Referral questions..

A quick update: I have 4 (yes 4!) hospital appointments come through.
2 with the Opthalmiligist (sp!?) on Saturday an MRI on Monday and a Neurologist on Thursday
Once I find out what is wrong with my brain (if they find one!) I will report back.

Good luck with all of them, it’s nice to hear that someone is being seen quickly, although I sure it doesn’t seem that way to you.

Meanwhile......

Just found your thread Scentia
It’s gratifying to read that the wheels have been set in motion so quickly for you. Waiting is agony.
All good luck with your appointments ?

Well I had an MRI on Monday and went to see the neurologist this afternoon. She didn’t have the MRI results as that was done at a different hospital and it wasn’t available?. She did loads of tests, looked in my eyes and announced that she thinks I have Fybromyalgia, not sure where I go from here but she did say as soon as she has looked at the MRI if there is anything to report she will contact me. I feel like I have wasted many hours of the NHS’s time, but as this all stems from an eye test I suppose it probably couldn’t be helped.

That sounds like good news Scentia. It is a painful condition but it could be so much worse.

Hopefully you are relieved tonight Scentia. I think I would be.

It wasn’t a waste , you did the right thing, so pleased that it is better news than it could have been.

You are definitely not wasting NHS time. They don't order MRIs and make appointments unnecessarily.
Good luck and sleep well.

That sounds like good news. No doubt you and your family have paid national insurance in to the system over the years so no need to feel guilty when investigations are needed.

You have absolutely NOT wasted NHS time Scentia in fact I think quite the opposite !

Why (in this day and age of technology) did the consultant not have your MRI ? Quite easy to send from hospital to hospital.

This is what really peees me off . The left and right hand not working together .

I have been thinking about you today and hoped all was okay .

Xx

I keep coming back to this thread, sorry if I am being a pain. I have had the consultant on the phone today who said due to some ‘findings’ on my MRI they are referring me for a Lumbar Puncture. He said it is impossible to give a firm diagnosis until all the investigation have been completed. He did say it is nothing to worry about at this stage and I am sure whatever the findings were are not life threatening but it has made me anxious now. I will desist from consulting Dr Google as I know that will turn up all sorts of scenarios and debilitating illnesses?
Thanks for listening to my anxieties.

You are not being a pain, Scentia. This is a good place to come when worried or seeking advice, or, indeed, just wanting to get something off your chest.
It's good to hear that the hospital are being so thorough and I hope you don't have too much longer to wait to have answers to the questions that will be on your mind. You are bound to be anxious, so keep posting if it helps. ?

Thanks for the updates. Certainly doesn't sound like a waste of time to me! The consultant sounds nice. It was good of him to phone. I hope you don't have to wait long for the lumbar puncture. Keep us posted.

Hi Scentia, I’m joining in as I have fibromyalgia and had similar experience with opticians, multiple hospital appointments, ophthalmologists, orthoptists, MRI etc. over the last year or two. I’ve now been told that my eye problems (vertical double vision in each eye separately and vision ‘bouncing’ to the point I can’t walk and feel very sick) is due to my fibromyalgia. The only reason I can think for a lumbar puncture would be to see if it could be MS, which has many symptoms which overlap with fibromyalgia. Try not to worry, at least they’re ‘on it’ and you will be looked after. Thinking of you as are others on GN.

Just seen the thread and want to wish you well . Do you have someone who could go with you ? It’s often easier to have someone else there to hear what is discussed and take notes if possible .
Wishing you the very best of outcomes . Ps : please try not to consult Dr Google !

I’ve been thinking of you Scentia, thank you for the updates, you are certainly not being a pain. You’re coping with a difficult situation and many of us will want to help and might have experienced something similar.

I’ve had many MRI scans in connection with a tumour which is benign. It’s so good that the consultant is being informative and keeping the investigations moving.

Please keep coming back to vent anxieties and let us have updates.

Meanwhile ?

Hope you soon have some answers.

Oh Scentia don’t apologise, most of us have been in a similar situation at some stage, waiting for specialist appointments. At least they are dealing with you quickly, so less time to sit and worry, I do hope you have somebody to talk to though, if not, there are plenty of willing listeners on here.
I do hope all goes well and your appointment comes through very soon.

All the best

Hello again, I had a lumbar puncture and it proved ‘inconclusive’. They are saying it looks very much like I have Fybromyalgia and they will repeat the MRI in 12 months long with the lumbar puncture to see if there is any progression of the lesions that appear on my brain and any increase in ‘something’, not sure what in my CSF
So I am awaiting an appointment with my GP about where I go from here with the Fybromyalgia.

Oh how disappointingly inconclusive for you. What are these 'lesions'? What's in the CSF? Prepare a list of questions for the GP.

Jane10
The lesions are just bits of white stuff on the image and can indicate MS but can also be there due to age and lifestyle.
I think they were looking for white blood cells in my CSF
I am struggling with accepting that I have Fybromyalgia as I have always thought of it as a mental health issue and and anxiety issue none of which I suffer with, or I didn’t think I did! I have been invited to a support group in my town so they may be able to help me understand it a bit more.

Oh yes there's much more to Fibromyalgia than mental health stuff. See how you get on at the support group. Everyone there will be a bit different but use your judgement as to what's relevant to you. Good luck ?.

There are a number of grans on here who have fibromyalgia or family members have it.
Why don't you start a new thread asking for others' experiences?

That's the first time I had ever heard it described it as a mental condition, although the dreadful pain can trigger depression and low mood.
I do know that other conditions are often associated with it.

I hope you can get support.

I think doctors in years gone by treated Fibromyalgia as a mental health issue but that is no longer the case.Once diagnosed they can come up with some sort of plan to fit your symptoms.Not everyones Fibro is the same I have a friend who still manages two jobs and a home with hers and
my daughter whose symptoms are severe enough to keep her bedbound most of the time.It can cause depression though thats not always the case .Good luck with your appointment ,I hope all goes well for you and they find treatment to suit you,There are Fibromyalgia sites on FB that might be helpful for you