Hi, I’m new on here and not exactly sure how to post this but here goes. I have been suffering for well over 2 years with weird sensations and countless symptoms that led me to see a neurologist this week. He was brilliant and very thorough and I had a brain mri the same day. Should mention I am a 53 year old active female.
My symptoms include: pins and needles began in my left heel and progressed over many months and are now up to my knee and in the sole of my right foot. Both calves feel as if they have disappeared. Tripping up over my feet for no reason, unsteady gait and foot drop in my left foot. I’m a bit of a runner ( 3x a week I do 4-5 miles) my running style has changed completely and as I tire my left leg gets heavier and I need to consciously be aware to lift but it’s not a pretty run lol.
Other strange symptoms include: electric shock sensations down into my shoulder and sometimes when bending my neck they shoot down my spine and into legs and as far as my heels. Cognitive problems and affecting my busy workload when typing I make mistakes and my hands don’t work as they did. I’m just not me anymore. My memory is getting awful and at times I seem to find it difficult to get the right words out. My skin on my fingers feels less sensitive almost like I’m wearing gloves when I touch my phone for instance. My left eye lid twitches for most of the time I am awake. Bladder issues for which I use Oxybutin patches for and it helps slightly.
Im sorry if this sounds as if I am moaning, it does make dreadful reading but I am trying to give as much information as possible that may resonate with others.
On examination my consultant said my left side appears weaker, my neurological exam was wobbly but I’m sure some people are worse. He said that it looked like MS on my visit going by my history and symptoms but let’s get the mri done and I’ve a nerve conduction study booked in 2 weeks too. I’m fortunate enough to have private health insurance. My neurologist rang tonight to say that there are 2 white dots in the frontal lobe but radiologist did not say inconclusive for MS. My doctor said he’s only seen the report and is going to view the scan himself.
I think I just want to ask if anyone has frontal lobe dots and was it MS. My doctor wants to run bloods now too.
Oh, I’m on vit b12 injections and Vit D for osteoporosis. Thank you for reading my moaning tale.
Hi there sorry you have been feeling rubbish. I’m new on here aswell. I’m 29 and I have been experiencing weird things past two months ranging from double vision to optic nephritis to my right lower sode down through my leg sensation not feeling hot or cold feeling tingly. Aching like crazy sore all over head pressure really bad.also iv started getting this weird vibration lower back pelvic area not painful but not nice. Really fatigue. Feels like I’m fighting something off constantly. I was put on steriods which helped my vision I think .I didon’t get worse got abit bettwr but still unwell. I had a mri which showed deymylinaton in brain around the nerves I don’t know much else about it yet just that they think it could be ms.I’m waiting to see a neorolagist which takes time. I just really want that appointment sp I get answers and treatment so I feel better. It all happening so fast fpr me . But once get a diagnosis and treatment plan things will hopefully look up. And not to stress is important at the beginning I was the most stressed ever I expected the worst I really thought I was dying . Thw eye consultant said no your not dying but there’s abit of deymylinaton and I need to wait for referral and Try look after myself and limit stress as that brings it on, easier said thwn done :-/ I hope someone on here can be more help, and that you get the treatment soon xxx
Hi ive waited 6 months and finally got app neurologist monday coming. Doc referred me as said i have signs of ms . Feel in pain with legs …heavy alk time one of my toes underneath side totally dead n numb . My balance is shite too… vision got worse . Tiredness is awful… u get up for work ev morn n im already thinking of cant wait til bedtime . Im now restless and cant sleep as in pain laid here … im on co codomols have been for 5 yrs now Keep me updated on u lovely people on here. Im new to this as of just now xx
Welcome to the forum, sorry you’ve had to find your way here.
Basically Jenny, anything one of us says about your symptoms or MRI scan is a bit pointless because we just don’t know. As Carole said, you will be waiting for the appointment with your neurologist to find out the answers. With luck you will get a definite diagnosis at that appointment. It’s so hard waiting for results that are so meaningful, if possible, try not to worry, what will be cannot be altered. Hopefully the next step will be very soon.
Charallen, you’ve been doing a sterling job of coming on here and empathising with people, all while waiting for your own diagnosis. You are absolutely right, stress is the enemy, I do hope your neurology appointment comes very soon and you get that all important definitive diagnosis that will mean you can start on a disease modifying drug.
And Lorns, I’m glad your first appointment is on Monday, what you will be expecting at that appointment is the doctor to go through what’s been happening to you and when. It can be very helpful to have written down your symptoms, when things occurred, how long they’ve lasted and whether any symptoms have hung about or have got wholly or partially better, a kind of time line. The doctor should give you a neurological examination, testing reflexes, eye movement, various odd things, you might be asked to stand on one leg, perhaps with your eyes shut, that kind of oddness. If the neurologist thinks it’s warranted, s/he will refer you for tests, an MRI maybe or other tests as are relevant. It helps if you can take someone with you to the appointment. That way they can help you remember all that’s said. Otherwise everything just flies in and out of your brain.
Best of luck to you all, I hope your various appointments are useful and that you get answers to your symptoms very soon.
Hi everyone iv got my first neurologist appointment on the 29th of this month . Finally I might get proper answers and a treatment plan. It’s been so tough thw past 2 months x
Yes hopefully. I think one of thw worse things is not understanding whats going on or having any sort of treatment plan . But I will keep writting on here when I know anything and hopefully it will help others xx
Having high para thyroid hormone can cause neurological symptoms and osteoporosis. But then again so can having low b12 . I’m going to get tested for the PTH soon .
I think o had bloods to check my thyroid amd they checked my b12 back in October :-/. Had a few other bloods at hospital but don’t know what they were for x
Hi, well here I am again almost two years later and still no closer to any answers. I’ve had two more mri, larger than usual lesions frontal ones (too large to be age related due to size) I’m now 55. I’ve had borderline, upper range but normal visual evoked potentials, normal LP, and lesions on basal ganglia and central semiovale bilateral lesions. My neurologist one minute thinks it’s functional then when in experienced eye blurring he said oh it’s not functional possibly??
so off I go for another mri Aug 2020 and it’s basically the same as the one Jan 2020.
then COVID-19 hits the planet and no more face to face visits even privately. I hadn’t had a basic neurological exam in a year and I’ve deteriorated a lot. I am fit and active and can run 15 miles a week, that has changed drastically. I’m able to run 3 miles now and suffer for days afterwards. New bigger symptoms have presented. I have flashes of heat up and down my left leg, my left side has always been the main problem. My foot burns for 30 seconds then fades, my knees feel numb to the touch periodically and my left ear doesn’t hear as well. My grip with hands has weakened.
As I previously mentioned I am so fortunate to have insurance and I rang a private GP who said I should contact my local GP for a neuro exam. I did and she was brilliant, she asked my to go straight in. I was totally gobsmacked when I wasn’t able to do the nose/finger test with my left hand. I was well off the mark.
so I’m going next week to see a new neurologist and I think I’m just afraid that he might not be able to help me either. It’s really starting to affect my mental health now, I work for NHS and on a COVID ward so I’m also worried incase my immune system could be compromised. I feel like I’ve been left on the ‘maybe’ shelf and that’s not acceptable. Any advice before my visit would be much appreciated. Oh also I should add that after sitting for a period even if it’s just an hour I am like the tin man when I stand, I’m having spasms and tremors in my legs also. Thanks in advance x
Hi Jenny, hopefully the next neuro will be more positive about what`s going on.
Working on a covid ward must be very worrying for you. Ask the neuro if he feels you need to ask to be transferred to a different post in the hospital.