Forum

6 years in limbo

Hi all,

I hope you are all as well as you can be. I haven’t posted on here for 5 years. I’ve been 6 years in limbo and had a period of wellness during 2013. I’ve been relapsing starting to recover then relapsing again .3 times in the last year.

I had an all clear MRI back in 2010, CFS was mentioned. I think because there was no evidence of anything else. I tried hard to get on with life and be positive.

I was again referred back to neurology last June, after a period of foot numbness and weakness in my legs, blurred vision, bowel and bladder issues, sunburnt feeling on my skin on my lower back.

I had another MRI end of December '15 and my appointment to see the neurologist for results is next week.

I feel confined to my home as I’m afraid to walk anywhere in case I trip or fall. I’m seriously getting depressed and I’m terrified that my MRI will be clear again. ( how bonkers is that?) I can’t bear feeling like a hypochondriac any more. The worst part is hiding it from family and friends, because as they say ’ you look great, you look so well’

Part of me feels that surely if my MRI was abnormal then I would’ve heard by now.

Limbo is soul destroying. I don’t believe I ever did have CFS… It never seemed to fit my symptoms.

I just hope this is the end of my limbo journey next week.

Thanks for reading this, I know you people will understand. My hubby doesn’t even like me talking about MS as a possibility so its good to unload here.

Sue

Good luck for next week, hope you get some answers. Let us know how you get on

Thankyou for your kind words and understanding.

I will let you know how I get on next week

Sue x

Hi Sue, I understand and empathise with us, as I was where you are now for a long time too.

I`m 63 now and when I was 45, I started with a very heavy left leg, then trips and stumbles and some really awful falls, due to foot drop. I aso had spasms in arms and legs, bladder and bowel accidents too.

I saw a neuro and he ordered tests…MRI. Had another 3 at later stages, 2 LPs, 2 EMG and blood tests. Nothing ever came back to show why these things were happening.

I was needing a wheelchair part-time, due to no stamina, very weak legs and falls.

On examination I was typical PPMS. I was labelled probable PPMS.

I read up on the subject, sent for literature from MSS. My hubby was annoyed and said I was talking myself into MS. He couldnt understand how i felt inside.

Then in 2010/11 MS was finally discounted for good and HSP is my diagnosis now. It stands for hereditary spastic paraplegia.

Like MS, there is no cure nor treatment…just meds to ease symptoms.

As horrible as MS and HSP are, I totally get you about wanting to end limbo.

Hang on in there Sue.

Let us know how it goes, yeh?

luv Pollx

Hi Sue,

If it was really bad like a brain tumour or stroke you would get a call because it would need dealt with quickly.

MS lesions are not life threatening so you will only here at your next appointment as there is no need to rush.

Today I had my 7th MRI in the last 5 years. I also had one in 1991 and again in 2005 due to symptoms but they were both clear. The first to show “something” was in 2011. More has happened since 2011 but not enough to get an MS DX and a clear LP. Today for the first time I had one with “Contrast”.

Will I get an answer - your guess is as good as mine !

Moyna xxx

Bit of expectation management here (and a wry smile for you as well, I hope): were you ever to be dx with a ‘proper’ disease like MS that people had heard of, they would still complain that you looked ‘great, so well’ etc (i.e. ‘it doesn’t look as though there’s much the matter with you, does it?’) Some things never change, I’m afraid.

Alison