@Emma19

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Emma19

Waiting on my MRI

Hi all. I'm Emma and new to the site, not sure if I'm doing this right. I saw a neurologist about 4 weeks ago and i have my MRI on the 8th of September. I'm nervous of what the result will be and more so will they be able to tell anything from it. She said due to my symptoms and age it was right to be concerned about MS, however all of the symptoms that were bothering me have now disappeared. I do get pins and needles in my hands and feet regularly but only lasts a min or two and i get a strange sensation in my legs if I walk too fast trying to keep up with hubby. I don't really know what I'm asking just wondered if anyone else is in the same situation with waiting or can offer me any suggestions :)

NicciS

@NicciS

Hi Emma, it's understandable that you're nervous. I had an MRI in December after waking up blind in one eye at the start of November. There had been lots of seemingly unconnected symptoms before then- numb legs, tingly fingers, crap balance- but the eye was so dramatic that action was needed. Sure enough, an MS diagnosis has followed but the way I look at it is nothing has changed from the way things were before my eye went crazy- I had MS then, I've got it now. Life goes on exactly as it did before, the only difference being that I now take a DMT every day and now the odd symptoms I've had on and off for the past few years have a name. My advice is don't Google- you'll read all sorts of scary stuff which is probably irrelevant to you anyway; just try and be patient. Easier said than done! And good luck.x

KoffeeLover

@KoffeeLover

Hi @emma19, I'm in limbo land like you. I had my MRI on 10th August and I'm still waiting for a follow up appointment. If we have MS (pretty certain in my case!!) any spots in the brain (known as lesions) will still be there even if the symptoms are gone or reduced, so they should still be able to diagnose. However, sometimes the damage is quite difficult to see the first time around, or they can only see one lesion (need several for a diagnosis of MS) so they are not always able to offer a firm diagnosis until a repeat MRI some months later. Frustrating!! Btw, take a CD to the MRI with you - most centres can play it for you while you have the scan which is a helpful distraction - it's bloody noisy!!!! ;)

Emma19

@Emma19

@niccis thanks for your reply. Suppose you are right nothing will have changed, symptoms now just have a name. How are you finding your treatment? Oh ive already Googled everything there is to Google before I saw the neurologist so too late for that. @koffeelover wow what a wait. Do you not have a date yet? My neurologist said she'd just give me my results over the phone and refer me to Ms specialists (which led me to believe she's pretty certain that's what I have) she did say they might do a lumber puncture depending on results of mri... Will you have this? How are your symptoms? Great thanks for the tip x

NicciS

@NicciS

Treatment is going OK. I'm on Tecfidera and I've read a lot of people saying how awful they've found it on here but I have had hardly any problems at all. A few hot flushes when I started the low dose and a bit of nausea when I started the double dose but thats about it. Everyone is so different. Good luck with everything.x

KoffeeLover

@KoffeeLover

@emma19 I'm really hoping to avoid a lumber puncture - it's pretty much the only medical procedure I'm really frightened of!! ?? But I'm also sure that if it's necessary that I'll be taken good care of! At the moment my symptoms worsen on a daily basis - if this keeps up I'll probably have to get a wheelchair very soon. My son's a wheelchair user, so it doesn't worry me, I just worry about how on earth I pay for it (NHS in this area have a two year waiting list and only give chairs if you can't walk even a few steps inside). I'm supposed to go back to work on Thursday (I'm a teaching assistant with severely learning disabled kids/severe ASD) which is very physical. I can't see it working out ! My GP has suggested signing me off. I'm going to go back and see how it goes, but I'm not hopeful!!!

Emma19

@Emma19

Thanks @niccis glad your finding your treatment okay. @koffeelover Oh Im a bit nervous myself about a lumber puncture but I'm sure it's not horrendous! Oh really? Sorry to hear they're getting worse! I feel like a fraud now because I actually feel well! What age is your son? Oh really? Where abouts are you that you have such a wait? I would get signed off if I were you! You'd be as well to look after yourself at this time, it's important that you do and don't put too much pressure on yourself!

KoffeeLover

@KoffeeLover

@emma19 my boy is 14, I also have a 12 year old daughter who is AB. We live in Bucks (uk) which sadly is a Tory stronghold, which affects attitude towards illness/disability despite being the birthplace of the Paralympics ??

Emma19

@Emma19

@koffeelover Oh that's nice you feel comfortable with wheelchair use as your son uses. Sorry what's AB. Oh that's so rotten! Peoples attitudes are just ridiculous when it comes to that sort of thing, never know when something can happen to you or a loved one which changes their life!

KoffeeLover

@KoffeeLover

@emma19 sorry, so used to using disability shorthand!! AB means able-bodied!!

Lite

@Lite

@emma19 I was in same boat not so long ago and know just how frustrating and nervous the waiting game can be,But keep positive, I don`t know what the waiting time for results of mri is at your hospital but mine was up to 6 weeks.. My advice is if you are worried and have not heard anything give them a call to hurry them along and keep calling... Also in the mri make sure you get earplugs aswell as the headphones that they give you, as the 2nd mri i had they did not give me earplugs only headphones and it was twice as loud as 1st mri when i did have earplugs.. Keep strong and Good luck

Emma19

@Emma19

Ah makes sense @koffeelover please keep me updated! Hello @lite how are things with you now? Well my MRI is on the 8th and to be honest I've no idea how long results could be but I can't understand why 6 weeks would be necessary. Surely it just takes someone to look at it and say what they see? Oh really? Gosh I'm now intrigued to how loud this thing is :O Haha

KoffeeLover

@KoffeeLover

True @lite - I wasn't given plugs, just headphones, and it left my ears ringing for the rest of the day ? Yes @emma19 - it's really that loud!!!

