Hello,
I’m in limbo at the moment and really struggling!!! Upon awaiting more appointments, I wondered if you would all be as kind to share your stories/experiences during a relapse?
Hoping you’re all as well as can be!
it is noticeable when i reply to “how are you?”
instead of ok/fine, i say that i feel absolutely crap.
last time i remember thinking ‘bloody hell, just when i thought my ms was under control, this happens’.
carole x
Hi I’m in limbo land as well same as you, going thro relapse. Very emotional, only diagnosed in January. Hang on in there you are not alone lots of love xx
Hi,
thank you for your replies!! I honestly can’t tell you how much I appreciate it!! This site is such a lovely community!
Its extremely tough for me, but to make things harder I have 3 boys 5 years and under.
I believe strongly that that I have ms- I believe my last relapse was pain and clicking in my jaw accompanied by kaleidoscope vision in one eye, exhaustion and brain fog…also spasms in my eyes and ears (yes, my eye balls!)
this time, I’m experiencing pain down my leg and groin with spasms and pins and needles in toes. My hamstrings are so tight walking is a little uncomfortable.I’ve also got tingling in my lips and tongue?? The end of my tongue feels so strange and is twitching along with my chin.
does any of this sound familiar? Again, I’m in limbo and still waiting for a diagnosis. What a lonely place this is!!! 
thank you again all!!!
Thank you so much joolz! I can only imagine getting the diagnosis was bitter sweet! It must be nice to know there is something wrong and it’s not all in your head! It’s all enough to send someone crazy, thank you again and wishing you the best!
Thank you for taking he time to reply, appreciate it! Like I said to joolz below, it must be bittersweet getting a diagnosis! I hope your ms is kind to you!! Thanks again
That makes absolute sense. Very unpredictable! And what kind of symptoms did you have? Thanks for your response!! Xx
Hi! I also think i have a relapsing condition, just dont know what it is. My first problem occurred 2 yrs ago with severe night fever, brain fog, pain ribcage & behind eye and tingling hands. My second “episode” was several months after with night sweats (no fever), tingling hands, brain fog severe fatigue and widespread altered sensations (stabbing, burning, wet skin feel). Fast forward again few months: facial twitches tinglings & pain, pain arm, fatigue pins and needles… mostly everything on left side of body. Strangely, every time during/after relapses, my nails confirm it happened showing deep grooves… My blood tests are all negative, my brain mri was clear, and I am at a loss as to what is going on… All the best x
Hi Tansar
I hope that you have been referred for investigation of your symptoms, currently up will feel that you are in limbo land, please keep on chasing your referral and appointments until you get some answers, good luck! X
People like you give me faith in humanity again. So kind…I’ll definitely do that as I seem to wake up wake up slightly worse everyday. The muscles in my legs are so tight and now my hand are weak and shaky. These appointments are so few and far between aren’t they!. I hope you’re as well as can be. Thanks again xx
Hi, it seems we’re in the same position so I can’t tell you anything of any comfort, I wish I could!!! What I can tell you though is that I had an MRI scan in 2012 which came back clear. In 2015 I had a scan on my pituitary glad which came back clear but something else had been picked up, so I have to go back to neurology again, j have heard that some people with ms had clear MRI scans before a diagnosis, it’s not heard of. So I’ll have another scan soon to check what the abnormality is. If I’m told it’s likely to be ms, I will come back to this post and let you know, so keep an eye out. It will probably be in months though and you not what it’s like in the meantime, maybe push your doctors for another scan! Limbo land is no fun at all!! Wishing you the best and I’ll be in touch xx