My first symptoms were that l feel over while on holiday in the Isle of white.
My first symptom was a weird feeling in my left foot, as though something had stuck to my sole or I wearing yoga socks - the kind with toes. Then weakness down my left side and falls. Then remembered having unexplained falls 6 years ago. Numbness has now spread to both feet and the last two fingers in both hands. I stumble, bump into things and have brain fog and terrible fatigue. I have thyroid eye disease, which causes double vision and blur, so don’t know if those symptoms could also be MS.
Hi,
i was diagnosed with RRMS in 2007. I remeber around 2005/2006 i felt drunk 24/7, left side was getting numb, i also was puking alot for a week (mainly bile as i lost my appetite. Not sure if linked. Soz for mentioning it though). At the time, i was a heavy smoker and badly over weight. I remember thinking i was having a form of a stroke. I was watching an ITV programme called ‘Doctors’, and this man was having the same symptoms as me and then was diagnosed with MS. So in a way, that programme confirmed it to me before Neuro. When i was told by Neuro, it was in a way like the icing on the cake. Finally an answer, an answer i sort of known about 6 months before.
MS has and will always be a challenge, setting a new hurdle when it wants to. Only thing i can do is jump it and hopefully clear it. If i knock it over, continue running and not turn around to see that fallen hurdle.
Life is what you make it, always accept your MS through good and bad times, coz what i learned is that MS has the upper hand, you got to work alongside it and not fight it.
Soz for going on lol.
Stef.C
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Hi. My diagnosis took 22 years to get!
I started with foot drop…falls and loss of mobility within 2/3 years. Spasms, bladder and bowel accidents. But no proof on MRIs, LPs or blood tests.
I did get a wrong diagnosis of HSP…discounted by genetic test.
Nightmare!
I’m not yet diagnosed but strongly suspect I have MS.I first had numbness in my right arm that spread into my shoulder.This quickly subsided so I dismissed it as one of those things.About a month later had a similar experience that started in my back then moved round to my face.Doctor did a blood test and advised low folate was responsible and put me on folic acid tablets.The numbness episodes seemed to subside so I stopped taking the tablets.Two years later and again I have the spells of numbness though not as severe the last one a few days ago in my finger tip.Also I have pins and needles up my legs.Wondering whether to go A&E or contact GP?
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Hi Duffy, Welcome to the community. I would suggest going to your GP, if you have a good doctor who works in the practice, book an appointment make it a double appointment and ask specifically for the doctor you feel, you can really trust to help listen to your problem. Try and do some mindful meditation, you tube is a good resource. This is to help with mindfulness (stress relating to not knowing what is the problem can effect your wellbeing). Before your appointment recall and record everything that you can recall that has happened even before now, sometimes doctors need to connect all the dots to identify the problem (mine dated back to 8 years of symptoms). Be patient and remember we are all here for each other
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I have had similar they take things very slowly… my next appointment is May after my diagnosis… I think they need to put me on DMT’s or something to start slowing down the progression! Maybe I should call and make a fuss…
I’ve had an MRI which showed a small stroke but no signs of MS.However I still have pins and needles and a burning sensation in both legs.Ive been referred to a neurologist but with the Covid situation in the UK I’m guessing this could take a while.Anxiety levels are through the roof and struggling to cope.
Hi, first post here, currently have no diagnosis for any of my symptoms. All started 3 months ago with tingling sensation in upper left back which I put down to back pain, this sensation would almost never go away. Fast forward to 2 weeks ago I developed another buzzing/tingling sensation in my saddle region this too would never go away, I went to GP and referred for MRI.
In the last 2 weeks my symptoms have increased, tingling first spread to my upper right back, then shoulders, then eyelids. In the last few days I have developed a new ‘prickling’ sensation whenever the skin on my chest, stomach, back or upper legs touch something. For example in bed the covers which used to be so comfortable now feel like they are covered in tiny pricks. I have also developed a twitch in my right quad muscle that wont go away in the last 24 hours.
NHS MRI was 5 week wait so I have gone private and have scans in brain and thoracic later today, which I am so so worried for.
I have not had any numbness, balance issues, dizziness, fatigue or vision issues whatsoever.
Each day that goes by my symptoms spread or change and I am absolutely terrified. I don’t know if it is MS or something even worse?
does anyone know anyone with the energy to put the data on this thread into a table? would be fascinating.
Some data here;
interesting
- 52% reported experiencing fatigue before their MS diagnosis. https://n.neurology.org/content/96/15_Supplement/4119
- 63% of people with MS experience fatigue before diagnosis (table 5, Fatigue heralding multiple sclerosis - PubMed)
Hello, I was told I had dropped foot (over the phone) but things got worse and eventually referred to a neurologist who sent me for an MRI.
One sentence but a year of my story! Waiting for MRI results BUT the consultant said “You have MS”
I am 68 and he concluded that when I temporarily lost my sight at 19 that was the start.
So glad I was not diagnosed then and spent almost 50 years in ignorance. Experienced some symptoms that I coped with ~ constipation, bladder weakness, fatigue, weak leg muscles.
