Forum

Limbo Land

Hi everyone,

On tender hooks as I wait in Limbo land once more …

After I was initially diagnosed with MS (O-bands neg) in January, my initial neurologist has retracted his MS diagnosis completely and has now referred me to a MS specialist in London for a second opinion, thankfully he is really caring and I am happy with his care. I have yet to hear what his opinion is - I have an appointment next week.Luckily, I don’t have to wait too long.

I suppose I am asking how people manage to not think about things, while waiting another appointment? I have had some symptoms since my last visit - namely fatigue, vertigo and a strange numbness of half my face (I have trigeminal neuralgia). I am getting used to having strange symptoms most days and trying to manage work, children and symptoms (physio/some medication) and I think I am keeping a positive attitude.

I guess, I just wanted to reach out once more. My husband is brilliant and helping me massively, but it is nice to contact people who have been through this, as awful as it is.

Thanks,

S

Next week is not so bad S. Weekend has begun & you want to enjoy the time with family. I know it’s easier said than done, but I’m presuming by this time next week you will have an answer, 1 way or another. I’m hoping the dx has been retracted for good reason & that you don’t actually have MS. I didn’t have a waiting game, I was dx in 4 days of admittance to hospital, not sure what’s worse tbh, being smacked with it or having the hope it’s not!! Anyway, try not to let the uncertainty ruin your family time, their going to be as worried I expect. Let us know what happens & wishing you all the best Tracey xx

Thank you Tracey.

I am just anxious, this all started in October and I had a previous episode in 2009 (CIS then). I’m tired, I guess that’s all. Thank you for your kind thoughts and words, they really help and I hope you are doing OK.

I am trying to keep myself busy and family time is very helpful :slight_smile:

With very best wishes,

S

Hi Tracey, I just wanted to let you know that I have been diagnosed with MS today after the wait. I wanted to let you know, I really took your advice to heart and had a good week trying to put things out of my head. It really helped. Thank you. I hope you are doing OK. With very best wishes, S

Hi, I am new and not yet diagnosed. I am in my early sixties and have just had an appointment with a neurologist who specialises in ms. I have a lot of symptoms which the neurologist says could relate to ms, or B12 deficiency for which I am awaiting blood test results, I have been referred for an mri brain scan. The Neurologist said I Is rare for someone of my age to be diagnosed with ms - has anyone on the forum been diagnosed at a similar age? I am hoping it turns out to be B12 (my mum also had ms). Thank you.

hi s

oh flippin heck, hope you are accepting it well.

talk to your gp if you are feeling down.

don’t let stress take you down the road to anxiety.

you have survived limbo land and you will survive this.

i kept telling myself the same thing 10 years ago when i got my dx.

the only thing that made me stop believing was the heat this last month or so!

anyway it was great to wake up to a cool day!

you should celebrate, wine or gin, chocolate, cake - have all the bloody lot!

carole x

Hi Flapjack,

I am sorry to hear about your symptoms, unfortunately I cannot help with being diagnosed at a similar age, having just been diagnosed as I am approaching 40. I am keeping my fingers crossed it is good news.

Best wishes,

S

Thank you for your kind words Carole, it means a lot.

It has been tough with the heat, but at least it has been a little cooler the last couple of days.

I am taking it slowly at the moment and as my MS nurse said, I am trying to be kinder to myself, but that’s difficult thing to do though.

Thank you for listening to me.

Best wishes,

S :slight_smile:

Hi Flapjack

Unfortunately, that neurologist is an idiot, we’ve only recently had a load of people saying they’ve been diagnosed with MS in their 50s, 60s and 70s. MS might ‘prefer’ to attack people in their 20s to 40s, but there are children and pensioners diagnosed all the time.

Having said that, B12 deficiency can look like MS, so fingers crossed, that’s what you’ve got. It’s easily managed with injections.

Sue

2 Likes

Hello, I hope you can smile again soon, I have all of the MS symptoms and every week I get worse, but my MRI came back clear my fear is that soon I will never walk or see again but I just keep praying GOD will have mercy on my soul and spare me from that, I have Trigeminal Neuralgia and words can’t describe the pain it causes but I have survived breast cancer so I can’t give up now, I’m going to give this disease my best fight because I owe it to my LORD and SAVIOUR JESUS CHRIST, who died on the cross for me to endure and fight to survive this storm and I know he’s right here with me, so I will win.

Hi Enxsjp,

Thank you for your reply (my apologies, I seem to have gatecrashed your conversation). Waiting for appointments and test results is so frustrating - I also feel in Limbo and just want to know one way or the other so that I can get some treatment and start moving forward with it. Did it take a long time for you to get your ms confirmed?

Hi Ssssue,

Thank you for your response. I am hoping it will be B12 - my test results seem to be taking forever and I still haven’t got a date for the mri so I might phone the neuro’s secretary to see if I can get an update - unfortunately patience isn’t one of my virtues. My Mum was diagnosed in her late forties and the neurologist said this means that I have a slightly higher risk of it being ms. I just want to know what it is so I can sort myself out and get on - which is what my Mum did and she lived to be almost 90!

Best wishes x

Hi Enxsjp,

I have just been reading your previous comments - my goodness you have had a hard time - it must have been terrible for you to have to go through it all twice. You are very brave.

Best wishes x

Hi Flapjack,

Don’t worry about gatecrashing :slight_smile: I do hope you are OK.

Being in Limbo is hard, but eventually, you do get there. It has taken just over 10 months from an acute relapse for a diagnosis, but the neurologist says I have been living with the condition since my first relapse in 2009 (isolated incident). Thankfully, it is under control and I finally understand what has been happening and where the symptoms are coming from. I hope that helps.

Thank you for your lovely comments, but as for brave, I think I just got on with things, but I did have times when I felt really down. I suppose that is natural.

I hope you get some answers, as sometimes that is half the battle.

With best wishes,

S