Just need some pre-holiday reassurance please !

New diagnosis and before diagnosis
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Hi all, You guys kindly helped reply to my first post a week or so ago and I was hoping you might be able to offer some words of wisdom. Ive been experiencing potential MS symptoms (Im un-diagnosed) for about 4-5 weeks now. Heavy legs, pins and needles, twitches on and off, fogginess etc following a bout of labyrinthitis. Yesterday I finally got to have lots of balance tests including the vertigo inducing caloric test (grim !).

Im due to go on holiday to Vietnam on Saturday with my wife and I on our long planned 2 week trip. Given my symptoms Im really mentally struggling which I think is as bad as the physical symptoms and I desperately want to have a good time, but Im finding this quite a lonely and sad journey to be honest. I am finding it hard not to think about the symptoms which is probably making it worse and I’ll be honest Im worrying and probably seeing the worst in every thought, being a person who until 6 weeks ago, ran, climbed hills, mountain biked, skiied etc…and now sees all this crashing down…

Anyway, I will try and remain upbeat. Ive booked to see the ENT consultant to discuss the ear tests when Im back and as I feel right now, I really want to push for an MRI to at least have some more clarity on whats going on.

Heres part of my angst. Just under 2 years ago, following my tinnitus ringing louder, I had a partial MRI of the ear and mid brian section. Ears fine, but they found a pineal cyst in the centre of my brain…thats not the conversation you expect to be having ! I also noticed on the paperwork it mentioned something like “a few small bilateral scattered foci at T2…” cant remember the rest but I think it mentoned something that might be associated with alzhiemers… my ENT consultant who has a very good reputation didnt seem concered. I was then referred for a full MRI which they day I as due to see the consultant the flamin NHS system got a bug and went down, so I couldnt review the results with the consultant. I received a letter stating he had reviewed the MRI, was satisfied it was a pineal cyst and didnt need to see me again. No mention of the “few small bilateral foci”…

…so at the time, I managed to convince myself that if there was something unusual they would have asked me to come in. So quesions…

  1. Do you think that assumption is true, if they had seen something such as lesions that woudl have concerned them they would have asked me to come back…(logic is telling me of course)

  2. I appreciate it was 2 years ago and I have new symptoms, so asking for a new MRI is not a crazy ask?

  3. Vietnam - Someone please tell me to get a grip, relax and enjoy myself. I think I need it again…

Thanks so much you are all stars !

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Hello Mikey

Yes, I think your initial assumption was correct. When an MRI scan is done, the scans are reviewed by a radiologist then sent to the consultant who ordered the scan. Any lesions would have been seen and commented on

I agree with you that given your recent symptoms, you could argue for a new MRI of your brain. A neurologist should ask for this, so as your GP has said she will refer you if you continue with the symptoms after your holiday, this I imagine would be easily arranged after Vietnam. I assume this to be the case once a neurologist has listened to your history and conducted a neurological examination.

Re Vietnam, I won’t tell you to get a grip, but try your damnedest to relax about your symptoms. Worrying about the symptoms and the need for a new MRI will just make you miserable and waste the holiday which you and your wife have been planning for and looking forward to.

Your GP urged you to go on your holiday. If she had any doubts about your health and this holiday, she would have said so. It would have been irresponsible on her to do otherwise.

So, go to Vietnam. Try not to panic and worry all the time. Enjoy everything you can do. Make sure you rest sufficiently given your ongoing symptoms, and plan to see your GP when you get home. You could make the appointment now for the Monday after you get home. Then you can rest assured that you won’t get home and have a further wait for a GP appointment. If in the meantime you find your symptoms are gradually improving, you can cancel the appointment.

Have a wonderful memorable holiday with your wife.

Sue

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Thanks sue that’s a lovely message and really made me realise I need to take a little stock of the situation as I’m lucky to be going on this trip. I’d not thought of booking a go appointment in advance as our surgery normally works on the “call at 8am and we fit you in that day” type of booking. I’m going to use your reply as little note of inspiration when I’m feeling down. Thanks again

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Just let us know when you get back what a fabulous time you’ve had and make me envious. That’ll make me happy.

Sue x