Hey I’m new here! I do not have MS (as it stands) but I have been having some worrying symptoms for a while so today I took the step of actually telling a GP. The GP has asked me to have a blood test next week and go from there.
Obviously whenever I Google my symptoms MS comes up as a main hit. What I wonder is, am I being dramatic thinking these symptoms might be MS?
My symptoms are the following;
-frequent urination - this is nothing new, something I’ve struggled with for over a decade, have learned to live with it.
-struggling to walk due to heavy/stiff legs & pain & weakness like going to fall over - this is new & has happened intermittently. It has worried me as a healthy (???) 34 year old - as it makes me feel like a frail old lady like I’m going to fall over.
-lower back pain when wake up in the morning - struggle to stand up - has been happening intermittently for months
-brain fog - but I have had Covid in the last few months so I am presuming it’s that to be honest.
-new clumsiness - dropping things and smashing them also quite new
-pins and needles / numbness in hands/feet/lips/fingers
And obviously fatigue but I mean who doesn’t have fatigue in this day and age?! So I don’t really worry too much about that.
Intrigued to hear peoples thoughts. My sister thinks I just have chronic fatigue as she has had similar symptoms with leg weakness in the past. But as I had such a bad day yesterday with simply walking I thought maybe enough is enough and I should use the NHS for once.
there are people on this forum more qualified to speak than me but yes! Time to use the NHS for once! The earlier you can get clarity on any form of diagnosis the better…
Hi @Maddy1237. Sounds like you have a lot going on and whilst Dr google has its place, you really do need NHS intervention and support. I’m not currently diagnosed but like you had put up with symptoms far too long. After a productive chat with my doctor I have been referred to a neurologist. See what your blood results say and go from there. Perhaps give some thought to what you would like to happen at your next appointment, if you are not offered a referral. You could ask if your symptoms, as they are worrying you so much, are worth a referral. Keep in touch with us.
Sounds like me I have had symptoms similar back pain hard to get up from chairs etc brain fog forgetting things all the time mine started as a leg tremors I couldn’t walk without them basically flying all over the place I get weak fast always exhausted pains joint pains had an MRI on my spine was normal…bloods normal…I have neuropathy from my Type 1 diabetes so masked most things I got told it’s not just that and I’m waiting for answers I’m buying a walking aid now I can’t walk without pains or balance problems hope you find out what’s going on because sometimes doctors and appointments don’t yeald answers
I couldn’t remember if I did a post last year but turns out I did as found some login details! Just an update, blood test after I saw a GP last year found an iron deficiency and the MS type symptoms went away for around 4-6 months. They recently came back and have been happening for the last few months. Have gradually got worse. Some of my symptoms now are-
-Leg weakness / difficult to press pedals in car
-Hand and feet tingling / numbness
-Hand weakness - difficult to use hands at work (keyboard / mouse etc)
-My hands shake constantly. All day…
I went back to the doctors and the doctor told me I have symptoms of MS (I didn’t mention what I thought was wrong with me because wanted the doctors true opinion) and she has referred me to neurology.
I cried with relief when I found out I was being referred to neurology. I’ve had these symptoms intermittently for over a year now and just feels like each time it happens it’s worse and felt so frustrated like there’s nothing I can do. It affects my ability to work / do anything and I’m just so relieved it’s finally being looked into.
If I remember that this thread even exists I’ll try and remember to update what happens when I’ve been to neurology. But with NHS wait times could easily be another year or so that this goes on for.
How did people cope pre diagnosis? Waiting for referrals etc. whether it’s MS or not… I’m finding it tough waiting because there’s something wrong with me, I don’t know what it is, I don’t know whether they’ll find whatever it is or whether I’ll be stuck like this forever. How did you deal with these emotions whilst waiting for some kind of diagnosis?
You sound a lot like me
I’ve a painful stiff lower back especially after being in bed and sitting. Stiff knees and weird heavy legs, difficulty with stairs. Ive numb legs, worsening hand grip I tend to fumble and drop things, terrible brain fog, exhausted, bone pain alsoets going on been coming and going for decades. Like you I never really mentioned it toy gp till 3 years ago when I’d just had enough and it seemed to be escalating. Dozens of blood tests later that showed nothing, numerous mris which did show white spots on my brain, I’m currently waiting for the latest nuro Dr to re examine all the scans. It’s a long process and I’m like you fed up. The gp did make me feel like I was making things up but luckily the nuro Dr listened did some other tests, and says somethings not right.
Just an update on my post as it’s been a while. I was referred to a neurologist eventually and seen by her in November. She said that she doesn’t think I have any type of demyelinating disease and that I am probably b12 or iron deficient due to being vegan. So she ordered a blood test, which came back all fine! This worried me as she seemed so sure something would come up in my blood. So was back to square one and referred for an MRI.
So I had an MRI yesterday on only my brain, not spine as well which worries me a bit as read online it’s best for them to check both for any signs of demyelinating disease. So now I await the MRI results… such a long road since early 2022 and still no answers.
I’m not an expert either as I’m about at the stage you are (MRI is next week, neurology appt was just before Xmas).
But just to say - your comment re. bothering the NHS 100% resonated. For years, my symptoms were so random and seemingly unconnected (weird aching that came and went, headaches, strange skin sensations, sometimes needing to wee loads, at other times not able to at all!) that I never bothered mentioning it to a GP.
I still felt silly bringing it up with the GP in June when my foot went completely numb. However, my symptoms really worsened from October to dec, so I’m glad I did. Hope your MRI offers some sort of clarity on what’s going on for you.
I’d love it if someone can give Maddy some up to date info. I was first diagnosed in 1991 and then went into remission till 2019 so I was very lucky indeed. At the time, regardless of MRI result, the only thing that seemed to confirm an MS diagnosis was a Lumbar Puncture where they are looking for oligoclonal banding (see Oligoclonal band - Wikipedia)
I also just had a brain MRI (not spine) but they did find lesions/evidence of inflammation and used the LP to confirm the diagnosis.
You ask how to handle things pre-diagnosis. It is very stressful not knowing as human beings don’t handle uncertainty well. Something to focus on is just making sure you have a good (Mediterranean style) diet and avoid things that will encourage inflammation (e.g. refined sugars). Just look after yourself as much as you can.
If you are struggling with your walking, gym-work that focuses on strengthening the glutes is good as this increases stability.
also quite new