Awaiting MRI to test for MS :( *Update*

billywilly

teabag29 wrote: »

what is M.E. if you dont mind me asking?

Yes what is ME, you have me wondering. I know what PAD is - I have that, is it similar?

teabag29

No, infact I didn't get a letter as such it was a phone call and got a leaflet through a few days before the scan about MRI scans. I had an MRI in april as i had pain after my gallbladder removal (had a stone stuck) so never thought to ask about my brace with me previously having had one. Goodness knows what will happen now as depending on what neurologist they speak to depends if ill be booked in for a re-scan (the new guy who i spoke to put it all down to migraine). This was an emergency one and took 6 weeks so not sure what will happen now.

My symptoms are still present, the pins and needles are almost constantly there in left side which i can handle but the overwhelming tiredness, confusion and getting my words mixed up is really starting to get me down.

lemontart

billywilly wrote: »

Yes what is ME, you have me wondering. I know what PAD is - I have that, is it similar?

http://www.meassociation.org.uk/about/what-is-mecfs/

I get around 80-90 percent of these and it can vary hour to hour, day to day

http://www.actionforme.org.uk/get-informed/about-me/Symptoms/range-of-symptoms/

lemontart

teabag29 wrote: »

what is M.E. if you dont mind me asking?

http://www.actionforme.org.uk/get-informed/about-me/Symptoms/range-of-symptoms/

http://www.actionforme.org.uk/get-informed/about-me/what-is-me

billywilly

lemontart wrote: »

http://www.meassociation.org.uk/about/what-is-mecfs/

I get around 80-90 percent of these and it can vary hour to hour, day to day

http://www.actionforme.org.uk/get-informed/about-me/Symptoms/range-of-symptoms/

Quite informative. However I note that most of what is said relates to symptoms only, with no real medical backing as to why or how it arises.

I personally would think that you would have great difficulty in proving any of that as it seems that there is no medical diagnosis other than a default one.

Surely evidence will have to be gathered that actually proves (a) the condition and (b) that the symptoms 'claimed' actually exist and are not the figment of the imagination. I can see how easily this could be manipulated by anyone saying that they have these symptoms, but that there is no medical evidence to prove them. So because the DWP can't disprove them then they must exist?

I had a hard enough job trying to convince the DWP that my needs (mobility & care) actually exist. I have provable conditions and even by reference to the NHS website, it states what care and mobility issues would be expected. On top of that my last DLA review (2013) had the DWP write to my GP who in turn gave details of my limited mobility and that considerable care needs were in existence.
Unfortunately for me, none of that mattered or came to anything - I didn't receive one point for anything!

teddysmum

billywilly wrote: »

Yes I have those letters too. If you answer yes to any of the questions you must telephone before the appointment. It appears that they have two different types of MRI scanners.

I think the types only refer to open or closed (Polomint). An internet friend's child got the open version, as it's less scary for a child as mum can sit nearby. They are all based on powerful magnets.


The danger of metals near MRI machines is often sensationally reported; including a wheelchair being dragged from across a room and a hospital worker being pinned across the machine's entrance after walking into the room while carrying an oxygen cylinder. (Can't understand why it took 4 hours to free the latter, as surely switching off the machine, would at least greatly reduce the magnetic force)

teddysmum

teabag29 wrote: »

No, infact I didn't get a letter as such it was a phone call and got a leaflet through a few days before the scan about MRI scans. I had an MRI in april as i had pain after my gallbladder removal (had a stone stuck) so never thought to ask about my brace with me previously having had one. Goodness knows what will happen now as depending on what neurologist they speak to depends if ill be booked in for a re-scan (the new guy who i spoke to put it all down to migraine). This was an emergency one and took 6 weeks so not sure what will happen now.

My symptoms are still present, the pins and needles are almost constantly there in left side which i can handle but the overwhelming tiredness, confusion and getting my words mixed up is really starting to get me down.

I have an MRI every 12 to 18 months and appointments tend to come within 4 weeks of consultation, but this must depend on how busy your hospital is and the number of machines it has.


I'm very surprised that they let you into the scanner, while wearing a brace, as you have to swap clothing for a gown, just to avoid tiny hooks on bras, zips on jeans etc.


Have you had a lumbar puncture, as I had one to rule out MS (before any MRI) ?

teabag29

No i didnt wear a gown either, it was a mobile hut and there was barely any space. Apparently my 6 week wait as an emergency was quite short as they have hundreds on the list. Basically i filled in a form, i explained i had a fixed brace and they said they may have to stop the scan if my brace warms up. They gave me a thing to squeeze and told me if my brace warms up to squeeze it (it never so i didn't need to). I took my bra off but wore my normal clothes.

Ive not had a lumbar puncture yet, the mri was for brain and thoriasic spine with contrast, so maybe thats something they'll do next? Im more concerned incase they write back to the neurologist and its the new guy who reads it and discharges me instead as he seems to think its just migraine (he wouldn't let me explain my symptoms and didn't even read my notes just the left sided weakness bit). I'm not a dr but i know my body and I really don't think all these symptoms can be explained by migraine. The fatigue alone is really affecting my quality of life.

Not sure what to do next, do I ring them or wait or book in with the gp. The thing is I may be moving in 2 months to another part of the country so its unlikely i'll be seen before then anyway.