Awaiting diagnosis in limbo

Hi All

I am new to all this so please bear with me. I am still classed as undiagnosed but neurologist has said he is 80% sure I have MS. I have had brain and spine MRI and both show lesions. I went private initially and had the MRI but now I am back on NHS I feel like I am now in limbo waiting for a lumbar puncture and eye test, bloods etc. My main symptom is Lhermitte’s sign and internal vibrations which are worse when I bend my neck and do any form or exercise even walking. I have suffered with health anxiety for a long time and I think this has mainly been caused by no one believing me including my GP about the random neurological symptoms I have had over the last 5 years as they have been putting it down to anxiety! I started taking sertraline a few months ago and feel it exacerbates my symptoms (tremors etc) even though the Neurologist says it is not the medication making it worse however as it helps my anxiety I have decided having the side effects outweighs the horrible anxiety. The Lhermitte’s and strong vibrations literally started the day I started taking the sertraline which is really strange and I can’t quite believe it’s coincidence even though I have the lesions. Does anyone else have any experience of SSRI’s and worsening of symptoms? Fed up of all the waiting now I just want to know what is going on.

thanks for listening xx

Hi.

Sorry to hear of the situation you are currently in. It is horrible being in that limbo stage and not knowing what is going on. I’m currently in the same boat … although i can’t offer any advice to you as far as SSRI’s and worsening symptoms go, I can just tell you that you aren’t alone. If you ever need a chat feel free to reach out to me!

Take care, and I hope that your next appoitments come soon so you can get a clear diagnosis and look on to the next steps.

Stacey x

Thanks very much! I have just had my Evoked Potentials Test today and got lumbar puncture next week so hopefully will get some answers soon! Same to you if you ever need someone in the same position to chat to!

Make sure that you lie down for a couple of hours after you get back home, a couple days so if you can. Plus have full strength cola and a straw (as you are laying down) it is one of the best ways to avoid the headache you may get. If you do, you have to lay down. I know it’s not easy with kids but you will get over it a lot quicker if you do. Good luck on your LP. Kay ps the caffeine and sugar help.