The start of the journey

New diagnosis and before diagnosis
1

Hello all

I’ve been dipping in and out of this forum recently, but haven’t posted as yet, so hello everyone

I’m 38, and have been having some neurological symptoms for the past month, but these have been on and off for a number of years. I went to the doctors, I mean I was frogmarched to the doctors recently :slight_smile: after I suffered some severely slurred speech…I was given an emergency CT, and referred to a neurologist.

I saw the neurologist yesterday, and he was very kind. The CT was clear (not surprisingly), and my reflexes were symmetrical (although brisk he said).

I described my most recent symptoms:

Severe fatigue (everthing is such a huge effort), weakness in my left arm and leg, cognitive issues (slurred speech, unable to think, find words, string a sentence together, or multi task), a couple of instances of twitching, and balance, pins and needles, and generally feeling a bit weird!

He asked about medical history - just phantom bladder issues with two cystoscopies in 1996 and 2010 (normal) and bowel issues, with a barium enema in 2004 (also normal), GERD with omeprazole, and some back pain issues L4/L5 disc rupture in Nov 2012

I didn’t go into masses of detail about every symptom, just mentioned the main few, but suffice it to say, there have been some strange goings on recently.

He said that although I might find my symptoms odd and unusual, he sees a clear pattern which ties a not, and ordered an MRI head, neck, C spine with contrast for today at 2.15pm. I asked him what he thought it was, and he said an inflamation on the brain, or possible virus. He didn’t give me an indication as to exactly what it could be, and as I’ve been clearly wondering about MS, I wouldn’t what you guys thought. I know there is no point speculating, but I should hopefully have some answers by the end of next week when I see the neruologist again. I have been wondering about encephalitis aswell.

Any thoughts are much appreciated.

2

When I saw neurologist he also mentioned inflammation on the brain and said that could be caused by ms or by an infection in my brain. I seized on brain infection as being the lesser of two evils (maybe foolishly I thought that could be fixed and I’d get back to normal). My sister (specialist nurse) pointed out though that if he thought I had an infection in my brain he wouldn’t have just let me go! Anyway, my MRIs confirmed ms diagnosis. And it isn’t the end of the world. I’ve recently had another relapse which we bashed with steroids and I’m hoping that my drug treatment (rebif) kicks in before I’m due another. Good luck this afternoon - let us know how you get on xx

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Like you I am quite new to this forum and looking for hope I guess. I have read so many stories that read so similarly. It sounds like you have a good neuro who is willing to join some dots for you. When I went to see a neuro recently, I wasn’t given the opportunity to say a lot and came out wishing I had said more. However, my reflexes were brisk and that has prompted him to do another mri, which I have on the 10th November. He has also ordered blood tests, which I am waiting to have. It doesn’t help as I have fibromyalgia, B12 deficiency and hemachromatosis all have an element of fatigue, so it is easy to blame those conditions for my sysmptoms. Like you I have terrible speech at times and can’t string words together. My left side is very weak and has been now for years. So we have similar stories, there are many like ours on here and some individuals have been diagnosed with ms. It is hard to speculate but you may well go on to be diagnosed with ms. I hope all goes well today and you get some answers to the problems you are coping with. I will keep checking the forum to see how you are getting on.

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I’m sorry to hear you’ve had a recent relpase Sunflower…I hope you feel well soon

Your reply is much appreciated. I see your point re: brain infection… I suppose they won’t second guess when they’re unsure, so he hasn’t mentioned MS at all. I half wish I’d given him a full symptom list, but then I think I would have sounded a little unhinged. If there’s something there, then there is something there, and I’ll find out later next week. I can’t complain re: speed of my referral / scans etc (albeit private).

My biggest issue in all of this is work and thinking. My brain is my tool, and I’ve been really struggling at work on some days, when my brain just won’t work, or the noise is too loud, or people ask questions too quickly, then ask another before I’ve had time to answer!! I used to be so quick, and apt at multi tasking - now it’s a hit and miss kind of thing!

If nothing shows up on the scans, then I worry about losing my job I suppose, and I only work 30 hours part time as it is. I just want to go back to 4 days, and I feel I can cope with that…a re-charge day whilst my son is at school, but money won’t allow that right now. Hey ho!!!

We can only wait, can’t we. And I’m sure I’m not alone when I say waiting isn’t a game I enjoy playing!

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LouLou Good luck with your scan on 10th November, I hope all goes well. It sounds like you have a lot too deal, and I see what you mean with those being blamed on your symptoms. My bloods did come back clear, but I’ve still started to take a multi vitamin - I thought it could only help, and do no harm. I do wish you well with your results

I do have a question regarding water. I wasn’t so great at drinking water (I’m sure we’re all guilty of it!!). But water has become my medicine. I’m drinking 2 litres a day religiously, and try for more if I can. But I find that if I drink more water, then I feel more clear headed, less fatigued, (not always), but I feel it helps. And when I get really hot, then it’s just brilliant! I wondered if anybody else had noticeable differences drinking water? I’ve never needed water so much either, which is another strange thing. Now I don’t like to leave the house without a bottle!!

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Sunflower, I did post a repsonse, but with being new it said it was being moderated - hope it appears soon, as I don’t remember what I had written lol lol

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I’ve just had my MRI, and I feel a bit thrown. I was taken through the info re: the contrast, which my neuro requested (if needed). The contrast wasn’t used, and the guy told me that it was because the images were clear enough, and that he wouldn’t use it un necessarily. He said the radiologist might over rule him, but that he believes he made the right the decision. This wasn’t an NHS scan, so I’m presuming the cost isn’t an issue? It feels a bit of a curve ball.

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Oh you must be stressed. I get so cross that some of the professionals we come across don’t think about how the half stories they tell will be perceived. What worries you most about him not using contrast?

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What worries me most, is that I lit up ike a Christmas Tree and therefore no dye was needed to clarify images

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Morph,

my road to dx was when the spinal unit referred me to neurology, I thought I had a trapped nerve! So my initial diagnosis was basedon a spinal MRI (no contrast etc.) and a physical exam/history.

I think the contrast is used is there’s very new lesions(?) but I think they certainly don’t always need/use it.

Sonia x

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Thanks for that Sonia. I just wondered as neruo requested contrast, and then radiographer didn’t use it…I don’t have too long to find out, so no doubt I’ll wait and see! xx

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I’ve goy my second neuro appointment today, to review my scan, so feel a bit nervous! Also, had a copy of a letter last night, which was sent to my GP. The top line says - Diagnosis: possibly brainstem demyelination

Well, I’ll no doubt find out a little later. Wish me luck

I don’t think my nerves are helping my walking and tremors today!!!