CFS/ME or MS?

Hi everyone,

I’m sure this could have already been asked a million times but I wanted to see if anyone has been in a similar position to me? I always worry that I come across as a hypochondriac but I am concerned that I could have MS instead of my 'loosely diagnosed. CFS/ME.

5 years ago I was hospitalised with Sepsis after having Glandular Fever and Tonsilitis. I was really unwell and when I got rushed to A&E I was at the point of death and another 30-60 minutes and I wouldn’t be here. I took months to ‘recover’ but eventually got back to work. I never felt quite right though. After ongoing GP appointments & blood tests etc about a year after they told me that I had CFS/ME. It made sense at the time as my main symptom was the extreme fatigue.

About 3 years ago my symptoms seemed to get noticably worse. I found that I was having quite a bad urinary incontinence and was fine one second and then the next I was on the brink of peeing myself. This happened a lot and it affected me going to work and out and about. I had tests for UTIs but they came back negative. I also noticed my fatigue getting worse around this point as well as mobility and pain.

I saw a GP and briefly mentioned MS because I had done the dreaded google of symptoms. She did a test by knocking my knee to see my reflex and said it was not worth referring me on the basis of ‘what if’ which I felt was a little unfair.

Fast forward to the last year and a half and it seems to come in waves where I’ll be ‘okay’ for a period of time, which can be a few months and then all of a sudden it seems to hit me. For example now, I am literally exhausted. I nap for a good few hours a day plus then having 8 hours of sleep a night. I went to the zoo for 3 hours on Sunday and had to come back and sleep for 2 hours because I was just beat, this morning I went into town quickly and at 11am I needed to sleep for an hour before work. My back gives me a lot of pain (have been to a chiropractor who said I do have a very small scoliosis) and my legs hurt a lot too. Plus I get random sharp stabbing pains in various parts of my body when I am lying or sitting down. I have notoriously cold feet most of the time and my feet and legs often tingle. Sometimes my hands go really weak too.

My Grandma had MS and I read that it’s possible to inherit a risk of developing the condition.

I know you can get vision problems with MS and whilst I don’t get blind spots or anything like that, in the last 3 years my vision has decreased quite rapidly. They recommend to revisit the optician every two years whereas I have gone every 6-8 months and each time my prescription is worse. Not sure if that is a potential MS thing or just an unfortunate eyesight thing but it linked up with the worsening of my fatigue and bladder issues timing wise.

Thank you in advance

xx

Hi, yeh, theres been a lot going on which does sound quite worrying. Could be ME/CFS or even MS. As youve had a continuation of a variety of possible MS symptoms, I do believe your GP should refer you to a neurologist for a fresh opinion and maybe tests. Just a word re your gran…MS isn’t genetic, but if someone in your family had it, then there is a chance it could be what they call familial I`d be seeing a different GP and asking for a referral.

Gene’s can play a role in MS I.e if you have a parent or sibling with Ms your chances increase however it’s not hereditary. I have 2 siblings with MS and My mother has MS. Not sure what’s going on with me as yet but another 2 of my siblings have probable MS all from the same parents.