Help with symptoms - do you suffer the same?

Hello everyone! I'm new to this site and I hope you don't mind me bothering you all with some questions, but I need to find a few things out. I was diagnosed with lupus in 2009. I also have a neurological condition called chiari malformation (basically, a hernia of the brain). My neurologist claims my symptoms are caused by lupus and my rheumatologist says my symptoms are neurological! They have been playing ping pong with me for a long time, and my health is deteriorating.

What I'd like to find out is:-

1) do any of you suffer migraines (particularly hemiplegic)

2) do any of you have progressive muscle weakness

3) do any of you have nerve pain (with or without loss of feeling/weakness)

4) do any of you have worsening memory or cognitive degeneration

5) do any of you suffer speech impairment, either temporary or permanent

6) do any of you suffer from occipital neuralgia

I'd be really grateful for your input. My neurologist says that my symptoms aren't linked to chiari and my rheumy says these aren't lupus symptoms either. I'm curious to see if fellow lupus sufferes have any of the above symptoms and I'm putting exactly the same post on the chiari chatroom I use.

I'm seeing my rheumatologist on Monday and I'd like to be armed with as much information as possible!

Thanks everyone.

Hadron x

10 Replies

  • Hi ilikefood,

    Welcome to HealthUnlocked and the LUPUS UK community, i hope that you are settling in well.

    If you think it would be helpful i can send you an information pack which explains about the condition and it's symptoms, maybe you could take this along with you on your next appointment with your rheumatologist on Monday?

    I will also include our factsheet on 'Lupus and the Brain' for you too.

    Just send me a private message or an email with your name and address and i will pop one in the post for you today.

    Best wishes,



  • All the symptoms you listed could be caused by lupus - the headaches/migraines, for example, are very common. So are the cognitive impairment and memory loss. Some lupus sufferers have speech impairment too, either temporary or permanent. You will also see a recent post here about nerve pain. Occipital neuralgia can be present too, though neurologists tend to focus more on other symptoms and leave this one for the rheumatologists to diagnose, which doesn't always happen - we have so many symptoms coming on and going off all the time that the rheumatologists tend to stick with the main ones.

    Good luck with your appointment.

  • And having neuro symptoms doesn't exclude a rheumatological cause - lupus, for example. Your two specialists should work together to help you, not against one another.

  • Ilikefood.....I have low end lupus and all of those symptoms above. Except not to any extreme. When you say speech impairment? How bad? I have trouble finding words and say things in my head differently than what I say out loud. My daughter and husband are constantly correcting me. Muscle weakness is when all my symptoms started. I started exercising and got muscle back on my body after a year (slightly hypothyroid too). I believe the brain if damaged in one area can be retrained to work somewhere else in the brain. I don't know what occipital neuralgia is. Hope you can get some help.

  • Hi Ilikefood

    Sorry to read that you've got such nasty health problems!. You can certainly have migraines with Lupus, I do along with muscle weakness and nerve pain. I echo what Purpletop has said your two Consultants should be working together to help you!. They need sorting out!. I hope your appt goes well on Monday, let us know.X

  • Hi likefood I have sle also have multilevel degenerative disc disease (c spine) so have or have had all 6 of your conditions listed I have damaged occipital nerves

    So have the neuralgia you mention have attended physio and pain clinic got to the stage that I can live with it but am limited in what I can do

    When you see doctor be very clear with symptoms and how they affect you have you had MrI or ct scan if not you will need one with dye all the best g

  • Hi! Thanks for all your responses, I really appreciate it. I'm relieved I'm not alone in suffering these ridiculous symptoms but sorry you all have a rotten time with them too!

    I've had MRI scans on my brain and spine, twice each. The only thing revealed was the chiari. My muscle weakness is progressive and gets worse every time I have a chronic hemiplegic migraine (which can last up to 3 months) but fortunately the paralysis is temporary, lasting only for the duration of the migraine.

    During migraines, it's incredibly difficult or impossible to make my mouth move properly to speak clearly but once the migraine's gone, my speech generally is just a tiny bit worse than it was before.

