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Discussion Starter · #1 ·
Hi all.

I was intending to just lurk here and pick up info, but I am going through a period of tiredness right now and am fineing it hard to read.

After almost two decades of trying to get a diagnosis of chronic fatigue type symptoms, I had a first :)eek:) ANA test which showed abnormal results. My present consultant (boy, I've had a few :)) said that this may indicate Lupus or a Connective-tissue disease.

I am due an appointment with a Rheumy clinic to make sure what's what. However, having read up a bit on UCTD, MCTD and Lupus I would be very surprised if the ANA blood test was not backed-up by a CTD diagnosis as my symptoms seem to match almost exactly with CNS Lupus.

Now here's the thing: to an extent, I can live with most of the physical symptoms, the arthritis, the muscle pain, the daily stomach churning, etc. They are painful, but I can still get around okay and cope with most physical day-to-days. But I am getting to the stage where I can't live with the hallucinations, the short-term memory loss, the severe brain fog - loss of judgement, decision-making and problem-solving, the fatigue, the dream-batterred sleep, the headaches - the general feeling that I'm on a slow road to vegetableville.

What I would like to know is this: has anyone else sufferred with these types of neuro symptoms and got better or at least not worse, with medication?

PS I've lurked here enough to know that what works for one doesn't necessarily work for all, and I'm not going to try and self-medicate without getting the diagnosis first :) I just really need to know if there's any hope because I feel like my brain is an onion being peeled right now. And I don't know about you, but peeling onions makes me cry...
 

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Hello and :welcome:

I'm sorry to hear you have been so poorly.

I can really identify with how you can live with the "aches and pains" so to speak but not the neuro manifestations. I feel exactly the same way. The two things that get to me are when my mobility is taken away and when neuro things get worse. Fortunately, I don't have the same level of neuro symptoms as you do and no hallucinations.

There are people here who share your neuro symptoms and yes they can be GREATLY improved with treatment. I'm sure some will be along soon with their experiences.

Hang in there, it sounds like you're on the right road :hug:

Katharine
 

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Hello and welcome to the site. It is great that you are being referred to a rheumy. Hopefully he will be able to give you a diagnosis and then offer appropiate treatment. I have lupus and sticky blood and I take plaquenil, prednisolone and aspirin amongst others, these meds have helped improve my quality of life. I hope that your appt comes through quickly. Let us know how you get on.

Take care

Deb
 

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Discussion Starter · #4 ·
Thanks to both of you above for the welcome and encouragement. This does seem a positive place to be.

I hope more people with similar symptoms to me are able to post soon as well.

Errrrr... what's sticky blood?
 

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"Sticky blood" is APS (anti-phospholipid syndrome) or "Hughe's disease". It's simply a question of choice of name.

It is a blood clotting disorder that can lead to clots, sometimes TIA's (mini seizures), headaches or DVTs among other things. It can also have symptoms similar to those seen in CNS but yours sound more specific than those.

Katharine
 

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Hi Lup

I have a diagnosis of lupus with CNS involvement and, yes, the meds. (plaquenil, voltarol and Efexor) have helped - although the plaquenil did take some 6 months to kick in. I no longer have hallucinations (principally moving walls etc) or visual auras (rainbow coloured zigzag lines) prior to migraines. My fatigue has greatly improved and I am mentally firing on more cylinders. I nearly cried recently when my husband said - I've got my wife back! I didn't realise it was that bad.

Having said this, a number of other neurological symptoms (feeling of cold water running down my leg, stabbing feelings in the back of my hand, burning feeling in areas of my skin and dizziness) have recently returned. I spoke with my rheumy about this and was told that this re-emergence is likely due to the warm weather and is a common in those with myelin damage. Thus, it seems that for those with CNS lupus it may not be enough to avoid sunlight - heat avoidance is also advisable.

Hope this info helps.

Merle
 

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Welcome to the site.

There is definitely hope. I don't have the hallucinations but all the other symptoms are very familiar to me. It took some trial and error but I finally have a drug combination that has helped slow the progression of the disease.

Good luck with your rheumy appointment. I hope you finally get an answer for all your symptoms.

Take care,
Lazylegs
 

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Discussion Starter · #8 ·
Thanks again for the replies, especially yours Merle, that was just what I wanted to hear.

I had to give up work a long time ago due to my cognitive problems but I have still tried to do part-time work and bits and pieces. However, I have now got to the stage where I can barely cope with shopping in the supermarket, let alone selling on the internet.

I will try not to get carried away, but I have still not lost hope that if I can get a bit of my brain back, I may be able to earn enough money to give me some independence back.

