Symptoms before diagnosis

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Patients Multiple sclerosis

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• Community manager
Posted on
Good advisor

A lot of people talk about being sure they had this condition way back before their diagnosis. Which are the symptoms you experienced before you were diagnosed? 

Thanks for sharing! Remember that sharing helps everyone to cope and prevent :) 

Best,

Gilda 

Beginning of the discussion - 30/04/2016

Symptoms before diagnosis


Posted on
Good advisor

Sorry for "commenting" so late on this subject - only just found it!!  Apart from almost 2 years with Trigeminal neuralgia, including a period of time where my colour vision greatly faded (unfortunately, during this time, I painted my bedroom, changed the carpeting in this room as well as the living room and ordered a new 3 piece suite)....... but by the time the suite arrived, my colour vision suddenly returned and needless to say, was rather shocked by my new carpet colours and painted walls etc because they were so "vivid" and didn't really come close to matching!!!!!  I also intermittently experienced an inability to sometimes flex or bend a knee (this happened at different times with either knee), which resulted in me either not being able to walk when 1 knee refused to straighten and when 1 of my knees would not flex, had to walk with it at a rather odd angle and totally straight.  I also experienced times of utter fatigue (thought I had just become lazy) and times when I just couldn't concentrate, focus or process any information (began to think  I had either suddenly developed a learning difficulty or in the early stages of some kind of dementia).  All of these symptoms were years before my MS became obvious and eventually diagnosed.  

Symptoms before diagnosis


Posted on

Hello, I've recently just found out I've got MS and have done for the past ten years apparently! I've always had symptoms, I was always told my doctor, hospital etc that it was growing pains or something I had ate! I've always got numb legs and pins and needles for as long as I can remember, they thought it was poor circlatuon etc, but it never went away. Then three years ago I had a numb right side of the face and nearly lost my vision in my right eye, of course they put it down to something I had ate lol?! I also have really tired days, where I could get In from work and sleep right through till I'd have to get up for work the next day, and at night mainly or when I'm tired I go all dizzy and unbalanced. It's just always happened its weird to notice how often now! but a few weeks ago I went numb on the whole right side of my body but left side of my face? I lost all sense of taste and constantly had pins and needles and uncomfortable feeling in my right side of body, then I went private after nhs told me it was vertigo? It was only after I had an mri scan it showed all! But I've always had numbness (legs mainly) and pins and needles, now I know what it actually is I realise how often it actually happens! Hope this helps anyone! 

Angelina xx

Symptoms before diagnosis


Posted on

I got diagnosed 18months ago but can trace symptoms back 10 years at least. My Dad was killed in a road accident in 2015, in the 4 weeks after I fell twice, I had horrible trijeminal neuralgia & when tired had a slight limp. I was very obese & everyone including myself blamed my weight issue for my symptoms. 

i steadily got worse over the years but 4 years ago I had 4 really bad falls in 10 days & went back to my doc who sent me to a neurologist. He did an MRI & said there was nothing wrong with me. By now I was limping badly, my left leg was giving way & I had no energy. 2 years later I went back to my doctor & she referred me to a different neurologist and he listened to me! i could tell he knew what was wrong.... He ordered mr brain & spine, lumbar puncture & evoked potentials but he already knew before he got any results. 

Gettig diagnosed was in hindsight the best thing ever. I'm on Gilenya, I tried steroids to reverse symptoms but that went badly because I'm also diabetic. I was referred to an endocrinologist who started me on a weight loss programme and I lost 56lbs. I joined a rehab program & I am so pleased & proud of my results. I hadn't been able to exercise in about 25 years but now I can swim 12 lengths of the 18meter pool 3 or 4 times a week, I do a 15 minute power walk 2 or 3 days per week. 

Apologies for being so long winded & wishing you all well. 

Symptoms before diagnosis


Posted on

I had no idea what I had but my first symptom was my left arm and leg going crazy and flying around by themselves for about 30 seconds up to 13 times a day. My second was going blind in the left eye for 2 weeks. That was quite scary when you have no idea what is happening or why so was relieved to get the diagnosis!

Symptoms before diagnosis

• Community manager
Posted on
Good advisor

Thanks everyone for sharing!

don't hesitate to let others know how you came to be diagnosed!

Symptoms before diagnosis


Posted on

Hi, I had breast cancer in 2010 and the chemo was to blame for all my symptoms (peripheral Neuropathy) but over the years the bottom of my spine and legs have gotten worse I'm in so much pain 24/7 and have pins and needles and numbness in my feet, legs, hands and arms. I saw my Doctor a few weeks ago as it has all accelerated so she sent me for a brain MRI I am still waiting for the results but I'm hoping they do find something so it can be treated properly as the pain is just unbearable and draining. I know it sounds bad but I'm hoping something IS wrong coz I'm just at the end of my tether!

Thanks for reading. 

Julie x

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