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Discussion Starter #1
Have had diagnosis of latent lupus, although I am in no doubt it is Lupus, loud and proud! Have had the usual problems, with joints swollen, fatigue etc.
However, a new a more worrying syptom has raised its ugly head. I was admitted to hospital in November, with a possble stroke. My left side of my face is numb, also left side is weaker in my arm and leg.

Following a CT scan, I was told there was no sign of a bleed, so not a stroke, which was very good news.

My problem is I still have a numb face, and weaker left side! I have been put on yet another drug, pregabalin, which seems to have made no difference at all. Having joined a Lupus group, I borrowed some books from them, and on doing my own investigations, am concerned it is connected to the CNS, and could be vasculitis. If it is, I am worried that I will be left permenantly like this.:sad: I have in the past been in hospital with suspected menengitis.
This is another symptom of CNS involvement.

Any ideas?
 

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Hello there,

I too would be quite worried about those symptoms.

There could be many possible causes but it's not clear to me from your post who you already see in the way of docs.

It is the sort of thing that you really need to talk to a neuro about (in co-ordination with your rheumy).

Another thing I'm wondering about is whether you have been tested for or diagnosed with APS which can cause seizures, blood clots etc. and could very well be behind something like what you have experienced. I would say that if you haven't, it is a priority to get that done.

If you do have APS (around 30% of lupus patients do) it is usually very easily treated.

Can you tell us a bit more about who you see in the way of docs and whether you have or haven't been tested for aps?

bye for now,
Katharine
 

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Cns

Hello,

I would think that you need to request a neurologist referral asap. Of course finding one well versed in CNS Lupus is the problem - maybe someone on here could recommend one - if you state which area you are in.

Sorry to hear of your troubles - your post sounds like a similar pattern to my youngest girl. She has CNS involvement, had a transient ischemic attack (fleeting stroke) last February and recently there was meningitis concern. She had infection behind the roof of her mouth in February and it is still there! The problem is that infection does not show in her bloods. She is now on high dose antibiotics - phew - another close call!

Good luck and take care:)
 

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Discussion Starter #4
Thanks for replying! I see my doctor, and also a rheumatologist. Not seen the rheumatologist since these new syptoms started, but he did not make any comment after the menengitis episode.Tried to see him, but appt not until March!Thought my Dr was ok, until I told him after my reading of books and internet etc, re my symptoms what I thought it was, that he said he would do some research! I am the one left house bound, and in bed for most of the day..... sorry, venting! What can I do? I am not sure re the APS test. WOuld thet have done it in the hospital as a matter of course. I live in Devon, if anyone knows of a neurologist locally?
 

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Hello again,

I very much doubt that the APS test would have been done as a matter of course. It would usually be ordered by a neuro or a rheumy if you had APS symptoms (some GPs do it too).

It sounds like you very much need to be also seeing a neurologist. Each doc has his specialisation and sometimes you need more than one to look after the complexity of lupus. It's time you talked to your GP about a referral.

Keep us posted,
Katharine
 

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Discussion Starter #6
Thank you for your advice, I will be on to my GP first thing tomorrow. I am still shocked that these so called experts, that we put our faith in, really are in the dark with this complex disease. It really is up to us to do all the leg work. It is just a shame we have to, when all we want is someone to do it, and take the stress away.

If it were them in bed all day, so exhausted and wobbly, I am sure something would be done a lot quicker!

Leaves me wondering if I will be able to return to work, or even just to be able to clean my house, and be a proper mum again.......
 

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Hi there,

I'm sorry you are so unwell right now :( and without a firm reason as to why.

I hope the MRI you mentioned in your other post helps uncover what is going on (((((((((((hugs)))))))))))

I was going back through your past posts and noticed you said you were (or maybe still are??) on Salazopyrin. What I'd be questioning is that if your Rheumy thinks you have 'latent lupus' then why on earth did he put you on that drug? Surely it would not help his diagnostic investigations when some people get a drug induced lupus syndrome from taking it :rolleyes: I doubt your current problems can be attributed to taking it though, from what I have read drug induced cases rarely have those sorts of symptoms........mainly they exhibit with positive ANA's rashes and joint & muscle pain, sometimes pleuritis.

Good luck and do let us know how you get along.

love
Lily
 

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Hello, ld. I know you tried to PM me and my Box was full. If I can be any help please try again. Sorry about that.
x Lola
 

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I also vote for a consult by a neurologist, and immediately. If your rheumy can't see you for another month or more, then you need a phone consult. Seriously, this is nothing to delay on.

While many GP's are knowledgeable, you need someone who is experienced in dealing with autoimmune brain issues.

You said you had a CT scan done, but what about an MRI? There are specific patterns to lupus cns which show up on MRI, but not on CT. Again, you need a neurologist who is experienced in dealing with lupus. Not all neuro docs are created equal. I had to go thru a few to find one who knew from where he was speaking. You don't say where you are living, but perhaps someone here on the board knows of one in your area with whom they have had good results.

I have a copy of the Du Bois lupus book. I loaned it to my pulmonologist so that we were on the same page dealing with my lupus/lung problems. I really like my pulm doc and felt it was worthwhile to help him learn how to help me. Perhaps it would work for you with your GP as well.

Seriously, I would be on the phone to my rheumy first thing Monday morning, and make a pest of myself until I got a call back. Were this me, I would be seeking a neuro consult from your rheumy. I would also ask for an MRI to be done ASAP.
Good luck,
Sally
 
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