I am undiagnosed as I have described recently. I have many neuro symptoms. My neurologist wants to discharge me at my next appointment in two weeks time. The only test I have had is 2 brain mri’s - clear but some white/grey patches put down to being age appropriate (I am 48).
I try to be cheerful - friends and my GP say they don’t know how I carry on so cheerfully with all that is wrong.
But some days it just hits me.
Like this morning. I knew it was going to be a slow heavy day as soon as I woke up - so rather than getting my husband’s breakfast as I usually do and sharing it with him before he goes to work, I stayed in bed. I got up at 8:30 ish.
Later, a delivery man asked me to sign for a parcel I was taking in for a neighbour - and it took me ages to write my name; the physical writing of it but also the “what comes next?” as I wrote it. Like messages just weren’t getting through. This happens a lot but it is the first time in this present attack and it has upset me; acknowledging that The Old Monster has returned and I am back at square one again. My leg is dragging today and I just feel weird and numb.
Soon I must pep myself up, smile and carry on as I have my voluntary work to this pm.
Hi Lynne, I was given a probable diagnosis 17 years ago and my MRI,s are still clear, most recent in April so I,m still unconfirmed, everything else has been ruled out and I,ve now asked if this could be something more rare, they say no so still in the same position. I understand completely that somedays it just becomes too much and the smile slips, I,ve been like this for the past year, I,ve spent 16 years just trying to get on with it as you do but I think I,ve reached an all time low at the moment, my symptoms are getting worse and I could scream at times with the sheer frustration of limbo, I don,t think the professionals have any idea of the psychological impact our situations have on us. I don,t post on here much but always read others posts. I think at least on here others really do understand, the mask slips sometimes we are human and it,s a lot to cope with, so if you,d like to join in with me with a scream please do : D. Aaaaaaagggggggghhhhhhh. Marie
Can I join in…please? aaaaaarrrrrrgggggghhhhhhh!!!. I’ve had a really awful day today…I’m not dx yet either…although I went back to my GP last week to get some more ‘ampi’ as they are helping a little…and he said that he had had a letter from the neuro. they want to see me again…as the results from one of my blood tests has come back positive…I said to my GP…‘well at least know you know I’m not making it up!’ I’m still waiting for the appointment…and I think If I’ve not heard by the end of this week then I’m gonna phone the neuro up. I just can’t stand all this waiting around. I’ve had so many symptoms…I find walking incredibly hard at the moment…also its very strange but my thumbs (the knuckles) really hurt when I try and do anything…and I mean anything!..Does anyone else get this?
