Write* to my gp, sorry about that.
Hi, attention seeking, my backside! i don`t think any of us want this much attention, prodding, testing etc, eh?
They really get my dander up, these tinpot neuros!
luv Pollx
Hi
13 years.
(that is a LONG time)
How hard can it be?
(evidently, hardā¦)
I just try to get on with things but this whateveritis needs to be named.
(before I am dead would be preferable)
Best to all my fellow longterm limbolanders 
Tu x
Yep i agree Poll, we must all be martians to these docsā¦ funny tho i didnāt think i was little and greenā¦i hope to not have to wait 40 years for an answer tho!
xx
Hi guys, Iāve been āumming and ahhingā about posting this as I feel a bit guilty now, but after 4 years of being treated like everything was all in my head and 4 years of every symptom being put down to my ME diagnosis, I was finally diagnosed with MS on Wednesday.
Iām not sure if it is just MS as some of my symptoms are more ME than MS but have been given some steroids to see which kind (RR or progressive) and Iām going to start them in the morning as Iām not going to argue with the neuro if it means I can get some treatment (which is sadly lacking for ME sufferers).
Please donāt give up fighting for a diagnosis, if your body tells you that there is something wrong then there probably is.
Biggest (((((hugs))))),
Mags xx
Huy guys x
I havenāt been well with symptoms for a few years but it was last November that a couple of consultants started mentioning MS - everything then seemed to fit like a glove!
Like lotās of others my MRI showed lesions but in the wrong place - and like others my biggest fear is to be left in limbo for years without a diagnosis.
Personally I think that there should be another ātypeā of MS added to the classifications to cover those people who have MS symptoms & neurological signs but no āphysicalā evidence in the form of MRIās or positive LPās.
I may be being simplistic here but I see no reason not to!!
If everything else has been ruled out - and If it looks like a duck, swims like a duck and quacks like a duckā¦then itās highly likely to be a flippin duck!!!
Iāve heard the description Atypical MS - why canāt something like this be added to the classifications???
That way the neuroās will feel comfortable and people with MS without visible lesions will have a diagnosis and most importantly have support and treatment for their symptoms. They can also then be monitored with MRIās every year or so to see if anything shows up?
Am I being naive??? xxx jenxxx
1 Like
PS Iām going to cut n paste this as a new post cos Iām really interested to know why there isnāt an extra classification xxxxxx
Hi Jen
Like you I have lesions in typical MS locations but also lesions in atypical locations.
Like many I have seen multiple neurologists and had multiple diagnoses including the seeming requisite āanxietyā diagnosis.
Then I saw a consultant who said that all my previous diagnoses were inaccurate based on my clinical/MRI presentation, that what I have is MS but they did not have enough evidence to diagnose. Well, we were told this is MS, but still no diagnosis. On to the next consultant.
Putting aside all the previous, frustrating, soul destroying years of fob offs I appear to be moving forward but its still a long process. Diagnosis appears to be all down to opinion. If a neurologist wants to diagnose, they will whether MS, atypical MS, benign MS (yeah, right what an oxymoron)
IF they dont want to put the time and effort into finding answers, they will discharge you or label you with the most convenient diagnosis for them, even if ridiculously inaccurate.
I have accepted I may never get an official dx but am hoping
Good luck.
Tu
Hi
10 years for me - originally told mini stroke TIA, then full stroke due to migraine, now āneurological episodes due to migraineous phenomenaā which a dr has told me is a nice way of saying āI donāt know what youāve gotā Then I was told low mood/depression which my GP said was nonsense.
Lynn.x.
Wow. Just reading this has made me annoyed for all you who have been in limboland for so long!
I was dx with Fibro bout 3 years ago and was quite happy with that as all I knew was that I didnt feel well.
This time however, I have been ill since end of April, (after a period of huge stress) with many new symptoms (so may be different than Fibro). This time is the first time I have had MS mentioned (ON) so maybe this is the first time I have had symptoms of MS.
I have already seen a Neuro (2 weeks ago) and am having all the diagnostic tests now, so hopefully I will be diagnosed with something.
I really feel for all you people who have been in Limboland for so longā¦ whilst we dont want to be dx with MS, we all want to know what is wrong with us!
Good luck to everyone.
Paula xx
Hi, Iāve been undiagnosed for a year now. I had lesions on brain and spinal cord, positive lumbar puncture. I have to wait for another flare up or change, but Iām still waiting for my initial flare up to ease off. Lynn
hi poll
i had my first episode sept 2010 when right leg and right side of chest went numb was dx with transverse myilitis then had a mild relapse last dec when face and roof of mouth went numb which led to another mri then a dx of rrms 8th march this year
so wasnāt to long between initial symptoms then ms dxā¦
take care
baz