Unknown Diagnosis

New diagnosis and before diagnosis
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Hi,

So starting October 2023, I rang my GP after getting really bad headaches, noted I had previous tingling in hands and legs/feet. Also the left side of my face went numb on two different occasions. So they suspected MS or brain cancer so I was sent for an urgent MRI, few days later a lumbar puncture then seen a neurologist who told me I had some inflammation on my brain and lesions. Have since had EVOKE POTENTIALS, blood tests more MRI’s. Was told they wasn’t thinking it to be MS as no active lesions, my last MRI was September 2024.
So a few days ago I received a letter from the hospital saying they need to monitor the white matter lesions from my last MRI,… and that if I have any queries to contact my specialised MS nurse!

Does this mean they have diagnosed me with MS? only my head is all over the place with confusion after being told it’s not likely to be MS to then recieving this letter.

Can anyone help or have had a similar situation?

I have tried to contact the MS team numbers they provided but I get no answer even after leaving a voicemail to return my call. I also contacted my GP who was also surprised as they had no diagnosis on file or a copy of the letter.

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Hi Sammy,

I have no experience of this and cant imagine how shocking and upsetting that was for you, have you tried to phone the hospital who sent you the letter? I think that might be the best way to go, it might be that they use a letter template and the wrong one was selected? (Fingers crossed) 🫶🏻

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That’s a bit of a shocker and very confusing for you too. I hope you get to the bottom of things soon.

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Yeah I have tried to call the numbers that was on the letter and left voice messages but with no response. Will try again tomorrow. But yes maybe that’s what may have happened but seemed to be personal to me so I’m not sure.