I’ll try to keep this short but as you all know the journey to diagnosis can be a long one!
I have been feeling fatigued and headachey since last December. A doctor initially diagnosed suspected sinusitis and until 2 days ago that was what I thought I had. Until the tip of my nose started tingling. This has never happened before so I googled it, and when I saw MS I immediately thought that there was a fair possibility, as so many other things started to fall into place.
For the past few years I have had this illness which comes at ‘downtimes’. I used to be a teacher and often I’d get it at the start of a holiday. Nothing will shift the headache and my partner never seemed to get ill at the same time.
I’ll summarise the symptoms I’ve had. Let me know if you think it may be MS - I know no one is a doctor and everyone experiences the illness differently, but I would still like to know what everyone thinks. I’m waiting on the results of a CT scan of my sinuses and will see whether they recommend MRI, and if they don’t I am going to go to a doctor ASAP with my new symptoms. I’ve already been tested for Vitamin B12 deficiency. I had EBV as a teenager.
Symptoms experienced together over a few days at a time, like a flu, apart from the recent episode which has been longer:
Fatigue
Thick saliva
Inability to concentrate
Nausea - I’m never sick but I can eat almost nothing and have no appetite
Leg cramps mostly in my thighs when I’m coming out of the fatigue, which stretches and hydration don’t improve
Experienced more generally:
End of my nose tingling (like a hair is touching the end of it)
Weak left wrist and painful thumb joint. Movement makes this worse and wearing a splint makes it better
Left foot knee and foot pain when I run longer distances - not from a specific injury
Mouth ulcers
I’m so worried. I’m under 30, have just been promoted, and have a partner who I know wants a family and a comfortable lifestyle. I know he will want to support me but he also thinks I’m worrying too much and doesn’t want to acknowledge the possibility of MS. Every time I think about what this could mean it really gets to me.
Can I just start out by saying that self diagnosis with the help of Dr Google is ineffective at best and utterly terrifying at worst.
Some of the things you’ve mentioned could be related to MS, but it’s just as likely that they don’t.
It is true to say that many teachers do tend to come down with something at the start of school holidays. It’s also true that may people who work hard in other professions also come down with illnesses when they have a holiday from work. And many people do not. So the fact that you do/did probably isn’t relevant.
So, in your position, have your CAT scan on your sinuses. See what the doctors come up with. Run your fears about potential neurological symptoms past your GP and see if he/she will refer you to a neurologist. I wouldn’t tell your GP that you think you might have MS. They tend not to be too keen on people listing symptoms that seem to fit a certain diagnosis (and btw, some of yours don’t really fit MS, i.e. nausea, mouth ulcers but I could be wrong, as you’ve said, everyone is different).
And above all, try not to worry. What will be will be. If you do have a more long term condition, then you will have it diagnosed. But go about getting that diagnosis the traditional way, i.e. get referred to a specialist, let them run tests and either rule in or rule out diseases.
Stress is of course a big enemy to many illnesses. And stress in itself can cause some symptoms.
Hey, yea I know googling isn’t always the best idea and I shouldn’t trust it as a diagnosis so I’m not taking it as an authority by any means. But this has been a recurring & debilitating set of symptoms and I guess I’ve been trying to find an answer for so long - this is the only time they have all made sense (although I know they don’t all fit). Just so frustrating when everything takes so long. My CT scan results are already 2 days late. I know the NHS are pushed to the limits so it’s probably not anyone’s fault, but so frustrating!
Do I think it may be MS? Not really, no. But then everything looks like MS when you Google it, as you have found out. As you say, it presents in various ways and affects a lot of different systems and the result is that, when you search on anything from hard-to-pin-down malaise to sudden loss of vision, MS will pop up at the top of the search results.
Of course, it is the GP whom you need to consult (not that GPs typically know a lot about MS - most of them will only come across a couple of cases in a career, MS actually being pretty rare, despite what you might infer from Dr Google). But let’s put it this way: now and again a patient walks into the GP’s surgery with MS written all over them. You are not going to be one of those patients.
My confirmation of my diagnosis was based on A Lumbar Puncture and a MRI Scan. Until then I was guessing.
I was finally told by a neurologist the news I had been dreading but it did explain symptoms I have experienced for the last 15 years. I thought it was just the ageing process.
My original diagnosis was RRMS but has now been updated to PPMS.
A year down the line I still have trouble accepting it. Ive exercised through many sports and eaten well all my life. Im a non smoker and have a drink now and again.