Before diagnosis did any of you suspect or worry about MS or something else?

[trueman]

Just wondering what you thought was wrong before any of you received a lupus diagnosis? What were your worries and fears?

[steadilymovingforward]

I worried about MS at one point but as soon as they said Lupus it all made sense

[trueman]

Thanks! I'm in this boat at the moment. On verge of walking into A&E, getting so confused, balance all over the place still. Left leg playing up, numbness, tingling. Trying to get on with it vey unsuccessfully. Going to have a breakdown I think!

[DaleDiva]

I had MCTD for years and then developed Neuro symptoms but did not connect the 2. I had tingling, numbness and would fall over my own feet. I had problems with speech and memory and had muliple twitches. An MRI scan showed white patches and I was scared I had MS. I was tested for Huntingtons Chorea as well. GP thought I had a brain tumour! Eventually the Neuro and the Rheumy together diagnosed Central Nervous System Lupus. Of all the possible diagnoses Lupus made most sense.

[trueman in reply to DaleDiva]

Hi DaleDiva. Thanks for the response. I have PNH which means I twitch a lot - all the time and it's going insane at the moment unfortunately. Your symptoms sound similar to what I am experiencing but my head is just running in all sorts of directions with it. I haven't even got my neuro appt yet so feel like I am in for a long wait and not sure how long I can wait.. each day I am thinking - I can't go on like this - I need help! What is MCTD? And how is your Central Nervous System Lupus treated? And has it helped? Seen as though I have central nervous system involvement already I am pretty sure something has gone wrong/developed since my 'watch and wait' diagnosis a year ago.. although having said that I have always had similar problems but not as extreme as I do at the moment. Suffice to say my brain/body is not communicating very well.. thanks.

[trueman in reply to trueman]

I have googled the abbreviation of course. Mixed connective tissue ...

[EOLHPC]

Yes: back in the early 1990s when I lost the use of right ankle and developed persistent pinsnneedles + numbness from right foot up leg over knee. Walking with cane etc. That plus various other symptoms, especially fatigue/brain fog/vertigo/the shakes, made my gp say he thought it was MS. He looked v concerned. Referred me to neurology: neurologist v fatherly. I thought: well maybe now I'll find out what my collection of weird lifelong persistent symptoms are about. Tests were negative. Great relief, but the symptoms persisted for years....thought I was just a freak. Finally.in June 2011 I was (re) diagnosed with SLE (turned out I'd been diagnosed as infant etc but no one told me). I'll never say never to possibility of MS or Parkinson's...who knows whether these could develop.....try not to think about it....having enough trouble getting rheumatology to address all my many symptoms. Have had to prioritise what we concentrate on at each 6 monthly appt: as we tackle one set of symptoms, I manage all the other sets as I have for decades (am 60 in oct). The fatigue/brain fog/vertigo/the shakes are due for attention at this sept's appt!

Take care

[copdber]

I had been suffering with depression when I started getting lupus symptoms. My first diagnosis was fibromyalgia next was MCTD and I have to admit most of the time I thought all the symptoms I was experiencing was from depression and I asked my dr on more that one occasion was it all in my head. It wasn't until I went on hols and developed a very distinct malar rash that I took photos of did I believe I had lupus.

[brave]

Hi ,im being investigated for autonomic dysfunction/dysautonomia ,my mri was clear but evidently I have a array of neuro symptoms ,I believe I fit m.s but sore lymph glands and flulike and sunshine intolerance don't fit m.s ,but do lupus ,god knows what happening in my body??I feel your pain ;((good luck