Just a quick update

New diagnosis and before diagnosis
1

hello, this is just a quick update,

firstly thank you to everyone who has messaged me asking me how things are going, and have I received results,

i rang up neurologist today and my MRI and evoked potentials are back, and a letter drafted for MRI, just waiting to have it checked signed and then sent out, unfortunately the receptionist couldn’t let me know my results as she isn’t medically trained, and my neurologist is on hols until 1st sept, she was a lovely lady and put my mind at ease saying if it was urgent then I would of had a phone call rather than a letter, which is fantastic in my eyes, x hopefully I will find out results soon, I know it may sound weird but the waiting has been a killer, but knowing my results are back and not urgent has been a weight of my mind, fingers crossed this is a good omen, and they will come back clear…

i will keep you updated

thank you again for your kind messages

heidi

x

2

Hi Heidi So pleased things have moved on for you and sound positive.Wishing you all the best keep my fingers crossed for you.xx

3

Hi Heidi glad you are feeling a bit more positive sue

4

Hi Heidi, been thinking of you . Glad it’s not urgent :). Kat xx

5

Thank you everyone,

I’m keeping everything crossed for a good outcome,

been a bad week, numbness in genitals, pain and pressure in thighs and lower back, and bad feet, driving me mad as I’m stuck in and can’t do nothing with my kids… Hoping Ms is dismissed, but I sincerely hope that MRI and evoked potentials show another possible reason for my symptoms x

everyone on here has been absolutely amazing through this all, your support and positivity has keep me going, x

sending love and and best wishes to each and everyone of you x x

heidi x

6

Heidi,

i was wondering of you had received ur results back as I have very painful soles of feet with strange sensations in my heels, plus strange sensation up back of thighs, right calf and bottom area. They initially thought prolapsed disc but paid private for scan and I have no prolapsed disc. Scared and worried too.

newbie Sharon, grateful for advice x x

7

Hi Sharon,

yes results are back, no sign of demyelation on brain MRI or evoked potentials, so I am clear of Ms, I’m not due to see neuro until November but if there is any other news prior I will post on here,

i had suspected probs with disc at the beginning, due to symptoms too, can I possible ask, did you have MRI on your lumbar region, or full lower back…( the bit of your spine that enters your pelvis)

the foot pain is horrendous feels like needles or very sharp objects in your heels, and walking on pebble sensation on soles of feet, if you do get to some form of diagnoses can you please post, as I’m sure it will also help not only myself but many others too, x x x

please keep you chin up Hun, I know it’s hard.

can I ask if you have been able to get an appointment with neurologist yet?

There is so many things that can cause these distressing symptoms, what sort of bloodwork have you had done? How’s your b12 levels? Sorry for lots of questions but so many different test to be completed and it is a long somewhat emotional rollercoaster at times, x

please don’t give up, I’m coming up to a year of this now and completely fed up, but I’m determined to get whatever this is under control and minimise pain so I can live again, x x

its a long process of elimination and next test/process, but eventually there has to be some form of answers x

sending you a massive hug sharon

and I sincerely hope you get some relief and answers soon x

8

Hi Heidi, thank you so much for your reply. Please forgive me for not responding sooner. That’s great news about your MRI, did they suggest a lumber puncture? How have you been recently? Do you still have pain in the soles of you feet?

I paid for an MRI on my lower lumber spine as I have previously had cancer and I was getting worse by the day, so when I was told in the hospital they suspected it was prolapsed disc, but they said my symptoms were not right I wanted to get a scan as they wanted me to wait 6 weeks to try and recover.

