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feel like I have reached a dead end.....

Hi everyone, bit of an update and probable last post from me as I don’t really belong here! Thanks to anyone who has replied to me, now and in the past.

Anyway, I received a copy letter from Neuro to my GP and my LP and VEP were normal so does not think MS! Phew, obviously I am REALLY glad but my problem now is this:

Originally the Neuro said he would see me in clinic to discuss results but this is not now happening, I am not getting an appointment so I have no real answers about what the bright spots on my MRI (numerous T2 hyperintensities in the white matter of brain) are and what is causing all my symptoms, maybe it’s just fibromyalgia? The radiologist said it could be small vessel disease, does this mean strokes, dementia? I am only in my 40s and don’t smoke but this is greatly concerning me.

So, as it stands, I am still really ill, yesterday I was so dizzy, I had to walk around the house holding onto the walls, today it is a little better. But I have no real quality of life, I cannot work and don’t go out much as I feel so awful. I also have tingling face, tongue, numb patches of skin, fatigue, double vision, creeping flesh sensations, visual disturbances. I have had l’hermittes in the past.

So do I just try and carry on with these symptoms, should I go back to GP and see if I can discuss the brain MRI findings with them and see if they have any more ideas? What would you do in my situation as I feel that I have had all the tests now and still no answers?

I am grateful for any ideas

x

I’d go back to your GP and state what you have wrote here. You want the MRI explained and you want to know what the next step is given you have all these symptoms. These are both reasonable requests. Your GP may not be able to explain the MRI buy they should signpost you to someone who can. You could also contact the neuro’s secretary and explain the results have not be discussed with you. Ask how this can be rectified. A letter may suffice. Be polite but assertive.

Me also and it has been going on since 2008. Just no clear answers. I have a dropped foot and spasticity from a lesion in the neck - l’hermittes also.

Clear Brain MRI, VEP and LP too. Have you had an MRI of the neck ? - as neck lesions cause l’hermittes…

I am 50 and I think the older you are it seems the harder it is to diagnose. I get that impression from this site too - the young ones have a symptom go to the doctor get scan, get dx and then on DMDs quite quickly.

Moyna xxx

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It’s not quite that simple Moyna, and as a youngish person I find your post a little offensive. Despite the fact I ended up in hospital with an acute relapse, an MRI which lit up and positive lumber puncture, it still took time for the diagnosis and time again for a DMT. It was a difficult time to put it politely. A lot of perseverance and self education on my part helped, as did having a good medical team. Various evidence is required for an MS diagnosis and sadly I fit the bill. Have a look at the 2010 McDonald criteria for information on this.

I do understand your frustrations though.

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I agree with you, Humbug.

I am confident that diagnosis is reached purely on the weight of evidence, and is unconnected with the age of the patient.

I was diagnosed in my mid 40s, with comparatively little trouble - once I’d actually reached Neurology, that is. I believe I’d already been ill for some years, but not that my relatively late referral to Neurology was in any way age-related.

I had fairly classic evidence of both brain and spinal lesions, thus satisfying “dissemination in space” (from the McDonald Criteria) straight away!

Like many people, I had to wait for proof it couldn’t have been a one-off (dissemination in time), in either the form of a subsequent episode, or renewed activity visible on MRI. I didn’t have a subsequent episode - that I knew of - to report.

So we did it by scanning again after six months, at which point renewed disease activity was clearly visible, even though I hadn’t been aware of it from a symptom point-of-view.

It took about eight months from start to finish, to collect enough evidence, and rule everything else out. I didn’t think that was unreasonable, and have at no point felt the goalposts for diagnosis were made artificially harder to reach, on grounds of my being an “older” patient. I feel as was diagnosed just as soon as the evidence permitted.

Tina

Didnt mean to offend anyone as I know there are exceptions to the rule. My neuro did say that age complicates the issue with diagnosis as there are more likely to be other causes as you get older. The average age for an ms dx is 25 and if a young person has numbness weakness or ON then MS is usually the first suspect.

There have been quite a lot on this site that are 50ish that have been on the bandwagon looking for a dx for over 5 years like me.

Usually a RRMS dx can be made in someone young in under 2 years - my neuro told me that. I am sorry Humbug if your dx took much longer than that.

At me last neuro appointment I asked if I could rule out MS finally after all my tests and the answer was “It might still be on the cards”

Moyna x