at my wits end...

I’m not sure why I’m posting this… I’ve never really been good at the whole forum scene but hey ho, what have I got to lose? 3 weeks ago I was admitted to hospital with a conglomeration of bizarre symptoms (most worryingly, pins and needles down one side of my face and swelling of the left side of my face.) I cannot fault the good old NHS in regards to getting tests done promptly. Within 2 days all blood tests, CT scan, urine tests, lumbar punctur, etc were all done… all results came back clear. What a relief, right? My doctor told me I needed an MRI as he suspected MS. I’d never heard of MS before then, which is why I’ve kinda ended up on here baring my soul to the big wide web… I have found much comfort from reading all these posts from people awaiting a diagnosis. I’ve had crazy symptoms for 3 years now and I was starting to think I was going stir crazy… I am so tired and drained with having to tell people ‘I don’t know what’s wrong with me’… I feel like a fraud. I feel like I’m a total sicko - WANTING to be diagnosed. The only other alternative is another 3 years of pain, confusion and thinking I’m completely losing it. I have an appointment tomorrow which will tell me the results of the MRI… I know a diagnosis will take a long time but I’m feeling hopefull that I can find some kind of answers soon.

Hello hun.

Does it help if I tell you I still have a big fat ? on my forehead, after 16 years?

I was mis-diagnosed with PPMS for several years, hence my presence here.

MS was finally and defintiely discounted in 2012.

My current diagnosis is;

spastic paraparesis/cause unknown/could be genetic…but I know of no-one in my family with similar problems.

We can do little else but hang in there, eh?


hi Whatisnormal,

Wish I had some really helpful advice but all I can tell you is I feel your pain I am in the exact same boat as you and it aint pleasant!! When the docs make you feel like a fraud, thats gotta be one of the worst parts, at times I have even started to doubt myself! Doesn’t help matters when your so tired and drained all the time too.

Think most of us on this site are looking for answers in some shape or form…dont give up and make sure you’re heard!!

I really hope your appointment for your MRI results will shed some light for you, please keep us all posted

Karen xx

Hello and welcome.

I really hope your appointment goes well tomorrow and you get some answers.

Its true, that some people do struggle for quite a while before getting a diagnosis…not all though.

My diagnosis was pretty quick. I must admit, it was a relief but once it sank in I did go through a rough patch. I’m ok now though…sort of

Do let us know tomorrow, how you got on

Assuming you have got ms of course…you may not have

Thank you all for replying. My head’s been in a really bad space recently, so sorry for the late reply. The initial appointment I went to following the MRI sent me through ENT… very bizarre. Turns out I have a little sinusitus - good old NHS trying to confuse the sh*t out of everything. Anyway, I went to ENT… then heard nothing for a few weeks regarding neuro or anything regarding my episode. I eventually got an appointment with neuro (which was today) I have been diagnosed with CIS. From what I gather, it was a ‘one off’ flare up… I suppose all I can do is be vigilant in the future if any more symptoms appear, to ensure I don’t get lost in the system. Neuro wants to see me in a few months to do another MRI, so I feel reassured in that sense. Again, it was so lovely to receive responses to my original post. As you all know, it’s a lonely place to be when you don’t have anyone to talk to who understands. Best wishes to you all, Casey