I had a lumber scan and the orthopaedic consultant asked straight away if I had a family history of MS and when did I last have a head MRI due to my previous cancer. So I pretty much knew he was going to say the scan was clear. He said I needed a cervical and thorasic scan too but I needed to also see a neurologist. So back on NHS waiting list, got MRI quick due to previous cancer, but results took 3 weeks. A neurologist appointment came through for 8 weeks in Walsall which is 45 miles away so I again had to pay to see one locally, but my results weren’t back! Anyway MRI came back clear apart from prolapsed disk in c6/7 but that wouldnt cause my symptoms. Since then I’ve had a head MRI and waiting results and neurologist appointment on NHS. I’m so much worse with my feet, can barely walk and legs feel heavy and strange like they won’t hold me up. My arms and hands are now so painful, but that comes and goes. I get electric shock feeling in my ankles and had to stop driving for a while as my left ankle was do weak. I also have bad pain on my left ribs which as has been off and on for a year, I have had every blood test going and they are all ok! The worst thing is my feet and they are getting worse every day.

im so sorry for winging I’m just frustrated as my body is giving up and I’ve gone from running 30 miles a week and instructing weekly spinning classes 12 weeks ago to nothing!

how on earth have you managed to put up with it for a year?

Heidi I really thank you for your message and again I’m so sorry for the delay. Take care, thinking about you x xx x

9

Nearly everything you have mentioned is like reading my own story, my feet have got much much worse, my feet are so painful I am sometimes unable to walk, and my mobility is has decreased a lot since I last come on here, my ankles feel like are badly sprained, and swollen like they are too, my feet feel like I have been out in the snow with no shoes or socks on and I have chillblanes… My lower back pain is horrendous in tears a majority of the time, I would be lying if I said I feel better, unfortunately that isn’t the case… I’ve been referred to pain clinic and in process of learning different ways of dealing with the pain, fibromyalgia has been suggested but nothing confirm as of yet, again I am praying it isn’t that either as it is a life long problem too, and I know I couldn’t cope with this pain indefinitely… I am seeing neuro on Thursday so if anything is suggested I will post on here…

i take one day at the time atm, and if I am having a bad day I don’t beat myself up over it anymore… I am trying to put the old hectic me behind me and accept me for what I am now (which is the hardest bit). On a good day I make sure I pat myself on the back to say well done…even if it is only managing to hoover two rooms… This is me, and I can’t change it (even though I may try, usually leaving me laid up for over doing things).

Keep your head up and try and think positive Hun, I know it’s hard and it sometimes feels like what’s the point, but don’t plan to do to much, if your having a bad day, don’t think of you can’t do anything, think you are doing what your body needs and resting to recover… X x x

sending massive hugs, here anytime you need a chat, I’m not on all the time but I will keep logging on to see how your getting on x x x x

heidi x

10

P.s I also have pain under my left rib, like someone has there fingers under my ribs… I haven’t mentioned that before so quite spooky that you mentioned that… X x seriously it sounds like whatever we have is identical, x I wish I was able to send you a picture of how my feet and ankles go, x x

11

Hi Heidi,

Thanks so much for your reply. I really can’t believe how similar things are with us both. I am so sorry that you are much worse, you have described my feet perfectly. I was struggling to describe how they feel as it is like walking on crushed glass but then after being on my feet about half an hour they feel like you say…going outside in the snow with no socks on and the pain is so bad that I can hardly put my feet down. I also have a “padded” feeling on bits of the soles of my feet, the right one is worse. It is like I have screwed up socks under my feet.

I am so sorry about your lower back, that as well as your feet just make it impossible to walk. Have you ever hurt your back in the past? Can I ask did you have a head MRI and Spine MRI? Has anyone mentioned having a lumber puncture?

Im really shocked that they are sending you to a pain clinic, can they not give you any medication to help? you cannot be expected to live with the pain indefinately. I asked if they could give me something but they said no until I know what it is. 2 months ago I used to wake up in the morning frustrated I couldn’t run due to my feet and legs, now I wake up thankful I can still walk a bit, but wondering will I ever feel normal again yet I have only been living with it for 3 months not a year like you.

How do you manage to put the old you behind you? That is what Im struggling with. I am not upset as there are people a lot worse than me, I’m just frustrated.

Can I ask, have you had to wait this long to see a neurologist, is this your first appointment? I really hope he/she can give you some answers.

It is very spooky you have the pain in your ribs too! I went to the chiropractor on and off for a year with my ribs and when I think back to all my niggles which I put down to running and spinning, maybe I had some signs before this happened with my feet.

