Not again!!!

I’m sure a lot of you will know my story so far - well it gets more frustrating! So the long and short of it was that my consultant said yes thought very much it was ms but could possibly be lupus but wanted to do another MRI and check if any changes. Got another MRI done and no changes to the scan but I had experienced some symptoms that again didn’t fit with ms so he was more inclined to think lupus even though blood results have always come back negative for lupus. My consultant then referred me to top rheumatologist consultant who I saw yesterday regarding the possibility of lupus. He did a thorough examination, looked at all the MRI scans which I had on a disc and looked through all the paperwork I had (I’m pretty organised and have kept everything from the start of this last year in April - both consultants have said I’m a dream patient as I have everything with me!) Well he then turned round and said “I’m pretty sure it’s not lupus” and he noticed that I hadn’t been checked for hughes syndrome so wanted me to have blood tests to rule that out. Basically if they all come back negative (which I’m pretty sure they will) then nobody seems to know what to do with me! Frustrated is the understatement!

Join my club…I was mis-diagnosed with MS for years!

I was tested for Hughes and it was negative.

I expect I was also tested for Lupus, but nothing was ever said about that.

Like you, they dont really know what is wrong with me, so I have been given the very strange title of;

idiopathic spastic paraparesis…that means basically, I cant walk and no-one knows why!!!

What`s your mobility like? Do you have spasms, spasticity and bladder problems?

luv Pollx

Karina, There is also the Guillain Barre syndrome - which also mimics MS.

Just to add to your confusion. Came across this at a ‘neuro-physio’ session where there were two people with it - and there symptoms were very like MS.


Mobility is fine now and no spasticity or bladder problems. Had a urine infection which antibiotics didn’t seem to get rid of - probably because they didn’t give me enough supply and too low a dose! Main issues I’m left with are bad headaches, dizziness, skin flare ups after prolonged exposure to sun light, not able to sleep well (although had this problem for many many years), I get chest pain a fair amount too and get flare ups of hair loss. I seem to pick up infections quite a lot (chest and sinus infections mainly)

I think they looked at the possibility of Guillain barre syndrome last year but ruled it out. My consultant specialist that I’ve been under says I’m definitely an intriguing case - I don’t want to be intriguing!!! Lol!

Forgot to mention that on my very first MRI scan I did have a fairly large lesion on the left of my brain and they also saw a tiny one on my right. Interestingly the consultants told me that I am also a rare care in the sense that my brain is actually the wrong way round and my left side of my brain actually controls the left hand side of my body- I was the first case that one of the consultants had ever seen that had this. So I do actually have 2 lesions on my brain - none in my spine and my lumbar puncture did show oglioclonal bands in CSF

I’m astonished that they haven’t done the test for Hughes - I thought it was standard screening for possible MS. If it does turn out to be Hughes, please please please complain - it’s usually only when people create a fuss that things change :frowning:

There are a fair few psychologists I know who would love to study your brain! Did you know that there are some people who become almost “celebrity subjects” - written up in loads of papers after expenses paid trips around the world to do research. Could be fun :slight_smile:

Karen x

Hi Karen - yeah I think that the consultants will end up wanting to do a paper about me - I think I’ve been the only reported case for each of them where my brain functions back to front! Medical marvel they say! I’m pretty sure that a test for hughes was carried out at the very start but it was over a year ago and I’ve had so many tests since I can’t remember them all! I would put money on it being negative and then where do I go from there??! They don’t know what to do with me as I’m such a mystery - especially with all the pet scan previously showing problems and then the biopsy from behind my nose and the unexplained constant enlarges lymphnodes and the lymphnode biopsies which have been clear. This journey seems never ending!! And although the consultants are fascinated by me and say I’m a very interesting challenge for me it’s just frustration now as it seems 1 step forward and 5 back! When will they get to the bottom of it all…!!

Just a suggestion, but I wonder if functional MRI and more advanced structural MRI might help to work out what’s going on? Maybe suggest that your consultants get another expert involved: one who specialises in MRI-based research? They’ll get more papers that way too so that should pique their interest. Kx

Thanks Karen will mention it to them

Hi Karina,

The blood tests for Hughes are not always positive. You can have borderline or false negative results and still have Hughes. It is looking very much as if I have it as well as MS and my blood tests are only borderline abnormal. If you have symptoms consistent with Hughes it might be worth asking for a referral to a haematologist. Have you had a history of migraines or early miscarriage in pregnancy? These can be classic signs of Hughes…

Don’t you hate being a mystery? I never do anything according to the textbook and I puzzle the doctors constantly. If one more doctor tells me I am ‘interesting’ I think I will scream…

I hope you get some answers soon.


God yes I hate being a mystery - it’s fun for the consultants but not for me! I’m sure that the tests for hughes will come back negative and then they won’t know what to do with me! I guess they will look at neuro sarcoidosis and Guillain barre syndrome again!