Funnily enough, warm weather used to be much better for me than cold (I have problems with temperature regulation as well - any drop in temp leaves me colder than others). But I took a vaccine in order to travel abroad in 2002 and had a reaction which landed me in hospital. Ever since my joint aches, fatigue etc have all been much worse and I cope less well with warm weather.

Do these two things (temp problems, reaction to vaccine) sound like Lupus as well?

Edit: I have thrush as well. Is that a common Lupus symptom?
 

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Temperature is a problem for me also. I can't get warm when it is cold and it triggers a flare up of the Raynaud's. The heat just drains me. I turn into this limp noodle that can't function if I don't stay in with the air conditioning.

Many members have had problems with thrush. If you do a search you will find threads discussing the subject.

Lupus patients should not have live vaccines. Not sure if the one you had was live or not.

Take care,
Lazylegs
 

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Like Lazylegs, I also have temperature regulation difficulties. I can feel freezing when its as hot as 28C and have to have a hot bath just to warm up. I can also suddenly find I feel so hot and sweaty that all I want to do is rip off all my cloths - up till now, I have managed to resist doing so except when at home!

I assumed that this is cause of this is damage to / inflammation of nerves of my sympathetic nervous system.

Merle
 

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I thought I had been going round the bend for years as I keep getting words in sentences muddled up and sometimes just parts of words, so half of one word switches with another half of another word. It's got so bad that I daren't speak at meetings any more cos it's embarrassing.

Now having read these posts I guess I'd mention it at next appointment.

I have read a lot of posts and this site is great to exchange info and support each other. Being so new I'm afraid I can't help much but you do have my support in getting a diagnosis and treatment.

Take care
 

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Discussion Starter · #12 ·
Cheers

ALL of you guys have helped me so much already I can't thank you anough. I finally think I may get my diagnosis and tereatment.

Tirenedness will proberly stop me posting for a few days but I will be back.

Thanks again and I which you all well.
 

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Discussion Starter · #13 ·
Hi again

Hope everyone is managing to cope.

I have a rhuemy appointment for Mid-August.

Anything you guys think I should know? Anything I should take? The appointment letter was very basic...
 

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Hi, have a thorough history list of your symptoms and or a symptom diary. It is handy if you can give the doc a copy to keep. Also any photos of rashes etc that you have. A list of questions that you would like answers to as well. Lastly it is helpful to take someone with you to help you remember things. Hope it goes well.

Deb
 

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Discussion Starter · #15 ·
Thanks for the reply Deb

I think I will definitely take someone with me because I'm now at the stage where I can't remember everything and, crucially, often can't remember to ask the right questions.

I saw on one thread here that a first Rheummy appt. can last nearly all day? Is that what I should prepare for? Like I said, the appt. letter was very basic and I guess I could call to find out, but if a day is standard, then that's what I will prepare for.
 

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Hi there,

I wouldn't expect the actual appointment to last all day. A first appointment is often 3/4 to 1 hour but maybe someone was mentioning the "wait" before the appointment and maybe getting bloods done, traveling there...

Taking someone supportive with you who knows you well enough to know how ill you have been is a very good idea.

Katharine
 

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Good luck Deb has given you good advice on how to prepare for the appt. It's a good idea not to wear nail polish or makeup too - they can tell a lot by our skin and nails :) We will be thinking of you :)

love
Lily
 

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Discussion Starter · #18 ·
Thanks for all the advice.

Errrrr Lily, nail polish and make-up is not really a problem for me ...:lol:

Will let you all know how I get on.

This site is really something.

Thanks again.
 

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Whoops, sorry :blush::lol: That's reassuring to know though :rotfl:

Time for bed methinks :hehe:

love
Lily
 

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Lup, Hi and welcome. I was in a terrible state a few yrs ago, didn't make memories for 18months, zero short term memory!! I couldn't hold the digits in my head long enough to make a local phone call....I couldn't think straight, couldn't work, couldn't keep up with conversations, couldn't do anyhting really

I improved without treatment but it never got right. I find the Plaq has greatly improved my neuro symptoms, memory, anxiety even.....if you get the plaq you will hopefully find the same...

I spoke to a rheumy yesterday about UCTD. I have a mix of Sjorens and lupus, he said that a lot of rheumys don't agree that there is such a thing as MCTD and that it is UCTD but that doesnt necessarily mean you don't "have" all of the deseases that overlap ( hope that made sense lol ) in his opinion it's just a qustion of diagnostic language for the amount of markers in the blood and physical manifestations = UCTD Lupus/Sjorens = mild lupus/Sjorens
 
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