First of all i’m new here, 32 years old and not from the UK, so excuse me if my English is not is not perfect. Just to clarify; i’m not diagnosed (yet?) although i’m currently in limboland with the feeling not being taken serious by the first neurologist i have seen.
i will try to give a brief description of the symptoms i have been facing the last year;
from summer 2021 onwards; fatique, heavy legs and arms (all of them), and blurred vision in both eyes, making me move closer and closer to the laptop at work and weak muscles after physical effort, for example, after 20 minutes of working in the garden it gets hard to raise a coffee cup. Also my cognitive functions seem to suffer, lack of concentration and difficulties with following conversations if multiple people are in one room.
While on sick leave the symptoms got worse:
for 3 months now; pain in left shin/ankle/top of foot and outer toes
for 3 months now; Left leg seems to be a bit weaker, so with the existing complaint of heavy legs (limits me to a 1.5 mile walk) the left one seems to have lost some strength
for 2.5 months now; however most of the eyesight problems where corrected with a glasses, i develop an painfull left eye. Also my left eye lid is something shaky/twitching.
for 1.5 months now; Painfull left buttock, mainly after physical effort (walking), there is also a small spot where in my mind the skin appears to be cold, although the actual skin temperature is quite normal
For 1 month now; Titinus left ear, gets worse when the head is turned towards the outer extremes (left right)
I went to see a neurologist a couple of months ago, who agreed on a MRI of the head and one focused on the eyes (ON) which came back totally fine, (“No signs of any lesions, no deviations found on nervus opticus”) which basically means good news.
However… the MRI scan has been made when the pain in the left buttock and the titinus in the left ear where not present yet, unfortunately i guess the Neurologist had a really bad day because he wanted to close the case with the outcome of the MRI of head/eyes and did not want to answer addition questions/help me understanding where those problems are coming from.
the question;
Does it make sense to ask for second opinions? or makes a clean MRI of head/eyes combined with the symptoms described above it hard to believe they find something?
one thing to mention is that i had a really hard time before/when the symptoms developed, including loss of several family members and some serious problems within our own household, although i find the symptoms rather extreme for being fully caused by stress.
Hi @NewHere, sorry that you are feeling so unwell. I am no expert on ms but what I do know is this… ms isn’t an illness that generally can be diagnosed without ongoing symptoms and results of a number of tests.
You say that your symptoms only started in 2021, so early on from the start of symptoms may just be too soon to say with any certainty that you have ms (yes there will be some exceptions). It might be that you are at the start of the journey, and only time will tell.
There are other illnesses that without evidence of lesions on an MRI might be that you are suffering from… B12 deficiency, fibromyalgia. In the first instance I think you need to go back to your doctor and ask what if not ms for now you might be suffering from.
Have you had any blood tests, or other tests apart from an MRI?
I would be inclined to step back for a little while. There’s a saying: Dr Time is the best diagnostician. I think there is a lot of truth in that, particularly when imaging is not showing up anything of significance.
If there’s something serious the matter with you, it will most likely present itself in time in a form that is more easily identified by your medical advisors. If investigations so far revealed nothing particularly alarming, then I would suggest that you leave it there for now. You will have a much easier job with the medics if you have something new to report to them.
Hi,
Your English is far better than many English people I know! In your position and with my experiences I would politely push for a lumbar puncture, the spinal fluid can reveal tiny traces of evidence which can sometimes help with diagnosis. If getting a firm diagnosis of whatever is going on means that you 1: know what you are dealing with 2: can look for early therapeutic help to prevent or slow or reduce damage. All the best Mick
@Rogue, thanks for the reply, yes i had a couple of blood tests (including B12), seen other specialist (Gastro-enterologist, ENT specialist etc.), all without remarks. I’m starting to worry because i only have symptoms (fatique/heavy legs) since one year and it’s already causing me to be at home from work and got worse in the meantime;pain in left ankle/buttock and tinnitus, getting harder to walk more than 1.5mile. IF it is MS, i guess this leans more towards a PPMS way of progression? although it’s quite fast if you ask me
@alison100 I tried that, but i’m simply unable to work due to the fatigue and other problems. That makes it hard to step back, especially i’m only in my early 30’s. Don’t get me wrong, i do not necessarily want to be diagnosed with MS, I just want to understand what is happening with my body.
@Mogace will try to push for a lumbar puncture, maybe even a MRI of the spline since i only had one of my head/eyes.
Some additional questions;
With MRI proving that there is no sign of ON (Nervus opticus looks OK) and no lesions on the brain MRI, is it still possible MS is causing eye problems?(blurry when fatigued/including pain)
Could problems described above be due to anxiety/stress? i find it quite hard to believe anxiety or stress is causing nerve pain and extreme fatique
I’m no Doctor but if all these things have happened in the last 3 months, it is possible that the onset is too aggressive for MS.
Have your Doctors ruled out a stroke?
If NEIDA (no evident inflammatory disease activity), normally there would be some older lesions.
Have you had any symptoms or isolated episodes longer ago that 3 months?
I agree that a lumbar puncture would provide corroboration (or otherwise) that symptoms equate to MS.
Fingers crossed that you get a good outcome.
Graeme
It started with some fatique after a really stressfull period last summer. Then the last 3 months i developed some other “MS like” symptoms like pain in the left shin/ankle/eye and buttock.
I know what you mean. It’s the not knowing that is so destructive. It’s perverse but finding out that you have “a something” at least gives you something to focus on, however horrible. And ideally, a treatment plan that would follow.
