So worried....... :-(

New diagnosis and before diagnosis
1

Later on today I have a head and neck MRI. This follows a visit to a neurologist last week, when he also took some blood for a test.

The blood test is to see if I (may?) have Myasthenia Gravis.

The symptoms I’ve been having for weeks now are:-

Extreme tiredness in the morning, mid-morning, mid-afternoon and mid-evening. (Doesn’t leave much time for much else!!!).

The tiredness in the morning is made (dangerously) worse by having a hot bath. (So, I’m not having morning baths at the moment!!!). These dangerous epsiodes are so bad that I collapse on the bed panting for breath and totally weak with internal tremors.

Drooping on one side of the face. And sometimes drooping of eyelid when I’m really tired.

Weakness of muscles - particularly following sudden exertion. Eg. When sailing and I capsize.

I’ve been off work for two weeks just unable to function, but towards the end of last week I decided to try and work from home when possible, as a) I want to see if I can get activity to breed energy. b) I don’t want to let my employer down. Yesterday I was not too bad, although there was little work for me to do. Today however, I feel dreadful. Unsteady on the legs, internal tremors, very tired feeling, and to top it off - worrying like hell.

The worry itself can add to (create?) these symptoms, so it could actually make me appear worse than I actually am. (If it is MS or MG). In either case, I’m just at the end of my tether not knowing how I’ll be able to cope if a) It is either of these diseases, b) Neither of these - then what? I can’t carry on like this.

I’m not depressed. Male, 51 years old. Smoke (Yes, I know I shouldn’t), Drink alcohol at the weekend, but hardly able to as it makes things worse - but I just feel so angry with being washed out - I choose some relief in this form. Married, two children aged 6 and 8 - who need me (Hence the worry). Symptoms first appeared about 8 years ago - and was dismissed by GP as being ‘this happens when your wife is expecting - it’ll pass’ - and I guess it did, although there have been other episodes of extreme weakness/fatigue over the past 24 months - which I dismissed as ‘psychsomatic’).

Sorry. Rant over.

Mutt

2

Hi Mutt, and welcome to the site

Neurology is a bit of a minefield as so many conditions cause identical symptoms, so the best thing to do is to try not to worry about what might be and just take it one day at a time because no one can have syphillis, AIDS, MG, NMO, vit B12 deficiency, Lyme’s, Lupus,… and MS: they are all things that need to be ruled out though and that’s why they do the blood tests.

Can worry add to symptoms? Yes! So that’s the other reason to let go of the fears for now: deal with it when it happens and not before, because it might not!

I know it must seem that a diagnosis of MG or MS is insurmountable, but somewhat surprisingly, it isn’t. We cope. Tbh, we have to, but it is amazing what we can adapt to, learn to live with or work around. There are some amazing meds these days, as well as excellent physio, aids, etc and, with all the help, life goes on, differently than before and differently than we expected, but it can still be good.

A couple of other immediate suggestions from me: lukewarm showers are infinitely better than baths and STOP WORKING! The very best thing you can do for yourself at the moment is to rest. You’ll probably get back to work quicker if you do, so if you want to do the best thing for your employer as well as yourself, just rest.

I hope the MRI goes well. Be prepared to be very bored (and deafened by the noise)! Btw, you can get a copy of the images if you ask (there’s normally a charge which covers the cost of the disc and the software licence ~£20).

Karen x

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Thanks Karen, very much, for your wise and helpful reply. Taking a step back may very well put me in a better position than if I try to prematurely ‘do battle’ with whatever it is.

Thanks again for the reply. Makes very good sense.

Mutt