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Hopefully some answers soon!

Hi everyone! Only posted once before but have found the forum really helpful, reading everyone’s stories has made me feel less isolated and made being stuck in limbo slightly more bearable! My symptoms started in June with blurred vision in left eye, left calf going really tight and numbness on left side of my head, strange tingling sensations and a burning toe! I was sent for an MRI which came back clear, an LP which showed raised protein levels I think!! I also had an EVP which confirmed a swollen optic disc. I’ve been off work for 3 weeks now as I’m struggling big time with fatigue. To cut a long story short I’ve been waiting patiently to be seen by the neurologist, his secretary phoned me this morning to say he’d looked at my notes yesterday and wants me put on list as an urgent new apt and in meantime wants a repeat MRI done. I feel so relieved that at last things are starting to move along, I know some of you have been in the diagnostic process for a lot longer than me so I feel guilty for being impatient but it feels like someone’s pressed the pause button on life, thank God for a patient husband and children! Should I ask if they are using contrast at MRI scan? Will the LP, EVP and symptoms be enough to diagnose me if it comes back clear again? Any thoughts appreciated, thanks folks x

Got neuro appt through for 5 weeks time :slight_smile:

Hi,

LP, MRI and some blood tests were done in my case to exclude other conditions. You can google the McDonald criteria to see what needs to be established for a definite diagnosis. Though (as far as I unsderstand, this happened in my case) sometimes, they may not be able to positively confirm all of them, but will have excluded everything else, in which case it’s a diagnosis of ‘likely MS’. In some cases, the results may not be conclusive enough for that, in which case you’re stuck with uncertainty (as I’m sure you’ve already seen, some people here have been seeing a number of specialists over many years). The LP and the MRI seem to be very important for diagnosis. A second MRI may show more lesions, in which case dissemination over space and time is given, which means that MS is likely. Also, if done with contrast, it may show an active lesion, in which case you may be given steroids to stop the inflammation. The contrast is injected into the blood stream, so there is no way for you not to notice. But apart from the needle, I don’t think there is much to notice. As far as I know (and I may be wrong), there are no side effects.

I’m really happy for you that you’ll see a neuro soon and I hope that you’ll get all the answers you need from the appointment. I always ask my doctors about what technical terms mean, how machines work, what they show, etc. Even if I don’t understand all of it, I get the gist and I get my doctors to engage with me. Mine have been happy to explain it all to me so far, the radiologist seemed downright excited to explain the MRI machine. So ask about what the LP showed and what they are hoping to learn from it. Remember, this is all about you, so you deserve some answers!

I hope this helps, I just didn’t want you to remain without any responses. I’m really just working off my own experiences and research and still don’t feel like I know very much.

All the best for your appointment,

MJ

Thank you so much for your response, I googled mcDonald criteria and I’m hoping the repeat MRI will provide more answers, having a really weepy day today, think I’m a bit overwhelmed by everything, my life’s changed so much over the last few months, my left leg is really playing up at night, it felt like it was full of electricity last night and I’m limping a bit today, my head feels like its got an army of ants crawling over it and I’m just generally feeling pretty sorry for myself, gotta get it together and paint smile on for kids will be home from school soon. Thanks Mj, hope you continue to stay positive in your own journey, Thanks again, Lucy x

Hi I was told 3 years ago that I have fibromyalgia but over the last year things have been getting worse and iv suspected more and when my eyes started going blurry I saw a optician about 3 weeks ago, after being told I have swollen optic nerve so after seeing eye clinic the next day, going AnE for high blood pressure and having MRI the next day. I had now been referred to neuro, my doc didn’t understand so just referred to neuro not urgent so booked on choose and book and got date for 3 dec, but same as you the neuro had looked at my file and cancelled my apt and rebooked it for 5 nov, so less than 3 weeks, pretty happy that I’m seeing them so soon. On my MRI 3 weeks ago they said they was only looking for tumours, blood clots etc n not done with contrast I was told I would need a lp, so maybe neuro with do another MRI of brain n spine with contrast. All this waiting can’t be good for anyone. Hope your apt goes well Lucy and you get your answers too. Victoria x

Hi Victoria, the waiting games hard isn’t it! My mum has fibromyalgia, she suffers more in the Winter with pain but her vision has remained pretty much the same and she has frequent eye apps, must have been scary going to A and E but at least like myself you’ll be seen by a neuro soon! I had an LP done in August, it wasn’t too bad so if you are sent for one try not to worry, best advice is to drink 2 litres of full fat coke afterwards to ward off the headache, wish someone had told me that! Hope all goes well for you on 5th nov, I’m the 23rd, will be interested to hear how you get on. Keep well, feel much better after the support on here with such lovely people, Lucy x

Went in as a emergency on fri, had bloods, ct with contrast n lumbar puncture all in 1 day. Lp was so painful, had to lie down for 24 hrs, no headach, drank lots of coke so think that helped but she had trouble doing the lp, did get there in the end but after back hurt so much was hard to walk. Still uh tying now. But getting better x still going on the 5th to discuss wat happened x

Hi Victoria, gosh that was a stressful day you had on Friday, I’m glad you got the LP over with, I felt rubbish after mine, the headache was the worst! That’s good you’ll have the results back from ct and LP for the neuro appt on 5th, hopefully you’ll get some answers then. I keep falling out with door frames this week, got a lovely bruise on my arm, doorframe 1, me 0!! Keep well, good luck for 5th, look after yourself, Lucy xx