Hi all, I’m not sure which online community chat I should go and if I’m doing this properly but since I’m waiting on MRI results for over 4 weeks to rule out MS etc I’ve chosen this one. I’m not sure exactly when my first ‘ms type symptoms’ appeared as since my late teens I’ve had episodes of fatigue, back & leg pain, odd sensations, brain fog, tremor all of which has left me bed bound for a few days at its worst. My Gp’s and myself have thought this was due to anxiety and depression. There was probably other symptoms too but I cannot remember right now. Then when I was 23 yo I had a problem with blurred vision, leg pain and fatigue. More recently (3 years plus) and worsening over the last 1 year I have bilateral tinnitus (one ear usually worse), full feeling in ears, dizziness, nausea and sometimes episodes of vomiting and vertigo, as well as feeling drunk. This worsens with activity - I had to stop jogging but I’m dizzy even lying/sitting down too. I still have blurred vision and patchy slightly darkened areas which affects my vision. I wake up and have done every day for 1 year plus at my worse, absolutely exhausted like I’ve not slept. This is combined with pain, particularly in my back, legs, knees, neck, hands, fingers and feet - these are the areas I also experience odd sensations - like pins and needles, creepy crawly itching, buzzing, burning, coldness, numbness and deep aching . Numbness I feel in parts of my face too and middle area of my body can feel like it’s being tightly squeezed. I also experience brain fog, slight bowel and bladder issues. As a result of symptoms my walking has been affected - I used to jog 50 mins, now walking 5 mins my legs hurt and I’m so exhausted I need to rest. My steps are strangely uncoordinated and very odd and due to the dizziness and visual issues I look drunk. I find small tasks like buttoning a shirt, reading and using a PC challenging. I’ve not really had much of a break from these symptoms for 1 year. I remember when they first got this bad I was saying to my GP I feel like I’ve always got the flu. I’ve been referred to ENT, ophthalmology, mental health, dietician etc and recently neurology and awaiting MRI results. On my first visit to the neurologist he really just noted that I was dizzy. He spoke about MS, FND and the problem with incidental findings. My GP thinks with MS all these symptoms presenting is not typical of MS but more with anxiety. I’ve been taking beta blockers to help with anxiety for ages but my symptoms aren’t improving. In actual fact im too exhausted to feel anxious! I don’t feel too anxious. I have told my GP on several occasions I think my symptoms cause anxiety and low mood, not as much the other way around. However, it’s not impossible this is all anxiety and at least after years of complaining to GP’s my symptoms are being investigated. Can I ask you all - does anyone have symptoms that worsen and come and go like pins and needles, spasms, visual issues and other symptoms which don’t go away like pain and fatigue? I hope this isn’t too long and it makes sense. Thanks for reading
’Can I ask you all - does anyone have symptoms that worsen and come and go like pins and needles, spasms, visual issues and other symptoms which don’t go away like pain and fatigue?'
to answer the question highlighted - yes, many of my symptoms like yours come and go, pain and fatigue are ever present. Although my pain and fatigue levels vary too. I was dx with RRMS in 2015.
I think your GP should have referred you far earlier than he/she did, but now you have had an MRI you should start to get answers. Was it a full brain and spine MRI?
The results may well take weeks yet, then you’ll get a letter with an appointment where they’ll tell you the result. You could find out who the consultant will be and pester his/her secretary. You can get the contact number from the NHS Choices website.
It certainly sounds like you’ve had a miserable time with the symptoms you’ve told us about.
It’s not really possible to say whether people with MS have had certain symptoms that have matched any of yours. One problem is that to some extent everyone’s MS is different. Another is that while lots of the symptoms you’ve detailed (maybe even all of them) could fit with an MS diagnosis, they would probably also fit an FND diagnosis. Or something quite different.
Unfortunately, I think you will just have to wait for your next appointment with the neurologist. At that point you’ll get the results from your MRI scan and either be referred for more tests or told that the MRI doesn’t fit with a diagnosis of MS. There is a small chance of being given an MS diagnosis at that appointment, but I think there is a greater chance of not being told that. The neurologist might also think it’s likely to be another problem altogether. So, not MS, not FND but maybe something you’d not even considered (I have no idea what, I’m just putting it forward as a possibility).
How long have you been waiting for your MRI results? If it’s been very recent, then I’d expect you to get a letter with an appointment hopefully soon (the timescale will depend on local issues). If your MRI was several weeks ago, then in your position it’s a good idea to try to find out when your appointment will be. So, you could phone the hospitals appointments team and ask them, if that doesn’t get you anywhere, then try the neurologists secretary. Ultimately, you could get your GP to try to find out.
I do hope you get some answers soon. It seems like you’ve had a very long and difficult few years. And it’s about time you got an answer to what is the cause of your health problems.
Hi Suzy, I too am in the same boat as you, although I have my MRI results! our symptoms are extremely similar, my first MRI was on my brain and neck only and showed some white matter lesions on my brain which could be demylinating and my spine mri showed no abnormality! Have you been referred to a MS Nurse? I have and am awaiting an appointment but my neuro has said she just wants the opinion of the ms nurse. My symptoms also come and go and are worse at times, and there are symptoms like aching and fatigue that are always there just at different severities. The symptoms that bother me the most are the cognitive symptoms, at times I can not function at all, do you have problems with this? xx
I’m also in limbo. Will hopefully get my MRI & thyroid ultrasound results on Thursday.
Fatigue has has pretty much returned to normal level after my episodes this spring. Tingling in hands is fairly contant, I just think I feel it worse when in bed trying to sleep. Tingling in feet is almost gone - it comes back when they get cold, which they do easily if I don’t keep socks on My hands spasming is new in the last 2 weeks
Eye pain is pretty much gone My right eye socket still aches if I get over tired though My prescription has changed drastically in that eye I have a feeling that’s permanent
Cognitive issues & short term memory are shot still