Lite

@Lite

@emma19 i am good apart from my walking but i have ms specialist appointment tomorrow... I thought exactly the same thing, my scan is there why not someone just look at it..My 1st mri, we had to ring and got results after a week(not proper results only because neurologist looked at it) and 2nd one the results came through post 6 weeks later hence why i am saying call them if you hear nothing.. As for noise there is certain parts where it is loud just pretend you are at a club next to speaker :) just don`t try and dance

Emma19

@Emma19

@lite glad you have an appt tomorrow. Gosh that's so frustrating waiting for that letter eh? Honestly I feel like a fraud since I now feel so well...Although of course I'm pleased I do, have a 10 month old son who is miserable at the min with teething and a cold, I don't have time to feel rubbish myself

bienenstich

@bienenstich

@emma19 I had the unfortunate experience of having all sorts of tests done which came back negative and I was sent packing. 'I could arrange an MRI if I wanted one' my neuro said, which I did a month later. Imagine my shock when I was THEN told about possible MS. I've forgiven my neuro since?. Had another MRI six months later which confirmed MS. One suggestion: if at all possible take your hubby or a friend along to the neuro when you have your next (or any) appointment. You will prob be anxious and therefore four ears (and eyes) are better than two! Or, if on your own, use the recorder on your phone. I went to my first MRI viewing alone (as obviously thought everything was fine) and then thought I was positively riddled with lesions. Those scans can look a bit misleading and my panic prevented me from listening to the neuro properly. At the next app (I took hubby) I realised there were only a couple of teeny shadows....still not ok obvs but still, big phew.

Emma19

@Emma19

@bienenstich thanks for the reply. What symptoms did you have? Thanks for the tip, hubby will be coming with me to my MRI but I'm guessing I'll not know anything anyway from that appt, and neuro are just going to call me with results instead of follow up appt with her then possible lumbar puncture. It was me who told my gp i was worried about MS when I got my symptoms so it won't come as a shock to me anyway. How are you doing now?

bienenstich

@bienenstich

Hard to believe but I had one numby toe. Then pins and needles started in feet and arms and 'loud' buzzing and numbness down one hip...but, strangely only at night. Then some weakness in arm, dizziness before going on Copaxone. Now after seven years I'm changing drugs as some activity, symptoms and a few more lesions. I'm a bit flummoxed why some of you get results over the phone. It's a big deal in my opinion and you want to ask more questions in person and see the scan (and yeah, they do take long to come through).

NicciS

@NicciS

Hi Emma, been following this thread. I've found that you really need to be proactive about pushing and nagging for results etc- I was given an appointment for an 'urgent' MRI which was 6 weeks later, still had no results after 3 months of waiting! Eventually after lots of angry phone calls I went through my GP who chased it for me and then finally I was given a neurologist appointment 3 months after that (which they then tried to put back another 6 weeks!). Once I saw the neurologist I was very happy with the time and attention given, and the same for the service from the MS nursing team, but be prepared to fight your corner. My husband was v helpful in this regard, taking over the Mr Angry routine on the telephone when I'd reached my wits end! Hopefully your situation will run much more smoothly!x

Emma19

@Emma19

Apologies @bienenstich and @niccis I haven't checked here in a while. I hope your change in medication works for you @bienenstich. To be honest I don't mind getting them over the phone, it was me who went to gps etc worried about MS so I don't find it a shock, i see it as having to wait less time to find out! So my MRI is on Thursday and just looking forward to getting it out the way. I had blood results back today via a Cc in a letter to my GP from neuro. Said my ANA bloods came back as moderate positive at 1/640 but I don't really know what that means.

Emma19

@Emma19

MRI was today....went fine. The noise didn't actually bother me it was more how small the space was :O but anyway it's done now. Said about 2-3 weeks for the results... Hopefully can try forget about it till then!

bienenstich

@bienenstich

Hi @emma19 Apologies from me too. Just got back from Mallorca, ahhhhh overdosed on sunshine! Thank you for your message. There's quite a lot going on so aiming for treatment in November. Let's see what happens... Keep us up to date on your results please. We are all here to share and support!

Emma19

@Emma19

@bienenstich I'm not jealous at all at your holiday!! Hope you had a fab time!! What treatment are you thinking? I got my MRI results last Monday...multiple lesions so she said its ms but as protocol will do lumbar puncture and another eye test thing. Had lumbar puncture on Friday there. And I don't see neuro again till 17th Nov...so got a long wait!!!

bienenstich

@bienenstich

Lemtrada. Was really scared of it at first but it's growing on me the more I research and talk to people. Shame you have to wait so long to see the neuro again. But then, you can prepare questions, read up etc. I had a long (some would say that is quick)wait of six months between mri's to confirm MS. But then I was straight in the system with MS nurse, DMD and then an MS group at the local hospital. We had six weekly meet up discussing issues with experts. Some of us are still friends six years later and meet up each month.

Emma19

@Emma19

I'm not up on the treatments at all have no clue what's what! It is annoying since seeing neuro isn't even the specialists so I'll be referred there after so be lucky if I see them before Xmas!! Im not good at this part, I over think if I can't plan!

KoffeeLover

@KoffeeLover

@emma19 I finally saw the neuro for results on the 1st Sept - definitely MS, a few lesions in my brain, absolutely loads in my cervical spine (neck). No doubts at all (and fortunately no mention of LP!!). Now I have to wait for the referral to the MS neuro, MS nurses etc etc to go through - no word yet.......... The neuro gave me a short course of steroids which have improved the situation, although I'm not symptom free like a lot of people seem to be following steroids. But the fact that I have responded to the steroids suggests RRMS, so at least there's hope of treatment that might slow further progression for a while. Hope the referrals don't take too long!! xx