One last thing which I have been researching and found a few things about is hormones. My symptoms started a week after changing from the combined pill to progesterone only pill. I thought it was the pill, but doctors etc say there is no connection,but it is a big coincidence and from what I have read there may be a connection as changing hormone levels can bring out a flare.

Heidi, thank you again for replying to my messages and being so helpful and making me feel more positive about the change in our lives. I really appreciate it. I will be thinking about you on Thursday and really hope you get some news.

Take care of yourself and I am here if you ever need to talk or vent any frustrations to x x x

12

Good luck tomorrow Heidi, will be thinking about you x x

13

Thank you Sharon, will let you know what is said x x

14

Hi Sharon I have seen neuro and have been diagnosed with fnd… Functional neurological disorder, which mean as a comparison, my structure is ok but I need to retrain the brain… Good example… If your computer breaks down the screen keyboard and tower is structurally ok, but the hardware is broke… X x x so being referred to physio for a slow but hopeful start to my recovery x x he did say there is no quick fix, it will take time and it’s all about small steps x x

15

Hi Heidi, sorry for the late reply but my message wouldn’t send last night. How do you feel about your diagnosis? How did he come to that decision, have you had a lumber puncture? When do you start physio?

my neurologist emailed to say that my brain MRI has come back with white spots but they are not consistent with MS and he will discuss this at my appointment on the 20th. I think he wants me to have a lumber puncture next.

I am thinking bout you Heidi and hope you get some relief from the pain x x x

16

He said MRI was normal and evoked potentials was normal, never been asked to have lumbar puncture… He’s writing to my dr to get a referral to physio so however long that maybe… on my MRI he just said no signs of demyelination nothing else said Hun x x x

im currently researching it, bit frustrating tbh, he said it’s no quick fix but can be sorted in time, I have spoken to someone who is on Fnd support group with same symptoms as me (they can vary same a Ms) and he is now three years into his diagnoses and still in same state"… So confused x x

1 Like
17

Hi Heidi how have you been? How you feeling about things?

I had my appointment with my neurologist today, my MRI of my brain has come back with “white dots” which he said I have more of than what he would class as normal. There is no tumour recurrence which is good news and the white dots he thinks are not suggesting features of MS, however they are a sign of inflammation so he wants to do a lumber puncture and nerve ending tests. He said this may be MS but the lumber puncture will help try and clarify things. I really don’t want to get one done but I have to find out what is going on.

Thinking about you loads x x

18

Hopefully your get answers soon Hun, x x xplease don’t be worried about lumbar puncture, I’ve never had one but I have been told your uncomfortable for a small amount of time then you don’t feel a thing, I do believe you need to drink plenty to avoid having a bad headache after, x x nerve testing is painless, can be a bit uncomfortable, but manageable, x x Sharon I really wish you all the best…I have had a few bad weeks, but on a good note I have become a nanny as of yesterday…I have a beautiful grandson little Ronnie, and he is adorable, I managed to get up hospital yesterday and had a cuddle, so worth all the pain I’m feeling today… X x the inflammation could be a infection sweetheart, but by the sound of things your neurologist is pretty thorough, so your in good hands, x. X

keep fighting and your get through this.

when you have your dates through please let me know and I will make sure I’m here for support.

try and relax as it can take a few weeks after lumbar puncture for results I believe, same with nerve testing… So unfortunately it’s still a waiting game… X x

im hoping everything will be ok, and if something comes back on these tests, your have clarity, and then plan your next move to fight for the results you need.

your strong and I know you can do this…it’s the fear of the unknown… But it could mean answers, which is a relief no matter what they maybe.

sorry haven’t been on regularly I will make sure I check more frequently for you…

im here Sharon, be strong and your almost there, think of it as an end to a shitty year, but 2016 could be your year, results, action plan, and hopefulness x x x

thinking of you

heidi x x x

19

P.s I’m still waiting to hear about referral to physio, I’m trying to meet up with a couple of people who has fnd, hopefully fri, feeling quite lonely and isolated with this atm, just given a website to read and left to it, no support, or anyone I can go to, now everything is blamed on fnd by Dr, even bowel problems I had for years. Bit annoying, but I will get through this, this is a blip x x