Now what?

Following on my 'pushed pillar to post' post. Have seen my GP who confirms I have an auto-immune response throughout my nervous system - inflammation in my CNS apparently but they don't know what. They found O bands in my spinal fluid which may/may not be MS (my neurologist had ruled it out after clear MRIs) and may/may not be Lupus - although the GP now says that it can't be lupus as my ANA test was only 'borderline' and not 'speckled'.

I mentioned 'sero-negative' connective tissue disease and Lupus again. The GP said it's 'early days to say it's anything' and to wait and see if I have another relapse. Which is laughable as I feel shocking as it is. I almost apologised to him that I wasn't limping today or that I wasn't in a wheelchair.

He actually said "What do you want to do now?"

So I asked for anti-inflammatories that don't make me ill and immuno-suppressants. He said no to the latter as I wasn't ill enough!

I asked for a referral to a rheumatologist but he said that it was probably a virus that kicked it all off and I was still recovering and leave it a while.

I didn't have the heart to insist (but now wishing I did) and just left.

Not sure why I'm writing all this, but not sure where else I should post.

23 Replies

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  • Hi,

    Guessing your writing it for support, maybe some info and hopefully it helps to get it off your chest.

    I have been poorly for ages and passed from pillar to post. About to get referral to check Lupus.

    My Neurologist ruled out MS base on clear MRI's & refused to do a spinal tap (though should have done). Who ordered you spinal tap, can I ask?

    I would say its a good thing they have found something that they will be able to hopefully sort for you. I don't have an knowledge about it , I'm sorry.

    Are your symptoms very MS like?


  • Hi

    It's a pain isn't it? My neurologist ordered a spinal test to be done. I'd had clear MRIs (although there were 'white spots' on the brain one) but she said it wasn't indicative of MS. Also my reflex tests were 'indicative of MS' she said. But now I feel as if I'm back to square one.

    I suppose in one way it has shown - finally - that there's some clinical evidence of 'something going on' - my GP's words. But they don't know what.

    My symptoms were MS-like but as we all know lupus is the great mimicker. i.e. tiredness, aching (but for me it was usually on one side), blurred vision, balance problems, UTIs, headaches. The neuro said it was low vitamin D (which was very low) but that is now back up.

    I don't know. Playing the waiting game.

    I guess I was just getting it off my chest.

    Thanks for your reply x

  • I am really pleased your getting somewhere medically, it's one of the biggest hurdles.

    Many of symptoms alike but hit many Consultant brick walls to date.

    Keep updating on here (or me), benefits everyone and you can unleash it too.


  • I don't understand how you can have a clear MRI and at the same time have white spots on the brain (which means brain lesion)? The position and location of those spots/lesions indicate whether MS caused them or the SLE did. Your neuro should have known that.

    As for your GP's wait and see/it's a virus attitude - post viral symptoms should resolve within few weeks. If you constantly feel poorly, then it us obviously something else that needs proper investigation. Ask to be sent to a rheumatologist - it sounds like lupus to me.

  • purpletop - the neurologist said it was due to 'migraines' and my 'age'. Go figure. She said they weren't consistent with MS or Lupus. In fact, when I suggested lupus - and not out of nowhere - only because 3 consultants in my past medical history have mentioned it - she said "No, it's definitely not Lupus".

    I wish I'd said "God, you're good, fancy being able to diagnose someone by looking at them." I always think of the best comebacks afterwards. This was before major tests or before she'd even examined me. Wow...

  • She's a proper healer, that one :)

  • Don't give up looking. I really think it might be Lupus. Its an awful disease and the symptoms are so variable to everyone. Plus it mimics other Immune disorders like RA, Fibromyalgia, MS just to name a few. Insist on the referral to the rheumatologist. Its your body and your right.

  • Hi.

    I'm in quite a similar situation. Just over a year ago following an episode of vision and balance issues and numbness to my face, an MRI showed a white spot on my brain. I had a course of steroids and vitamin D (which was low) and got better quite quickly. So much so that the neurologist thought it may have been a one off. Since then I've had three further bizarre instances and one MRI again showed another white spot but it was not indicative of MS. I'm now on methotrexate but no steroids.

    Four years ago I was ill for months with abdominal pain which was never diagnosed and the year before my brain activity I had months of UTI's however no-one thinks these are related.

    I'm told that I'm in the early stages of something but they don't know what - currently it is an atypical immune mediated neurological response. Like you I feel there is involvement with other parts of my body (my joints recently have started to make a lot of noise and are painful) but unsure as to how to progress. I'm the same when I visit my neurologist, I don't feel as though I can insist to see someone else. I constantly feel 'not quite right' but often not able to articulate why. Sometimes it feels good to vent and get these frustrations off your chest. I know how you feel and you are not alone.

