Could this be MS...? Currently diagnosed with M.E/CFS

New diagnosis and before diagnosis
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Since January 2015, my health has been severely affected. At 18 years old I got Glandular Fever and Tonsillitis and as a result, was hospitalised with Sepsis (Blood poisoning/Septicaemia).

Since then, my health hasn’t been great. I am constantly tired and barely have the energy to get out of bed and need around 9-10 hours sleep to even function slightly. There were a lot of symptoms which lead to a ‘diagnosis’ of CFS / M.E. By diagnosis, they pretty much just ruled out everything else.

However, within the past 6-9 months I have felt my health declining. I am in constant pain and tasks like standing up in a shower for 10 minutes and washing my hair feel impossible. I am still able to work (my job is a desk job) but only because I am able to drive. I physically can’t walk anywhere anymore as it either hurts too much or if I take painkillers its usually the fatigue that gets me. The pain I feel is mostly in my legs and feels like a tingling or sometimes prickling sensation. I often get a sharp pain which causes me leg to jerk suddenly and my legs also get very shakey for no reason.

I have other issues such as cognitive function - my memory is terrible, I struggle to multitask, learn new things and I also have problems with my speech where sometimes I just can’t get my words out and have to stop and take a breather and really think about it. Swallowing is also difficult where sometimes I will take a sip, usually of a hot drink, and I can’t make myself swallow it. Although my eyes have been tested a few months ago and there was no sign of any new problems there, I keep feeling like I can’t see properly and things seem blurry far away and near. Sometimes its fine and then other times its not, like it fluctuates.

I recently got accepted for a Blue Badge for my mobility which just proves how affected my walking is, as they don’t just hand those things out willy nilly! The OT also asked me how my eyesight was, which was what made me think she was referring to MS as I know ME and MS seem to be very similar conditions.

I just feel like they gave me the label ME, because its easy and there was no real effort to get any other tests than blood tests done…?

I am seeing my GP on Monday but wanted to get some opinions first.

Thank you :slight_smile:

2

Hi EM

Your case sounds very similar to mine .I was diagnosed with cfs/me with no real testing but I did get refered to the cfs clinic . over the last few years I have had a change in my symptoms and 2 years ago I had an MRI and nerve testing all came back fine .

However my symptoms have changed again and I have been refered to a neurologist

Reading your message I would say you need an MRI scan and a referal to a neuro to rule out other causes besides the cfs/ME label and to look for any potential Lesions on your spine and brain .

Becky x

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Hi, this is quite similar to me, though your symptoms are more severe. I was diagnosed with me back in the 90’s, I’m now 38. I was basically left to just accept that is what it was and no help. So anyway this year I saw a different doc who referred me to m.e clinic, so went through all my symptoms. I have now been referred to a neurologist, but I suspect only because I kept saying that a different doctor who assessed me for benefits was surprised I hadn’t seen one, also because my symptoms don’t all come together is a reason they gave for referring me. Have just had mri, so now a waiting game. If you suspect m.s then try and be a bit pushy. You deserve to be thoroughly investigated. Good luck x

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Thank you both for your comments. I have been to he ME clinic but in all honesty they were useless :confused: Told me everything I already know and then said they would send a group session appointment but haven’t heard from them in 4 months.

GP wouldn’t refer to a neurologist because of the waiting times and demand for them. She didn’t want to clog up the system just for a case of what if…

She has referred me to the Pain Clinic so hopefully they can then send me on to neuro ?

My grandma had MS and my dad is very much against the idea that I could potentially have it - is it usual in younger people as I’m almost 20 & my dad says it usually affects people as they get older?

Thank you :slight_smile:

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I agree with everyone above. You certainly need to be referred to a neurologist for further testing

Julia x

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Hi, have you told gp your grandma had it, def worth mentioning. I think ms is most common in people between the ages of 20 and 40. Maybe try another gp. You need to rule out the what ifs, it’s your life were talking about. Grrr to GP x I agree M.e clinic feels quite pointless, was nice to be listened to for a change though, in my case. Good luck x

1 Like
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No I didn’t mention it - wish I did now! But will definitely tell the Pain Clinic when I go.

Thank you for your help xx