Frustrating diagnosis process.

I’m 39 yrs old, female. Around 6-7 years ago now I went to my GP complaining of pains un my hands, no tests were done and he told me I had carpal tunnel syndrome, gave me wrist stents an that was that. A year later I was getting the same pains in my feet and again was brushed off with tarpal tunnel (despite my pains being nothing like the type you would get with carpal/tarpal tunnel syndrome. Over the years, little by little I’ve reported new symtoms and last year one of my GP’s (without even a physical examination) decided I had fibromyalgia, again the type of pains I get are nothing like as described by fibromyalgia sufferers but it was the only asnswer I was getting so believed him. Since December the tingling I’d only ever experienced in my hands and feet before had quickly spread up both legs, both arms and since this weekend to my lower face and also recently cold sensations. For 2 weeks I’ve been suffering with bladder sensations (feeling the need to pee but bladder us empty, trouble fully emptying at times and needing to go back a 2nd time) but urine tests showing no infection. Some of the bladder symptoms have been going on for many months but I had a radical hysterectomy last April for cervical cancer (no chemo or radiation needed) so I’ve put it down to my body adjusting. For a couple of years I’ve had lots of other vague symptoms… Bouts of multiple muscles twitching. Shooting, electric shock type pains in limbs. Small numb patches. Burning sensation like sunburn that moves around. Terrible restless legs and arms at night. Sciatica since the summer that has not eased. A strange sensitivity to certain sounds (tapping sounds, pots and pans knocking, certain pitches of kids shouting…) I had a temporary hearing problem in my left ear that dulled my hearing for around 9 months but then got better (no infection or wax problems found). Bout of very sudden dizziness that have no trigger. What feels like a loud noise/shout/bang with a big flash as I’m falling asleep or wakes me in the middle of the night. A patch of skin on shoulder blade the size of say an orange that feels tingly for a few weeks but fades. I get twitches in my lip or eye that can last for months at a time. A milder than sciatica type feeling down both arms… The list goes on. The cognative problems I’m not sure of but may ring bells with some of you? Problems understanding what people are saying to me or on tv even though I can hear them just fine. Terrible memory. Having trouble recalling certain random words. Misplacing things. Moodswings (have no ovaries but menopause symptoms are excellently controlled with HRT, no flushing or sweats etc) I’ll get mood swings for a week or 2 then feel fine again. I’ve probably missed out loads but you get the idea. Am waiting for a date for an MRI scan. My GP’s words were “MS is a concern at this point”. My fathers sister (who I look and sound just like) has had MS since her early 40’s. I know it’s not hereditary but makes me wonder if I’m a little predisposed. I just have a quick question if it’s o.k? I’ve had MRI’s before on my body when I had cancer and struggled with the enclosed space. The one took 45 mins the other 75 minutes to complete! How long does a head one take roughy? Hoping it’s a LOT quicker! Thanks for reading and T.I.A for any replies. Joanna x

Hi Welshgirl. I had a head MRI recently and it took about 15-20 minutes i think.

Hi Joanna

I actually think an MRI is likely to last a bit longer than Rupert (Bob) thinks. Personally I’m quite relaxed about MRIs, but I can imagine what it must be like if you’re bothered about enclosed spaces.

I don’t know if they did this when you had a full body scan, but for the brain, they put a sort of ‘cage’ around your head, put headphones on you and give you a rubber squeeze ball thing to call for help. There’s also a mirror in the machine so you can see the operatives booth.

Often they will want to do a scan both with and without ‘contrast’. This is a dye which they inject, sometimes into a cannula and sometimes straight into the vein. The contrast helps the neurologist to see ‘enhanced’ images (I actually have no idea what this means, but it’s all I’ve ever been told!).

So, they’ll do a load of different scans, they sometimes tell you how long this bit of the scan will take and also whether it’ll be especially noisy (i.e. this next one’s 3 minutes long and it’ll be loud). Then they’ll pull you out, stick the contrast dye into your arm and push you back in.

If they don’t offer you one, ask for a wedge / pillow for under your knees. It’s easier to keep still if your knees are slightly bent.

I would imagine the total scanning time is only about 20 minutes, but with little gaps between each scan plus pulling you out and pushing you back, it’s more like 30 minutes. Or more if you’ve inadvertently moved and they have to redo one.

I’ve found the scans to be a bit hypnotic and I practically (or actually) fall asleep. But even if you’re bothered by the enclosed space, if you try to relax and maybe think about something else while it’s going on, it won’t seem too long (I hope).

Good luck with it.

Sue

Like Sue, I am lucky because I don’t have problems with the scanner and I have also fallen asleep in them but I know that lots of people have issues with them because they can feel claustrophobic.

It might be worth checking up with the hospital about what type of scanner they are using. Some of the newer scanners are a bit less constricting and some people find them less frightening. They are sometimes referred to as “open” scanners but this is a bit misleading because they are still a tube that you have to pass through rather than a “polo mint” like a CT scanner. My hospital (in Cardiff) has 3 separate scanners I think - I have been in 2. One was very narrow and I think that might have been difficult for some people but the other was much newer and was roomier. The ultra-modern one they have in the University research labs is positively luxurious!

On a practical level, having a pillow/wedge to support your knees is absolutely vital.

Some people on here have been prescribed diazepam or similar by their GP as a one-off if they have been very anxious about undergoing a scan so that my be a good idea for you.

It isn’t just anxiety than can cause problems with scanners - sometimes it is a space thing. My brother goes to the National in London for a non MS condition and he always has a fight with them over the scanner they try to use for him. He doesn’t look particularly large or fat but he is very broad shouldered (ex rugby player) and he doesn’t physically fit in the smallest scanner. But they do keep trying to cram him into it!

From my (rather too extensive) experience of scans the time taken for a scan will depend on what the consultant has ordered.

A basic had scan (like my regular check-up one because I am on Tysabri) takes about 15 minutes. They take the minimum number of “slices”

A more detailed head scan such as during initial diagnosis takes about 20-25 minutes because they are taking more images. Double that for a scan with contrast because they have to repeat the process (maybe a bit quicker because they won’t have to repeat the set-up process.

The real killer is a head and spinal scan with contrast because that involves 4 separate scans with and they have to reposition you and repeat the set-up process between each of them. I don’t think that they like doing them together because of the time it involves. My one and only “double shuffle” took over 2 hours which was not fun, I can tell you!

A scan with contrast is ordered to check up on any progression/new activity. The contrast drug highlights newer/more active damage. As my first MS Nurse told me, the “new stuff lights up like a Christmas tree” on the scans.

Thanks for explaining about contrast, I’ve just accepted it time after time, without ever knowing what it does beyond ‘enhancing’ images. So that really helps.

Sue