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Mixed messages and progressive symptoms

Hi,

I’ve been lurking on here for a while but finally got the courage to post today after receiving my appointment for an mri scan.

5 or so years ago I initially started showing symptoms that resulted in a referral to a neurologist (spasms, tiredness, difficulty walking) and after various tests excluding an MRI the symptoms stopped and I stupidly discharged myself from the care of my neurologist and self diagnosed stress and diet as to the cause.

In February the symptoms returned, at the same time as redundancies were announced at work. Once again I put them down to stress and ignored them, until the symptoms continued after my job was safe. I eventually went to my gp who immediately referred me to a neuro. I had my appointment and have since been booked in for a 3T MRI on Wednesday.

The neurologist has said in his report that it is unlikely to be MS however has still sent me for a scan. On top of all this my symptoms have begun the include localised itch without a rash and peripheral vision being blurred.

So I guess I have a couple of questions really, has anyone else had a similar experience of ‘probably not’ but still been sent for a scan, and is it worth mentioning my progression of symptoms on Wednesday?

Hi,

I DO think it’s worth mentioning any and all symptoms - however, NOT to the scanner operators. I don’t mean to belittle their work, because they’re trained technicians - but not doctors. They won’t be interested in a discussion of your symptoms.

Well, there might be a very brief: “So how did you come to be sent for an MRI, then? What’s been going on?”, but you should not go expecting a medical consultation - Wednesday won’t be one!

I would tell your GP, not the MRI team (who won’t have access to your medical notes) about the new symptoms.

Be cautious about use of the word “progressive”, because that tends to have a specialised meaning in the context of MS, and to mean a symptom that has been steadily worsening, without going away.

MS symptoms tend to fluctuate by nature, so a new symptom is not necessarily a “progressive” one. I would describe the symptoms simply as “new” or “additional”, but avoid the word: “progressive”, as new symptoms do not necessarily mean you have a “progressive” form of MS (if you had MS at all).

In fact, if you have had distinct episodes from which you recovered well or completely, “progressive” is almost certainly not the medical term here.

Good to get it on the record that there’s been new stuff, though.

It can influence both diagnosis and treatment options.

Tina

Thanks for your comments Tina. After having a bit more of a read around the website rather than just the forum I realised that the term progressive was probably the wrong one.

I think that once I’ve had my MRI I’ll contact my gp and let them know about my symptoms. Unfortunately I’m typically male and English about it and feel like I’m wasting my doctors time.

Hi again,

You won’t be wasting their time, because they won’t even necessarily want to see you or do anything (especially as investigations are already ongoing, so there wouldn’t be a lot more to suggest). It’s simply a matter of getting it on record that there have been new “happenings”, as they will look at symptom history both for diagnosis, and - if you are diagnosed - determining the most appropriate treatment. If you don’t mention new symptoms, or flare-ups, when there have been some, it might not only delay diagnosis (usually require at least two documented “flare-ups” for a diagnosis), but what treatment is recommended. If the disease is perceived as lower-level than it really is (because you didn’t mention something new that happened), it might be decided it’s not aggressive enough to need treatment at all, OR that it doesn’t need such powerful treatment as might otherwise be offered.

So be honest, even to the point of keeping a record. I’m not a great believer in keeping a daily journal documenting every little thing that happened from hour to hour - I think that level of detail just encourages dwelling on symptoms - which of course makes them more noticeable. But just to the level of: “November time: had numb face and blurry vision for a couple of weeks” (or whatever it happens to be).

When I was first diagnosed, I was asked to draw up a timeline of what I thought had happened when. To my surprise, it went back quite some years, and I realised I’d had possible first symptoms long before MS was even considered. I did not have to give exact dates, and some were as vague as: “in my 20s”. Others I was able to date according to life events - e.g. “that must have been the year that Dad died”.

They do use your own account to try to build up a picture of how aggressive (or not) the disease has been, so try not to self-censor to avoid wasting anyone’s time.

Tina

Stiff upper lips will only get you so far. You have something you need to address, identify and begin the fight against. It is time for you to whine like a little girl with a grazed knee!

Your symptoms are not far off from my own. Mine were vague and mild, but luckily, i am not shy about getting good value for my tax payments and so with persistence and several hospital visits i got a CT scan, a neurologist’s name, a few MRIs and a diagnosis of RRMS.

I kept a diary; nothing extensive just one line daily, describing any spread or increased severity of existing symptoms or when new ones showed up.

interestingly, from maintaining this ‘diary’ i was able to detect a correlation between MS flare ups and life occurrences; stress is a factor. i would get stressed about something (usually sustained over several days) and six weeks later, symptoms would manifest.

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Hi again,

Paolo, thanks for your advice. I took it and have chased the hospital for more information. I had my scan last week, and was told by the radiologist that I should expect to hear back within a week with ‘next steps’. So today I rang and asked if there was anything, only to be told that my consultant has now changed (still a consultant neurologist) and that I should expect a letter 6 to 8 weeks from my scan date.

I’ve also set a note up on my phone where I can add any new happenings or when symptoms have got worse/better. Nothing much, but it all helps bring a picture together and also makes sure that I don’t forget anything.

I suppose I’m just playing the waiting game with the hospital now, and I am grateful that I have got as far as I have. My initial referral time limit was December 3rd so the way I’m looking at it I’m ahead of schedule. I’m just a bit annoyed that it’s looking unlikely I’ll have any more news before Christmas now.

I sympathise, Cronus. I was initially surprised by how long things take to happen! I’m still waiting for any kind of letter from the second neuro I saw on Hallowe’en and am expecting an appointment date for a Visual Evoked Potentials test. Keeping a symptom diary and taking a simplified overview to my appointments has been very helpful, especially with my ‘cog-fog’! Best wishes :slight_smile:

Hi reikiblossom,

I suppose we can’t really complain; there’s only a certain amount of time and places available for tests, but it is definitely frustrating.

I must say though, either my chasing helped or I’ve been lucky, but I had a results letter from my neuro. Apparently there are no abnormalities on my scan. Which has been a bit good news bad news in a way. I’ve got an appointment with my GP tomorrow to discuss next steps because the hospital were less than forthcoming in their letter, but I somehow feel I’m back at square one as they’re now talking about treating the symptoms without doing any further tests to get to a root cause.

I was always hoping i had Lyme’s disease. Maybe six weeks of antibiotics will sort you out?

Nothing wrong with getting a clean MRI scan result. I wish mine had been!