i want to scream and scream and scream!!!!

after 18 months of my life being turned upside down i remain frustrated and at a loss!!!

originally treat for m.s relapse with i.v steroids.lesions in the brain but no where else.lumbar puncture came back clear so neuro decided not m.s.told me to go home and i would eventually get better.suggested stress related and maybe i should try counselling.also suggested fnd…rubbish i was furious!!whilst i accept i have lived through horrendous amounts of stress.including losing my son at 22 then fighting for custody of his son.(and winning)it would have happened 5 years ago when my lworld really fell apart!i am a counsellor so i am not against counselling i have had years of counselling around my issues.but i don’t need counselling on how to chuffing walk!!!thankfully my gp agreed.

so begins the new diagnosis of severe m.e with neuro symptoms.ok i accepted it.got no better,but accepted they can be very similar.then the m.e specialist started questioning the diagnosis.my neuro symptoms are so severe and so m.s.i now have carers four times a day.

my day starts that i wake up still tired with aching arms and legs,numbness.assisted out of bed and walk about like the tin man from the wizard of oz for about an hour till i can wiggle my hands and feet enough to relieve the numbness and pins and needles.my right side is prominently weaker than left.from the top of my head to my toes.i can scratch my nails down my face and not feel it!the numbness and spasticity last throughout the day.carers assist me to get clothes on if i have the energy!straighten my hair etc.rest for morning then lunch call.rest for afternoon then tea time call.where they assist or at my worst do everything for me.then put to bed.at times i can leave the house,i can get into a shop and hold the trolley like a zimmer frame.at times i can take the little one to school with cruthches and hand rails to assist.i am in no way giving in.i do put my face on every day.get my lashes and nails done.my carers even put my false tan on!!‘how very dare i look alright’!!!grrrrrrrryou see thats all ive got left in my life to what it was.a happy confident career woman with a little one,a teenager and a grown up daughter who is a nurse,before all this.

of course thats a good day or period.in episodes,relapses whatever they are i can not get out of bed without falling!my right leg can drag,and i so heavy.even on normal days if i have managed to get to the end of the street my legs are like lead weights on the way back.

i have shooting pains,a stitch like pain appears at times,like a tight gripping,possible m.s hug?who knows?i have urine urgency,sometimes incontinence.i drop things,i fall forward,i faint.etc etc etc.

so a second opinion was requested,saw the top m.s consultant.

all my reflexes did not respond on the right sisde.no matter what you can’t make that not happen.my stupid brain can’t say dont respond!!weakness to the right confirmed.the muscles in my right eye are deterioating and not responding getting weaker.the light was to far over as was the doctors finger when i ended up in hospital this weekend!!

so basically if they find any more lesions he will diagnose m.s.he correctly states lumbar punctures can come back clear.

so what if their isn’t more lesions?then he has agreed to still see me.he agrees that this can’t be ‘just’ me.there is something else.

so fabthen…i became unwell last week.going into what i call a coma.i just shut down,need to shut my eyes and ignore the world.i am conscious and aware but dont want to respond.so tired in afternoons this happens about tea time.so of to bed early.

friday night my nose,forhead and left side of face go numb.usually its just my right.of to bed early.i wake up with complete facial numbness.my lunchtime carer noticed my left side of mouth was drooping and eye.so of course suspected tia and of to a@e.i remained convinced was to do with my current condition.admitted to stroke ward.told 95% tia.next morning told not.monday morning urgent brain mri.no tumours bleeds etc.found two old lesions and two-three smaller patches.not a neuro expert so sent to consultant who of course is in a different hospital.

left with no drooping but numb face aswell as everything else.

so i am back to house bound on complete rest,frustrated.i want to say kill me now but i don’t mean it.i am not depressed i am situaionally peed right off!!!

somebody help me!!!what do i do now!!!

frustrated from durham!!!

Hello and welcome :slight_smile:

It all sounds like a nightmare - no wonder you’re frustrated!

I’m wondering if you’ve had your spine scanned or had other tests, e.g. VEPs? And what has the MS specialist said about the latest MRI?

It’s great that local Social Services are giving you good support, but are you getting the right meds and regular physio?

Sorry, more questions than answers :frowning:

Hang in there!

Karen x

ive been on here for about a year karen.just changed my name from traceyhotpink,i have spoke to you before.

yes a year ago i had mri.nothing on my spine.the original lesions on my brain.not sure if i have anymore as yet as scans need to be confirmed.i should be having a new full mri of spine and brain in next couple of weeks.

vep also normal.but my neurological have deterioated so m,uch since i saw the first numpty neuro doctor.the m.s consultant hasnt seen the m.r.i and needs to wait for new ones.

i am no meds as no diagnosis.physio.graded therapy.

benefits wise sorted as i was believed and backed up by gp and m.e nurse due to the level of my disability.on a positive note for any one reading my friend has had m.s for 13 years and since being on injections for 12 years she walks better than me!!

if your on highest rate of dla your clearly nearly dead!!(joke)i had to fight to get my care package up but you can do it people.i now have a personal carer 21 hours a week via direct payments.get what you can.

I am so glad I have just read your post, I am like you and just want to scream. I went to another consultant yesterday who was laughing at me . I am like you at my wits end and had enough. I have been like this for 6 years . Most of what you have said rings so true with me.

My new consultant was much better.but my gp asked for an m.s specialist rather than a neuro.so I,my waiting to see if I can get some form of life back.I am currently away for a couple of days break with my friend who has had my.so for 14 years. It’s me that stops us being able to do things.She walks better than me! 13 years of injection and she is still not in a wheelchair.If we went anywhere she would have to push me!tx