I had a head MRI for something unrelated and they picked up suspicions of MS. I have not seen a neurologist yet but was cc’ed in on the letter from ENT to neurology. This is the suspicious part…
‘Incidental finding of small white matter signal changes with periventricular and juxtacortical distribution with suspected perivenular changes as well as white matter signal changes in the right cerebellum and in the upper cervical spine cord. ‘
Unfortunately I don’t have a appointment until 01/10. I know from research these areas are MS hot spots, maybe not on their own but all together it definitely points towards MS. I know diagnosis is complex and I have no idea how big they
are or what the T1 image looks like, I will need blood tests and possibly a spinal tap. But it’s very frustrating that those images are just sitting there on a computer and nobody will be looking at them for a couple of months.
Anyway that is the reality of where things are. All I can do is be really healthy, which I have been for a couple of weeks now.
The only symptom I have is vertigo and the occasional loss of balance. I probably have fatigue but I think I have just normalised that!
It’s all been a bit of a shock, I had also just started a new job( it was my first week) and unfortunately I had to pull the plug due to the fact I can’t do that job if I have something neurological going on I was gutted! I had put a lot of eggs in that basket and financially I really needed the job. I now really need to find a new job!
Just coming back to this post. Sad times when you are replying to yourself :). I am still just trying to focus on being healthy and I feel better for it. I started exercising again which I am grateful for. Trying to be patient and positive until my appointment, and after hopefully!
Crumbs, that’s a lot on your plate. I am sorry that you have this worry to deal with and also very sorry that you can’t do your new job with anything neurological going on. That is unusual as I’m sure you know - most jobs are OK, but not all - train driver, air traffic controller and pilot spring to mind but I’m sure there are others and I’m sorry that your chosen line of work is such a bad fit with your health concerns, particularly as you had set your heart on it and been appointed to the job you wanted. I am sure that you have already explored all the options that you have to explore there. That is just desperately disappointing for you and I’m really sorry.
Sorry that you are going through all this, its a lot to deal with when you are stuck in limbo waiting for appointments and especially when it is affecting your career.
I also had an mri for an unrelated issue. I saw my mri report through the patient portal and got surprised! With hindsight I’ve been fatigued for a long time, lightheaded and pins and needles but i just ignored it.
It sounds like you are doing all the right things, staying healthy and keeping positive.
My 1st neurology appointment is this Saturday. No idea what to expect. Sending positive vibes, I hope your wait passes quickly for you.
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Thanks for the reply. Yes you are on the right track with the job thing. I am trying to regroup and find something else, actually anything really. I just need to be earning money asap, but it is not that easy.
All the best and take care.
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Thanks. I appreciate that. Sending positive vibes back at you! I hope Saturday goes all well as these kinds of things can. Take care.
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Hi,
Just one thing to add to what others have said: white spots on brain scans can be quite a lot of different things.
Obviously it’s not very helpful when they copy you in to these kind of cryptic letters that have you reaching for google.
If you’ve trained for a profession which is particularly sensitive in this regard, I’d spell out the impact this is having on you asap - perhaps it might just make them get a move on. My experience was that when I finally got to the neuro, expecting answers, he just said, we need another MRI - and I went back on to the waiting list again! The whole process is maddening.
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Yes you are right white spots on brain scans can mean a lot of different things. My research show that particular distribution to point to MS. There are another couple of possibilities though, there would be more but the cervical involvement narrows it down a fair bit.
It now turns out that a few months ago I experienced something that I had no idea until last night is possibly related.
I had what I thought was a spasm in my diaphragm and ribs on my right side. It was terrible. I was very close into thinking I might have to go to A&E as I could not breath without intense spasm. Luckily I did not panic and was able to let in pass within 30 minutes or so with very slow controlled breathing. (thank you years of martial arts and meditation!) Last night I came across a post about MS hugs. Reading about them I am fairly certain that is what it was.