  • May I ask what vision problems you've had, please? I get like a film over my left eye - I can't call it blurriness because I can see clearly, it is just a sensation that makes me rub my eye to clear it. All ophthalmology tests are normal.

  • Hi Purpletop,

    My vision has mainly been affected whereI get both vertical and horizontal nystagmus (where the eyes bounce uncontrollably) and I've had double vision in my left eye only. I sometimes get a burning sensation in my eyes and also have dry skin patches on my eyes. I would say that at least once a day I have a period of time where my vision is just 'not right'. So difficult to describe - like there is a split second lag between my eyes and brain so my balance is affected.

    Whilst I've not had what you describe, everyone is different - it certainly sounds like a problem with the nerve but maybe needs a neurologist to diagnose.

    Sorry I can't help.

  • Thank you, this is useful to know. I have that feeling of the eyes not properly aligning in my head, although the vision is fine. neurologist is only looking at the MRI, which was normal, so no great help. I'll just have to "keep an eye" - pun intended :).

  • That's interesting what you are saying about eyes. Over a year ago I got what I could only describe as a fogginess in my right eye. I could still see but it was as if I was wearing glasses and the lens was fogged up. Very bizarre. My aunt who has MS told me that it was this symptom that was her early sign of MS - her eye 'fogging up'. But for me, it went away after about an hour and the optician could find nothing. I have since had that 'wobbling' - where my eyes seem to go very rapidly from side to side for a few seconds. It can happen any time of the day, but usually if I'm reading or trying to watch the tv. Bright lights also send them giddy. When I've told people this, they assume I must have been drinking.

  • Gosh, please don't scare me with MS, I've just experienced something akin to the bear hug MS sufferers experience - I'm trying hard to believe that lupus can cause similar symptoms, I did all the tests for MS a year ago and nothing showed up.

  • Sorry Purpletop, didn't mean to alarm you with MS. I was kind of relieved when a GP told me that MS is very rare - that in fact most GPs only ever see perhaps one patient with MS in their careers. Lupus has a lot of symptoms that mimic other conditions and that's why its so hard to diagnose.

  • Mine are the same. I've found supermarkets seem to set them off! Either the bright lights, or the fact they are busy or just the fact that you look around a lot. But i rarely come out without having a wobbling "episode". Driving, and specifically driving at night is also a trigger, so I'm currently trying to avoid driving for longer than 15-20 minutes.

    Incidentally, it was thought originally that I had MS; but my neurologist has said it is unlikely, as my brain MRI's are not showing the telltale signs (?!). He hasn't said he has ruled it out completely though, but as we all know Lupus is the great mimic, so that is where I think a formal diagnosis is heading.

  • I know what you mean, Chocolatedawn (good user name by the way!). I've had a number of UTIs - out of the blue, so much so that I just go to the GP's surgery and ask to see a nurse to prescribe antibiotics. I think the problem is that I seem to have lots of little symptoms - dizziness, blurred vision, occasional limp, numbness, fatigue, UTIs, hives etc etc but it's such a long list I feel stupid telling a doctor as if I'm a hypochondriac and I'm never sure what is connected and what isn't, so I leave out the 'little' ones and focus on the 'big' ones. But I never know if the little ones are the ones that make the connection.

    I think the other problem, as I'm sure a lot of people on this forum will understand is that for those of us undiagnosed it's difficult to tell your colleagues and family what's going on without sounding like its in your head. Every so often my right leg seizes up and I limp but it's occasional so it looks as if I sometimes forget! (that's what a neighbour said to me "you forgot to limp today!" - I told them to sod off) But what do you say when you can't work? Fatigue?

    Take care all and again, thanks for the replies and support.

  • Hell who needs enemies with neighbours like that?!

    I am having mri of brain, cervical spine and a lumbar puncture on

    Friday - all ordered by my neurologist after he assessed me and felt sure I have a progressive small fiber neuropathy.

    This was the first time I've felt properly believed since my RA was diagnosed 3 years ago. My rheumatologist described a seronegative RA despite my rheumatoid factor being a lowish positive for at least a year. He says it is non erosive and prognosis might be good. He ignored my descriptions of worsening nerve pain for 18 months so I had to pester my gp for a referral to the neurologist myself.

    You are spot on about having a lot of less pronounced or serious symptoms which means when they are listed they sound rather pathetic. I too limp intermittently - sometimes I find myself limping and am not even sure why so I round on myself as though I were your neighbour! I've diagnosed myself with UCTD now despite the RA being the primary diagnosis - because the neuropathy and dry eyes and mouth have been worse for me than the joint pain for ages now. I expect nothjng from the tests I'm having on Friday and nor does my neuro, my rheumy nor my GP.

