Hey everyone. I’m new to all this and feeling quite anxious. A bit of a background on me…I’ve been suffering with random aches and pains and unusual sensations for a few years now but only really took it seriously when one day I couldn’t put a plug in any socket?? Saw my GP who referred me to neurologist (year away!) Went back 2 weeks later as I developed a hand tremor and kept feeling like my knee was going to pop out (felt very tight behind leg?) Appointment was then move forward for 2 weeks time. Saw neurologist who thought it was either fibromyalgia or MS, he prescribed me amitriptyline for odd sensations and pain and arranged MRI for a months time, he said he would call with results. The appointment seemed to go very quickly and I had my MRI last 21/08/19…I am clastraphobic so I left feeling quite dazed and dizzy but I do remember during the scan, I could see them pointing at the screen and they also made a phone call. When finished the radiologist asked when I was next seeing the neurologist and I told him he said he would phone me. He said nothing? I received a letter for a follow up appointment in January 2020. I know its only been a few days but I’m just feeling very confused and can’t stop thinking about it. Sorry for the rambling, feel like I’m going crazy! Sam x
I’m not surprised you are feeling anxious. Having tests, expecting results and failing to get those results is worrying.
But I would expect that you will get a copy of the letter your neurologist (eventually) sends to your GP in which s/he will explain what, if anything, was seen on your MRI. Since you’ve been given a follow up appointment in January, I doubt that anything too scary was found on the MRI. But what you could do is phone your neurologists secretary and ask him/her when you are likely to get the results from the scan.
Don’t worry too much about what you saw the radiologist doing during the scan, I honestly think if there was anything to be concerned about, they’d have told you. Equally, doctors do sometimes say things like ‘I’ll phone you’, then don’t. It isn’t necessarily meaningful.
Try not to be too anxious, I know it’s easier said than done, but there’s not much you can do to change things.
Thank you for your response Sue. Sorry I didn’t mention I got the letter the morning before my MRI had an afternoon appointment, so that’s why I was thinking surely they wouldn’t tell me the results in January lol that would kill me! and as the radiologist asked me when I was seeing the neurologist just confused me more? I guess I’ll just wait for a letter then? I’m terrible for waiting for anything. I’ve been dealing with these strange symptoms for years and I’d feel huge relief just knowing what’s going on, the waiting is just so horrible. Sometimes I feel like I’m going crazy and but since my last doc appointment, I was advised to write everything down and now when I read back I think, something is not right? With all that has happened to me. it’s driving me crazy and I don’t talk to anyone about it as they look at you like your fine or don’t understand so it’s best I keep it to myself… Currently I’m having trouble with my vision, I keep getting blurry double vision going from One eye to the other and my left arm is on fire (well just feels like it’s burning lol) Thank you anyway for your support x
Now you know why i am called CRAZY CHICK lol. I waited 16 years. Did you just have head MRI or both? If you want answers you have to PAY. when i started my journey to see the neuro was like six months back then, so i rattled my money box, and found enough in it to pay for half an hour (back then it was 90.00 half an hour its about 130.00 now), but it was worth every penny. I saw him in TWO DAYS LOL. he has been with me over 10 years and was determined to get me some answers. YOur symptoms are all non specific for MS. I was told this. RRMS is called relapsing remitting. to be diagnosed you have to get passed the macdonald criteria. Guidelines for MS diagnosis: McDonald Criteria - Multiple Sclerosis News Today McDonald Criteria for Multiple Sclerosis (2017 Revision) - MDCalc I was finally diagnosed in 2016 after another VEP test late 2015. I was diagnosed with possible MS to Primary progressive MS lol. great jump. My age was against me. 1951 was a good year, but not when they see that date on MRI films its all down to the persons age never going to be demylinating…events lol. even with bright orbs, oh thats just an arc on the film lol. The radiologist may have seen a bright orb or arc and was just conferring. Like sue said if it was urgent you would have been told. I didnt this is truthful bother with dr google as for me i decided if it was MS it would show itself eventually and it did. sadly its a waiting game when its non specific. learning how to cope and wait is the key. do things, check your diet, eat healthy, go out, fresh air, live your life. burning arm put cold compress on it. it helps. My friend gets this with her fibromyalgia. same as me i have burning legs so bad i could cry its down to the nerve pathways giving out wrong signals. so i confused them even more and make them cold lol. blurred vision is common in people without MS. heat can cause it, check with your optician make sure nothing else is going on with your sight. dont always assume its down to whatever is going on at the time. I was told going blind was down to the heat lol. great doctor that one was. thankfully he retired a few months later. I think we should be giving a coping mechanisim when we start a journey like this, as it can take sooooooooooo long. If its classic MS it takes a few months, non specific symptoms can take years. in the meantime i got given the right to be called a CRAZY CHICK lol. Mind you being crazy over chickens helped too lol. Keep smiling but keep LIVING too. xxxxx
Hi, Waiting for results and living with uncertainty is always an anxious time but having to wait until January is crazy! I would try phoning the neurologists Secretary or even PALs at your hospital to see if this can be brought forward or if you could be put on the list for cancellations. Drs often say they will call with results but I’ve come to realise this is unlikely - there’s a lot of issues with confidentiality for a start as the dr can’t verify who they are speaking to over the phone. After my first MRI I had a Dr tell me she’s call me with my results, she did but call to tell me she had the results but then told me she wasn’t allowed to tell me over the phone so I’d have to wait two weeks for my next consultant appointment! I was so angry, I made a fuss and actually got my appointment moved sooner and that was only 2 weeks to wait, not 5 months!! Thirdly, it’s very easy to read into things when you are anxious - I too was asked when my follow up appointment was by the radiographer and thought “OMG, they’ve seen something” but honestly I think this is just a standard question! And they could have been pointing at anything - you never know they might have been looking at something else entirely on the screen while you were in the scanner!! So try not to over think it, try and get your appointment brought forward if you can and if you experience new symptoms in the mean time make sure you see your GP so that it’s on record and keep a list for when you do eventually see the consultant! It’s a scary time and I can completely empathise - you are not alone in how you feel! I hope you get some answers soon!
