yes and my leg is currently really weak and I am unable to tense my hamstring at present.
My neuro sort of dismisses my leg and hasn’t commented on the other issues but has labelled me as having “likely” ms after finally seeing my MRI. However, I still haven’t had anyone discuss mt MRI fully with me.
May sound an odd answer, but I honestly don’t know. I know about the episode that led to my diagnosis, which took nearly a year to recover from, and I never quite returned to the strength and stamina I’d had before. BUT, looking back, I think there had been multiple health issues and incidents, stretching back several years, that I now believe were MS-related. Some of them I had put down to injuries, even though it was always a bit of a mystery how I came to be injured. Other times I’d blamed a bug, or work stress, or hormones, or sleeping awkwardly, or you-name-it. They were mostly quite minor in themselves, so either I didn’t go to the doctor’s, or occasionally I did, but never really got to the bottom of it. So it’s difficult to say when things first began. I wasn’t diagnosed 'til 44, but can recall odd incidents even as long ago as my 20s, that might have had something to do with it. For example, I remember coming back on the bus from somewhere, and suddenly feeling my head was massively too heavy for my neck, and I was having to prop it up with my hands under my chin. I never found out what this was, but it sorted itself out after a day or two, so I put it down to a pulled muscle, and never sought medical advice. I now wonder if that was an early episode. Tina
Think for me it was the numbness in both my feet and right upbthe left side of my body.
Mine was last July. I woke to find my right hip really sore like sunburn on my skin. A couple of days later I went to get out of bed to find I was dragging my right foot by then I had no pain. Within 24 hours my whole right leg was as as stiff as a board, I couldn’t bend it at all and it was near impossoble to walk. It felt like it weighed a tonne! My gp sent me to a&e with a suspected spinal prolapse or stroke. I was admitted for the night. These were ruled out. I was discharged the following day on crutches to await an mri 3 weeks later. The rest is history! Leg and foot recovered after 6 weeks with no treatment. Was officially diagnosed in January this year. Am on rebif, started May, both feet are tight and my shoes feel like they are full of sand. Have spasms now and then but can’t complain xx
My CIS started in Jan this year. 3 weeks of continuous dizziness then followed by 30 days of continuos horizontal double vision (by the time I swallowed my first steriod tablet.) Shame the GP didn’t refer me as urgent on the day of onset of double vision. I’ve been told by a doctor that an immediate diagnosis then given steriods would have arrested the disease progressing (remittance). Thats what you get for going to a clueless inexperinced GP (sorry for the rant).
Have multiple lesions in brain and spine. I aways walked everywhere so ‘possible MS’ is a complete shock to me. I’ve had sleep apnea occasionaly before this CIS but not had many health issues before. I’m in month 10 now and the tingling spine is starting to fade now and my eyes recovered in April. Have a few spasms a day in bed some days. Got my follow up with neuro next Wed. Good luck xx