WobblyMa
Qu. Stiff and swollen ankle, sore foot OUCH! Normal? Leg twitches wake me.
First of all welcome to the club, secondly the aches and pains are manageable. I am 50 years old. I was diagnosed with MS July 2020 although talking with my neurologist I may have had my first symptoms 8 years previously. I take PREGABLIN 4 x 75mg per day 2 morning 2 night time, for tremors in my left leg, this helps with my aches and pains in my left and right foot, as well as some “weed”, just the odd smoke now and then when my nervous system needs a rest. Leg twitches are a constant bugbear of mine too, not sure what to recommend there, although the “weed” helps this too. Hope this helps.
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Thanks JayJay72 I remember going to my GP and saying ‘I feel so exhausted and weak ~ think I’ve got Parkinson, motor Neuron disease or MS’ He laughed!
Asked me to stroll along the corridor, press on his hands … told me it was anxiety.
If earlier treatment could have slowed things I am not happy about missing out on medication for about 5 years.
Hi WobblyMa, I understand your frustration, but I think you should understand that some symptoms are similar to other conditions, it took 9 years before I had an issue (relapse?), but an mri will only show a lesion once this has occurred.
In my opinion your efforts will be much more rewarding once you get control of your condition. Focus your attention on your health and be mindful of your familys mental health. My family took it badly, my wife especially. So what I am saying is what is more important for you?
I have a daughter who has cerebral palsy, which happened when my wife’s waters broke and an infection reached the embryo. If the doctors at Nottinghams queen’s medical had given my wife penicillin “c” my daughter would have possibly be not disabled. The fact is the doctors gave my wife broad spectrum medication which took longer to deal with the infection. Do I sue? No I am grateful that the doctors did the best for my child. They responded quickly and effectively in my opinion and now they have learnt new diagnosis to check if the embryo has been attacked and what type of treatment they need.
How goes it? Thank you for sharing thoughts and family story, JayJay72
My fella will be with me at MRI results appt May 27th.
I was given Baclofen prescription by Neurologist but haven’t collected it. Baclofen means no evening glass of wine.
I’m coping okay once I get up and move 
The more I move the better: Set my phone timer so I have a little boogie at least hourly!
Trying CBD balm to easy muscle tightness. Not sure I can lay my hands on the real thing.
I’ll report back after the dreaded appointment with truth!
I had bunion surgery i july 2020. Afterwards my foot became numb. On Feb 3 2022 i had a fusion on l4 l5 veterbrae. 2 days later my knee and ankle were in bad pain. Xrays showed nothing. Went home taking neurotin and robaxin. Had physical theraphy. Over a period of 5 months both of my legs are numb and so weak i have to use a cane or walker. I fall down if not careful. It feels like the numbness is traveling up higher. Neurosurgeon did another Mri. He doesnt know what is going on. Has me scheduled for another Mri at another hospital. I can barely do anything with my legs. I am having urinary problems. I just dont know what is happening. I am a 77 year old female who has always been healthly. No diabetes. Help!
Welcome new poster! This is only my second time on the Forum … be careful BEWARE horror stories. Remember everyone’s experience of MS is different.
My legs are stiff (cramp) and painful but improve with movement and massage.
Best wishes. Trish
Bonjour du Vermont,USA,
-Results from lesions read on an initial MRI by a neurologist and my primary care M.D. are in debate.
-Neuro. says lesions not infinitive of MS.
M.D. challenges his diagnosis saying symptoms sound like MS.
-Am waiting for a 2nd MRI appointment.
Just got the first MRI bill paid.
-My question is; is it MS or merely aging? I am 74 years old.
I have intermittent, quirky bowel,urine and balance/falling symptoms. CBD helps with concurrent arthritis.
-No definitive diagnosis yet.
Need input/support.
from Diane Mortier
Welcome, Diane! If the neuro doesn’t think it’s MS, does he have any suggestions as to what caused the lesions?
Not to discourage you, but if it is MS, they’re not going to give you any treatment for it because of your age. In general, MS tends to slow down by 60, and most doctors stop meds no later than 65. Mine was advanced enough that even at 55, my neuro didn’t think they’d help me.
Are you having any numbness or tingling in your limbs or on your body? Looking back, have you had episodes of vertigo or balance/coordination issues?
If you don’t need a firm diagnosis for an increase in benefits, I’d just treat the symptoms you have and let it go. There are many who say that CBD helps with MS, so you’re on the right track!
This is a great place to find information about MS, but keep in mind that it’s based in the UK, so much of what they say doesn’t pertain to us in the US.
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Hi Diane
yes brains do develop lesions with age, which can complicate MS diagnosis. Lumbar punctures the reverse; less likely to test positive with age. Also complicates diagnosis.
The ageing population is causing doctors to review the age profiles of MS, including late onset.
As to whether meds are useful in old age, some research suggests they are not - e.g. Changes in patient-reported outcomes between continuers and discontinuers of disease modifying therapy in patients with multiple sclerosis over age 60 - PubMed and the side effect risks are higher - but the debate is ongoing.
Good luck.