    The other possibility they are looking for with me is some immune mediated neuropathy - perhaps CIDP. This can present similarly to MS and is its close relative. It is diagnosed by protein levels in the spinal fluid taken by lumbar puncture. Worth looking up if you have peripheral neuropathy with autoimmunities and some CNS involvement. Honestly the things one learns on this autoimmune journey?!

  • It's interesting what you said about immune mediated neuropathy - my GP mentioned immune related neuropathy, but it kind of went over my head. When I asked what I should say to my Uni (I'm a partl-time grad student with teaching responsibilities off sick at the moment) he just shrugged and said 'post-viral illness'.

    Good luck with the tests on Friday. I found the lumbar puncture not half as bad as I'd thought it would be - just a sharp scratch. However, I had the headache from hell afterwards... BUT I was stupid in getting up the next day and trying to do stuff. You should stay flat on your back for at least 24 hours. Apparently there is a drop in spinal fluid pressure that causes the headache and you have to lie flat so that the hole will seal (you can't see the hole) and restore the pressure. Also drinks lots and lots of liquid. I was told to drink coke.

    I hope you get answers and let us know how you go on.

  • Yes, smellydunlin what to tell work is a difficult one. I had originally told my employer that my consultant suspected Lupus or Vasculitis, as that is what he had said. He recently provided them with a more comprehensive description of the immune mediated neurological response. Which I tried to explain to my boss as my immune system attacking my brain. My boss and all my colleagues have been incredibly supportive though and most appreciate I can "slide off" at any moment - some have seen it in action when I "forget" how to speak.

    My neurologist is currently not recommending the lumbar puncture, though I fear it is on the cards at some point. Having been on medication for about 4 months, I see little improvement, and even possible new symptoms. Thanks for your comments on this though, they are handy things to know!

  • I know I'm fairly anxious about getting the headache from hell that apparently 1/3 get. I fly back home a few hours after the LP so it could be awkward although my GP said he had emailed the neuro to warn him I need a few hours horizontal before flying home. I asked at the airport if I could avoid the usual security queues on a Friday afternoon and they suggested that they earmark a wheelchair for me just in case. Hoping this will prove unnecessary but I can always cancel it if I'm as fine as I hope to be. Also someone has invited us to dinner on Saturday night so had to warn her I might not be feeling well enough. I will just drink water like a fish!

    Your GP seems to be dragging his heels stupidly from where I'm viewing things. Your CNS symptoms should be treated with immunosuppressants if they might be immune mediated and joint pain should take him to a rheumy referral by this stage i would have thought. Pester pester it's the only way! Tx

  • Twitchy-toes - you may be fine. When I had my LP I only laid flat for about an hour and they had me up and about and after a cuppa was told to leave. I was hanging about outside the hospital waiting for my dad and the headache started to hit... I was also stupid in that the next morning I got up, felt okay (I thought the 'headache from hell' was an overexaggeration) and went to Tesco. Yes, I am that stupid. I don't know how I got home - thankfully it was just ten minutes from my house but I staggered in and almost collapsed - I stayed in bed for the next week (which is very unliked me). Lay flat as much as you can, drink lots and keep drinking. I'm not sure about the flight. I felt okay if I could lay reclined so perhaps a reclining seat on a plane might be okay. Let me know how you go on.

    Yes, I'm going to have a word with the doc (or a different gp) next week and suggest immunosuppressants. The whole left side of my body feels inflamed (if that makes sense) like it's swollen - although it isn't. Painkillers just take away the ache but don't really do anything. Ah well...

  • Hi smellydunlin, i too have complained about the left side of my body it also feel inflammed of some sort i do have IBS and put it down to that most of the time but it goes right down my left side in my shoulder dwn my back into my hip and down my leg. It feels like its burning an needs to be streched i get numbness too an seize up when i try to get up most days. Im on immune surpessants for my cronic cutaneous discoid lupus. I always feel not right no energy sore clicky joints and raynarfs developed not lng after being DX. I lay in bed flat on my stomach and strech my legs i get this weird sensation down y back and it goes across the lower back and feel like my legs go numb. Im still waiting to be sent for MRI scan. Im going to ask my GP to refer me to a neourolagist.

  • traceymx - I too get a burning feeling. At first they said it was due to low vitamin D. But now those levels are back up, I don't know what to think. Sometimes it feels as if someone is holding a hot pan to my leg/arm (and sometimes the back of my head). I don't know what to think. Good luck with the referral.

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