Your support has really helped me

Thanks Pam,

Reading the criteria for ms is says progression over 1 year, does that mean any progression such as numbness and other sensory symptoms, vision issues, cognitive ect.

Hi Christine. When MS was first suggested to me it was a massive shock as Iā€™d gone to the specialist with what we believed was a slipped disc in my lower back. Because most of my symptoms appeared to be in my lower body they had only scanned that. A physio examined me and requested my referral to a spinal unit where they did a full neurological exam, wandered out, then a very abrupt consultant came in, said he suspected ms and would send me for another MRI.

That was it! I canā€™t tell you how shocked both me and my dad were. I remember walking out, getting half way down the corridor before stumbling back and asking if Iā€™d heard correctly. A few weeks later I had my MRI which showed a disc in my neck that had almost totally blocked my spinal cord off so I had surgery. I was then led to believe that the lesions in my brain were nothing and my problems were sorted out, but although my neck felt better I didnā€™t improve much and had a LP which showed definite ms. Sorry, I know itā€™s long winded but Iā€™m trying to reassure you that even with an added spinal cord injury, my situation shows that we arenā€™t always really disabled when we get diagnosed.

Iā€™m 46 and my symptoms are varied. We donā€™t know which of my symptoms are related to ms or my neck but despite all of my problems Iā€™m mobile around the house just using walls and furniture, I need a stick or crutches outside and when I canā€™t walk itā€™s usually due to pain rather than weakness but not necessarily all the time. I consider my progression to be quite slow and though itā€™s progressive when certain things like continence becomes a problem itā€™s not definitely permanent, I can go months where I have no problems and donā€™t need to catheterise. Symptoms still come and go.

The LP is not as bad as people make out, just remain hydrated and lie flat for 2 hours afterwards. Nobody wants to have ms but itā€™s a huge relief to finally know what the problem is. If you are dx with ms youā€™ll find you get a lot of support, I was left with no after care with my dx of spinal cord injury though my symptoms were the same as now, but with my dx of ms I suddenly had a good Neuro, ms nurse, OT, continence nurse etc. I donā€™t understand it but thatā€™s how it works. I have had a lot of support from the forum and knowing that others have some of the bizarre sounding problems too is a relief, Iā€™m not losing the plot!

Just donā€™t get wound up about the tests, they can be uncomfortable but the not knowing is worse and lasts much longer. If you have any queries or questions, no matter what, someone here usually has experience. Good luck and Please keep us posted.

Cath x

1 Like

Hi Anthony,

Hope you get the answers you need tomorrow.

Christine

2 Likes

Thanks cath,

Getting stressed today trying to locate dates of previous brain and spine scan. GP does not have any record of 1st brain scan so had to go through to ent where a brain scan was done in 2011 due to hearing loss.

Private neuro needs to request these scans which he will find impossible if i dont have dates and they were all at different hospitals.

Numbness is getting worse quickly and even bedcovers causing the same feeling. It can be on one side or both at the same time, but dont have that complete numbness when i cant move a limb so i guess thats a good thing.

Just feeling the mental pressure today of the process of diagnosis,im sure it will pass.

Christine

1 Like