@squishedmish81

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squishedmish81

Am I the only person between diagnosis and and an MRI?

Hello, So I got diagnosed with MS is April by a very good Neurologist based on a fairly nasty attack which left me numb/very very weak on my right side and unable to walk in February. He ruled everything else out with all of the other tests and while he couldn't find lesions on a standard MRI, he is sure they will be find on a deeper MRI. Since then I've done my research and realised that its very obvious that I've had this a while (I've been suffering from numb hands and feet for a long while and for 3 years at least have been in and out of illness, pins and needles and weakness. Since February my life has changed as the symptoms are now sticking and I have had a number of relapses since. My appointment to see an MS dr is in August and I understand a deeper MRI and a lumbar puncture will be done. Here's the thing, technically, despite everything and the fact that every day is like wading through treacle and the attacks are rubbish and I often lose feeling in hands/arms/toes/legs etc and have blurred vision in one eye....technically nobody has seen a lesion yet. So, well I feel like a bit of a fraud and a bit pathetic. I understand that this period between being told you have MS and then lumbar punctures/deeper MRIs and help is common, but is anyone else in this weird holding pattern? I can't quite believe I want to see lesions on my own brain, but unless I do I think I might go mad!

Stumbler

@Stumbler

I can understand your confusion and frustration. MS involves lesions on the Central Nervous System, this includes the brain and all the way down the spine. It seems strange that you were given a diagnosis in April, but they are still investigating now. The lumber puncture is used to provide confirmation from an inconclusive MRI. Perhaps the MRI this time will cover the brain and the spine, with the possibility of contrast being used. Don't feel fraudulent or pathetic, the medical profession need to ensure that the "T"s are crossed and the "I"s dotted. MS is notoriously difficult to diagnose. Obviously, getting a formal confirmation is the first hurdle. As soon as this has been overcome, you need to know what treatment strategy you'll be offered to help you manage the condition. You're more than welcome on this forum as you navigate your way through this frustrating time.

squishedmish81

@squishedmish81

Thank you stumbler. The wait is just the time it takes to get to see the MS specialist and I do understand that. I saw the first Neurologist privately to speed up the process, only to find out that the person I will be seeing going forward is NHS only and there's a wait. The frustration is now much worse it it got during that time! I thought I'd keep a symptom diary so that I could go through everything with him in August and even wondered (back in April) if I'd have much to put in it. Turns out I shouldn't have worried about that!

squishedmish81

@squishedmish81

*how much

Stumbler

@Stumbler

In the meantime, be kind to yourself. A moderate and balanced lifestyle and diet, avoiding stress/worry is a good strategy. I know it's difficult to avoid stress and worry at these times, but they are emotions which have no benefit and can make situations worse.

squishedmish81

@squishedmish81

Thank you for your kind words

Explorer

@Explorer

I was diagnosed 21 years ago and have had numerous MRI's since. For what it's worth, I would plain refuse to have a lumbar puncture. In my view the procedure is archaic and dangerous. The neurologists should be able to confirm q diagnosis with certainty via MRI. I agree with Stumbler on the importance of looking after yourself through this challenging time. Take it slow and easy...

pottypete

@pottypete

I too would refuse the lumbar puncture. It is an archaic torture ritual. I've had a couple and on one, the 'doctor' hit my spinal cord and blamed me for almost jumping off the bed in shock (obviously not my fault), the jumped up little arsehole. I was lucky the fucker didn't paralyse me, he was so inept(he was a junior and I was one of his first. NEVER again).

Stumbler

@Stumbler

C'mon guys. Every medical procedure has risks. I had a myelogram/graph, back in the 80s, which introduced a contrast into my spinal fluid. That wasn't nice - apparently I had a pronounced bone structure :???: Well, in the late 90s, they wanted to do a lumber puncture, to which I replied, "over my dead body"! But, I got persuaded, on the basis that scientific advances had made all the equipment finer and more reliable. I reluctantly agreed and had the procedure without any problems at all. It might be an old procedure, but it does provide further clinical evidence, when MRIs are inconclusive.

pottypete

@pottypete

I've had quite a few lumbar punctures and also had a myelogram in the 80's along with a cerebral angiogram, all of which were very unpleasant. I've given them all the benefit of the doubt before, but would not do so again. The contrast dyes they use cause considerable suffering for me and I think I suffer enough, without the quacks making me suffer more.

scott28ren

@scott28ren

I too am back on the diagnosis trail, some back story... started having symptoms around 19 years old, after a year of tests (not for MS) everything came back normal so ME was suggested and I was happy with that. Fast forward umpteen years, endless relapses and a few Neuro's later my symptoms changed (pins & needles/numbness) I was referred back to the same Neuro that suggested I should see a Psychiatrist the last time, so wasn't expecting much. She ordered MRI (without contrast), Lumbar Puncture and Evoked Potentials which came back all negative/clear (I've been told you can have negative results and yet still have MS, ie. difficult to dx). Instead of having a closing appointment with Neuro to ask questions and inquire about repeat tests I was bumped back to my GP short swift and told to just get on with it. #confused One year later still suffering on/off symptoms and a relapse I had Paraesthesia (tingling/numbness spreading across my upper body - fingers, arms, neck, face and tongue) 3 times, last 2 lasted around 45 minutes so I kind ignored it and was told if it happened again go straight to A&E. This time it lasted more than 3 hours and I'm still having symptoms days later. A&E admitted me , ruled out heart problems (MS Hug) and Stroke, but again mentioned possible MS - so having an MRI in a few weeks and referral to a Neuro again... here we go again!?! I'm not sure if it is MS, but I do know it can take a long time to dx and like you I wish the lesions would just show up!!

pierogiprincess

@pierogiprincess

It refreshing to hear that there is great support on here. I had my first relapse back in April last year (optic neuritis) and now the second one of my right side giving up by not being able to write sometimes, type and also walk if I've had a few vodkas. as well as tons of other things I wont bore you with.Got my third mri next week and had two lumbar punctures (first one was a fail as I have a boney back!!). The fatigue is a shit but the main thing is the getting you down stuff and this web site helps. The neurologist told me a couple of weeks ago although I haven't got diagnosis I need to accept I most likely have MS. I am at the age when I really should get cracking on having a baby and the last 18 months have been a blur. I don't want to admit this is happening (hence silly name, no pic yet!) but I was given some advice by stumbler a few months ago and that was to take care of yourself and I am trying hard to do that. Don't give up. When the brown stuff hits the fan, remember you are not alone. Hope it gets a little easier.