Hello crazy chick lol thank you for your advice and kind words Sounds like you have had quite the journey! No wonder you was given the right to be called crazy chick lol Tbh I’m sure they can see quite quickly if an MRI is normal, it is unfair vti make someone wait weeks for a normal result, if they find something then I understand but anyone waiting in limbo land is awful. I try to keep myself occupied in the mean time. xx
Hi Robeean. I think I just got myself into such as state in the MRI causing me to overthink everything. I’m a bit calmer now just trying to distract myself… trying lol. I’ve told myself that after 2 weeks I will call them if I haven’t heard anything. If it comes back normal? Well then that’s a different kettle of fish!..then I’ll probably be back on here lol Ive been told by 3 different doctors/neurologists there’s a high chance I have ms and my physical exams didn’t go too well…but most importantly I know my body and I know something isn’t right? I think now its just about knowing what it is then I can get on with my life. It is nice to speak with others who have been/are going through the same journey. Thank you for the support x
Just as a side note. they are so short on radiologists one of mine was read by someone in AFRICA lol. Yep i remember laughing about it and saying NHS has got so bad now they are sending them to the medicine man lol. It might be easy to read but i can bet you they have a stack of them to get through.
to show you i am not going mad lol, but its been ongoing since before 2004.
sending you a big hug. It is a scary journey, and yes we know our bodies. I knew i was ill not sure with what but i had faith that one day it would really show itself and it did.
for now just try and enjoy yourself as best you can. xxx
Hello, just an update. So I had a nightmare tryy to track down my results, could never get through to the secretary so ended up going to the hospital…but apparently they couldn’t track down the secretary either (that’s if they even have one) waited 45 mins to be told neuro will write to me? Then a nurse gave me a document (which I believe was a printout of previous and new appointments? When I left the reception I noticed it had the words Cancer by the appointments and I had a new urgent appointment coming up in October!..well of course I was in shock. Went back questioned receptionist and said “oh just ignore that!?..” As I was so shoy I just walked out then got home and cried!tried calling gp who had no records from neurologist? Felt hopeless…3 days later receive letter in post saying I have one lesion on the brain but not enough to say MS as of yet…oh and I have a bulging disc in my neck…so erm I guess no cancer!! I’m sure they would have contacted me? Felt some relief but still confused as to what happens next? And to top it off, today is a very bad day for pain…keep getting sudden bursts of pain on the left side if my body like I’m being stabbed and it’s bloody horrible
Hellow anyone there feeling a bit down. Not sure if anyone saw my last message?
Hi Bailey, i’ve not been part of this community long and i’m starting the process of figuring out what is wrong with myself etc. One thing i’ve learned is it can be a long torturous process and frankly, it’s unfair to us all. Having said that, try and remain calm and positive (hated people saying that to me but you realise you can’t control everything but there is always something that’ll give you a moment of happiness in darker times) It’s normal to feel down but don’t suffer in silence please, have you got support around you? Just remember YOU are stronger than you know and aren’t alone. Kind regards,
Hi Raylee thank you for getting back to me. It is horrible not knowing what’s wrong with us, I went to see the GP today because I just felt fed up and I remember a someone mentioned it’s always good to see your gp with new symptoms. Ended up in tears but he was very reassuring. I have an appointment with neuro end of October. This week I have just felt so exhausted. No matter what I do I feel so tired!early nights, naps, exercise (if I can) just ugh! going for a massage this weekend hoping that will help. How are you feeling? x Sam
Well I felt tired and run down when I was at work and I kinda broke last thursday and inadvertedly got signed off for 2 weeks, which didn’t even cross my mind because I was just after relief from my symptoms not to have time off. I got prescribed something to help me sleep something like amptryline, but it made me feel worse if i’m honest like I was always spaced out so stopped taking them. I’ve been out walking every day with the wife because shes off before baby is due. And every day I try to beat my steps from the previous to try and focus on a goal etc. I hope my tiredness was from constant anxiety and worry because I feel more rested now, all be it my symptoms have not improved (4th Week). Just trying to remain positive and busy keeping my mind off it. Have you told anyone what you’re going through? Do you think you need time to gather yourself and recoup?
The trick to taking Amitriptyline is to take it in the early evening. Aim for by around 7pm. If you take it later you end up with a sort of hangover type effect the next morning. But taken in the early evening, the soporific effect has worn off by morning.
If you carry on feeling lousy, it might be worth another try. But I suspect your wife won’t be too impressed if you start sleeping like a baby (should) once you have an actual baby keeping at least one of you awake!!!
Sounds like you’re having a hard time too. Can’t be easy when you’re working too. I made a tough decision to leave my job back in March. Being a manager working 50 or more hours a week was hard going with all my symptoms. Started really struggling and my son needed me, not an exhausted mess of a mother. I have all the time I need to gather myself and recoup but I have to admit working kept me distracted until the evening. It’s hard to speak with people about it as they don’t really understand. My husband is great but there is only so much he can do. I was on amitriptyline too but didn’t really agree with me, also didn’t help much with pain or sensations. Swimming is great, so will try visiting there as much as I can. Congratulations on your soon to be arrival. Being a parent is so rewarding and my son definitely keeps me going. Hope you feel even a little better soon (I know this is easier said than done)