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Not diagnosed yet but seeking friendly words of advice in the land of Limbo.

Hi there everyone,

Just joined your lovely forum and already quite relieved to be among like-minded people who will hopefully understand how I’m feeling. However, I’ve not even been diagnosed yet - I just really need to talk to someone. Sorry for the long post - TL;DR, I’m stuck in limbo and my undiagnosed symptoms are just really bugging me now.

Longer version: I’m exhibiting a lot of MS symptoms atm and I’ve read an awful lot over the past few months that supports my theory I actually do have MS. I’m no doctor, but this would make a lot of sense. I’m trying hard not to ‘assume’ anything but it’s pretty difficult not to put 2 and 2 together - even if it’s true that MS symptoms mimic so many other ailments. I’m sure loads of you guys Googled your symptoms before being diagnosed too! Sometimes I wish we didn’t live in the Google age - a blessing & a curse it certainly is!

My first main symptom (which started up a few months ago) was a classic: constant pins & needles in my left foot. Beyond that, I’ve felt a sort of ‘electricity’ feeling occasionally sweeping through my leg - I guess it’s sort of like a spasm. When I move my leg too fast, I get an internal jolt. Doesn’t affect my movement - but just feels uncomfortable. Has anyone had that? My most recent symptom is a general shaky feeling - but manifests in my hands every now and then. From what I’ve read, the fact that it only seems to happen when I’m actively moving my hands seems to be typical of an MS tremor. This week I’ve been really intensely thinking about my symptoms (which is most likely making it worse!) and I’m feeling generally weak, worried and shaky. It’s bizarre - on the outside, nothing looks wrong at all with me. When I do my weekly yoga - surprise surprise - the famously calming exercise is where I feel most myself. :wink: But inside, I feel…buzzy.

I finally got a doc’s appointment this week - he made no mention of MS - just sent me for a blood test to check thyroid and lack of B-12 vitamin deficiency. But I’m not convinced. I eat a lot of B-12, and the thyroid idea doesn’t sit quite right with me. Again, I’m no doctor! But I’ve certainly put myself in a strange, psychological place where I can’t seem to think it’s anything else.

I really want to be positive about this whole thing - if it is MS, it’s not my fault and there are worse things out there in the world. But you know how it is. It’s scary not feeling like your body understands you anymore.

I’ve found following Instagrammers (who are all so positive and insanely beautiful! Classic Instagram!) who are diagnosed with MS and are sending out good vibes sharing their experiences really helps, but I also feel weird joining the MS club before even being diagnosed.

Nonetheless, with my symptoms similar to what MS is, I figured just being in the good company of you all would help calm me down :slight_smile: Also, if anyone has any advice on how to ease my symptoms and anxiety, I’d love to hear some thoughts.

Many thanks in advance!

Hi Sophie! Sorry to hear you are joining lots of us currently in limbo land with unexplained symptoms! I know you’ve probably heard it 10000000 but Google is honestly the worst thing you can do! I know this as both a patient and a healthcare professional but it still doesn’t stop me googling every little symptom! I try to stick to reputable sources now though - NHS, MS trust and the MS society have great information that is reliable! It sounds like you are doing all the right things - seeing the GP, getting blood tests for simple easy to treat things that definitely need to be ruled out first! Fingers crossed it is one of those and not MS! But you’re right, a positive attitude is really important too! I also try to focus on the fact that there are treatments available and new research all the time and many people live very full lives! I hope you get some answers soon and don’t let your symptoms stop you doing anything you want to do! My philosophy is to live everyday to the full as you never know what is around the corner - and that’s true for everyone!

Hi Sophie

I’ve just posted a lengthy answer to the post you added to by The Funk DJ. See https://community.mssociety.org.uk/forums/new-diagnosis-and-diagnosis/possible-diagnosis-incoming-symptoms-worse-and-anxiety-causing

Maybe you could look at that rather than me answer you specifically.

Sue