Hiya all.
I’m new here as I am currently waiting for test results to see if I have MS. I’ve had a variety of symptoms over the last 5 years which nobody seemed to link and often didn’t take seriously. Reaction to medications, feeling fatigued, shaking, infections, allergies, pain… I had surgery to remove a cyst over my tailbone 2 years ago which caused me constant infections and left a lot of scar tissue before and after surgery. Intermittently I get nerve damage pain which I also had before the surgery. Recently I lost the use of my right arm and began to walk like I was drunk. Following a traumatic week I was found to have a lesion in my spinal cord, hence the tests for MS! This recovered after 5 days of steroids and I feel almost back to normal. I started to walk every day for 40 minutes a couple of weeks ago but have developed burning in the skin and pain in my gluteal cleft over the site of the surgery. Just wondering now if the nerve pain I have been experiencing over the last few years before and now after surgery may be due to MS and not necessarily the cyst I had. Whilst I wait for results, some of what I’m reading begins to maybe join together. Interested in others experience of tailbone area pain. Sorry for the long post .
Alex
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Hi Alex, sorry but I’ve absolutely no idea whether the pain is a result of MS or the infection and I really doubt if anyone on the forum can advise. So far as I know none of us are medically trained- just a mix of people from all walks in life who have MS.
My first symptoms of MS didn’t include any pain and the first ‘major’ symptom was a fairly common one namely optic neuritis resulting in loss of pretty much all vision in my right eye
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Hi,
Waiting for test results is a really frustrating time - and it can take so long!
Like Hank_Dogs, I’m not medically qualified either. It sounds like there’s quite a lot going on in your case and they are doing the right thing by investigating all options.
One thing I would say: I’ve had symptoms that looked very like MS (e.g. foot drop) which turned out to be caused by direct damage to nerves from injury. And that’s even though I have MS as well! So it can be a complex picture. MS symptoms are really varied, and most can also be symptoms of other things.
I don’t know if you can do things to keep yourself mentally and physically occupied with other subjects during the wait. It’s so tempting to google the internet to pieces looking for answers…
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Hi @Hank_Dogs ,
Thanks for your post. I wasn’t looking for a diagnosis but just interested in anyone else that has experienced nerve pain in coccyx area. Just trying to make some sense of why my body hurts in different places and if it’s all related to this possible MS diagnosis.
Many thanks,
Alex
Hi @Leonora ,
Thanks for your response. Yes the waiting is frustrating. I just want to know one way or another now. It’s been 5 years of seeing various doctors for various issues.
Alex
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Hi @Leonora ,
Thanks for your response. Yes the waiting is frustrating. I just want to know one way or another now. It’s been 5 years of seeing various doctors for various issues.
Alex
Well, after another recent spell in hospital and another scan, I’ve just been told I have MS. Shocked but not surprised. Last summer they couldn’t diagnose MS because I only had one lesion and you need two or more apparently to meet criteria. After some double vision, brain scan showed more lesions. Just getting my head around my diagnosis and quite frightened for the future. I don’t see consultant until June so no treatment yet. Just struggling with fatigue and frustrated with not being able to get on with normal things.
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It was double vision that took me over the dx line too. Like you also, not a surprise but it was a shock - strange how both those things can be true. The world looks the same as it was pre dx but something important has shifted.
Good luck as you digest the news.
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Hi @alexbee, understand why it’s still a bit of a shock even if knew an MS diagnosis might be on the cards.
Double vision sounds deeply unfun, as does fatigue and everything else which you’re experiencing currently.
I hope it’s at least been helpful to finally have clarity, especially when you weren’t sure if it was side effects from other surgery etc. But please just take everything one day at a time and be extra gentle with yourself right now.
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Hi @mackenzieblackman ,
Thanks for your response. Yes, just got to take it a day at a time but as someone who likes to ‘do’ things, that’s difficult.
Thankyou for your thoughts
Alex x
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Hi @alexbee,
I’m sorry you have this news that none of us want, and also that’s it’s going to be a wait to see the neurologist.
Try and go gently with yourself if you can in the meantime.
Alison
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