Forum

just want answers what do i do until then?

ok i had mri of head and spine last wednesday, feeling anxious about results. i have phoned neurologist secretary to chase results this morning as i am starting to get tiggling in saddle area and 'restless' legs also last night i had the most scary sensation, whilst sat on the sofa i looked down at my arms and lap i could see them but it was like i wasnt connected??? has anyone every had such a sensation is was very disturbing! almost like it was someone elses body?

Secretary says neurologist will contact one they have report on scans and i should know in ten days....im going crazy here, cant drive think i have cabin fever!

 

Hey coco.

I wake nearly every morning were my brain is telling my body to work,its like my brain is telling my legs n arms to move but they are just not connected.I have to wait for upto an hour before the both of them get in tune and allow me to get out of bed.I have also had numbness from the waist down and been stuck in the bath,my brain says move my legs say no way.

Before this numb feeling or brain and body not connecting I get a vibration/tingling through my lower body.Then yup things stop working.

Now restless leg I can surely say is a pain in the rear,just last night I woke with RLS,I got up and walked around,got back into bed,grrrr I had to keep franticaly moving my legs as if I was on a push bike,eventualy my legs allow me to go back to sleep.RLS can last for over two hours of irritaing vibrating/itchy/annoying legs.I am thankfull it dont occur often,it usaly happens for a few nights then stops,a few months later it is back...

Charlie,x

 

I would say ring the neuro back and ask if he can prescribe something for the things your body is feeling and doing...

Hi Coco

I can imagine that must have been such a scary sensation for you. I'm learning that lots of bizarre things can happen! Not had what you described, but just a few days ago I had an experience where I couldn't taste things & also couldn't count money! It sure is a big learning curve confused.

Regarding your MRI scan results, I've also learned that in this Limboland game we have to be patient. Scan results can take a while before the Neuro gets the results 'cos the radiologists have to type up a report of what they have seen first.

Once you get those results, there could well be other tests needed, so prepare yourself for quite a long wait before a diagnosis is possible. I've been in Limbo for a good while now, so really know the frustration that you feel.

I do hope your MRI results come through extra-quick, as that will be a good first step for your neuro to look at.

Take care & do let us know when you get the results

Bren x

Charlie and bren thank you for the support.

Bren neurologist has said she may want to do a lumber puncture? I have looked at the ?diagnosis critera but to be honest it didnt make much sence! i need plain english. Sorry to hear about your problem with counting, the last couple of days i have been very slow at remembering how to spell?

Charlie i can move but my brain seems to take a while to realise my arms are mine! good idea about phoning ref meds i may ring back tomorrow if not feeling any better.

Thank you again and i will let you know how i get on

Coco

 

Hi coco
I am new to the forum and yours was the first post i saw.
I am in the same boat as you, I had my mri on the 19th and feel like i have been waiting ages already.
I haven’t experienced exactly what you have although last night two of my toes went like rubber, couldn’t feel or move them, weird!
Lets hope we both don’t have to wait too long for our results, being left in limbo is so frustrating.
Take care
Claudette

claudette, sorry to hear you are in limbo to can i ask what symptoms you are having which lead to your mri?

I have a family history of MS, my aunt had it and my mum has it so when i started getting symptoms a couple of years ago i buried my head in the sand. Eventually in January my symptoms had got worse so that it was noticeable to my mum so she made me go the docs. My list of symptoms read like a shopping list so here goes:
Fatigue- don’t feel refreshed when i wake up and have trouble keeping my eyes open when it hits.
Strange sensations on my skin-feels like its grazed but there is nothing there
Wobbly eyes-lasts for a second but is frequent throughout the day
Bowel incontenance?- when i need to go i cant wait
Difficulty with my balance
Dropping things like coins, bottle lids
Mixing up my words or forgetting what things are called
I have a strange feeling in my feet i can only describe it as a prickling tightness.
I was referred to a neuro who examined me and found that i was unsteady on the heel to toe, brisk reflexes on my right side and positive planter reflex in both feet so he ordered an mri.
How about you?

claudette,
here are mine facial weakness, can’t walk in straight line very unsteady gait, fall over if in dark or close eyes, eye sight not right but cant put into words except if things move i cant keep up! washing hair in shower has become bit of a laugh! dropping small things, pretty much like you except I was treated as a stroke at first but then seen by who laughed at treating me as stroke! you sound similar. I to have three family members with ms and looking back some off these things had been happening for a while! I really hope you don’t have to wait to long for results.

hi all,

You might have seen some of my earlier posts from last year and this - the diagnostic process takes a very LONG time sometimes. It did for me and I nearly went demented with all the waiting, knowing I was having more and more symptoms but was stuck in limboland until I had another 'episode'.

I had a second scan in March this year after first one last July and was booked in to see neuro this September to discuss the findings. Well, I went bonkers! Wait six months to find out the results??? So I basically made a complete nuisance of myself. I just could not wait that long. To cut a long story short, they moved the appointment to last week, got diagnosed straight away and am signed up for Campath in July. If I had waited til September, I don't know what I would have done. I went to my GP for advice, called the MS nurses who gave me my neuro's PA's telephone number.

Looking back, I thought once you were on the NHS neuro-conveyer belt, you would be seamlessly moved along and popped out for tests and meetings at various points. That just did not happen. You sometimes have to be really proactive, chasing things up, reminding them you are still here. Having said that, thank god for the NHS! My family in America are gobsmacked that all the services I have had are free, lol.

Hope this helps!

Choochy x

I got my MRI results by letter before the appointment, so you may find out quite soon.

My doctor explained things very easily to me so I would understand,my neuro explained nothing nore explained my MRI results.

Cooco you are very welcome,yes the wait is long and plays on our minds greatly.We just want to know whats wrong with us.You are NOT alone with your struggles and trying to understand medical results,your GP will be able to explain them for you in simpler terms.We just want help while we wait and feel more ourselves.We are here to support you and you Claudette.You will never be alone with your struggles,we are here to help you.My neuro didnt explain my MRI results and I had to ask for meds to help me.Nothing was offered.

Never feel no one cares about you,we ALL care about you.

Choochy I have a friend in the states and my god she has to fight for everything and everything is paper work.She dont have MS but has similar symptoms to MSers.She has neurological disorders.A few days before xmas she eventualy got an electric wheelchair and gave her a quality of life she deserves,her struggles made her want to give up.The states system is wrose than the UK and we both agree if she was here in the UK she would of been helped a lot sooner.We are very lucky we live in the UK.Everything in the states has to be if insurance will cover the costs.

Charlie,x

 

 

thanks everyone so nice to know there’s such good support out there, thank you. seen neuro physio today who has told me to ring neurologist due to some new symptoms so will do that in a bit. hope you are all keeping well x