    Each migraine is like a storm that damages my muscle strength a little bit more. I've just finished a 9 day hemiplegic migraine that rendered me incontinent, unable to speak properly and made me have long spells of staring into space, aware of what I was doing but unable to snap myself out of it. Bizarre and terrifying!

    I usually suffer most during the winter - does anyone else find the cold weather worse than the sun? It was fortunate for me that this winter was quite mild so I didn't suffer much but I think a few more bad winters will be very bad news.

    A couple of people on the chiari forum have responded to me, saying they get only a couple of the symptoms on my list. Taking that into account, and the fact that my symptoms are mostly seasonal, I really think it's a lupus problem rather than chiari. I wish my specialists would stop fobbing me off.

    Sorry for the long post!

    Hadron x

  • Hi everyone I've just joined this forum and reading your posts which is very interesting my heart goes out to everybody who suffers with these horrible exhausting illnesses.

    This will be long so bare with me and don't want to bore you all, my symptoms started when I was a teenager and got worse with age and having my children and all the time not knowing what was wrong with me as I didn't get diagnosed until just before my 50th birthday. At 15 I was having incontinence problems and trigeminal neuralgia and you can imagine what an impact that can do to you at 15 on my life.. as if just like magic it disappeared for 4 years but then around the age of 20 I started suffering with my balance and dizzy spells this went on and off for years and I had to learn to just deal with it...

    I met my x and with him I had my 3 children and during my pregnancy's I must admit I carried them quite healthy apart from tiredness and little bit of joint pain but after my youngest ( my daughter ) was born I was trying for another baby and it would not go past 12 weeks as had 10 miscarriages and 1 of them being a hydra form molar pregnancy that i lost at 15 weeks which I had no investigations into or treatment after btw.

    I got so sick of being fobbed off by different doctors I knew that there was something wrong with me that I moved and found a doctor who did listen, I never self diagnosed but I knew it needed investigating as I wasn't right.....Prior to this a couple of years

    back I paid for a private neurologist and He said after the consultation that I need an mri and lots of blood tests saying he suspected ms so with this information and the names of the blood tests he wanted me to have done I went back to my gp and asked to be referred to St Thomas hospital in London as they had a Dr there called Dr D cruz who is a brilliant doctor in all things autoimmune I waited for my appointment to come through and I went to London and after going through everything with him he did a physical a shrimmers test which came back bone dry there and then also he wanted me to have lots of blood waited a few weeks for the follow up appointment with my results and it was confirmed just by the bloods and examination alone I had several illnesses being .....

    1. Sle

    2 discoid lupus

    3 Hughes syndrome

    4 sjogrens syndrome

    5 rheumatoid arthritis

    And he told me I have a heart murmur.

    And after tests at my local hospital also got diagnosed with lupus Paniculitus which I am told is rare...

    I'm currently waiting for an appointment for an open mri as I have trouble laying flat and will get chest pains also get claustrophobic so can't be in that tunnel. But having this open one as testing me for ms as very recently I've been having lots more dizzy spells trouble with speech muscle spasms Co ordination more vertigo and extreme memory loss the ms hug which I can describe as the worse chest pain ever it's an awful feeling like I have got a boa constrictor around my chest I thought it was a heart attack.. problems with my swallowing I get this horrible weird feeling down my back and across the bottom of my spine like an intense pressure on the base of my spine, and I get this jelly leg as if my legs don't belong to my body like the fixed the wrong part of my body to the top almost like they aren't there.........

    I also have fibro myalgia and costochondritis asthma and Gord as well as all the above and on top of that my daughter has several illnesses herself...

    Thanks for listening any imput would be appreciated as would like to know if anyone else has had this jelly feeling

    Sorry I told you it would be long lol

  • dizzy spells

    trouble with speech

    muscle spasms

    co-ordination problems


    memory loss

    jelly leg as if my legs don't belong to my body

    Hi, trueblood 3. Sorry you're having such a rotten time. I get the above symptoms you mentioned (usually during winter). My GP thought I had MS but my MRI ruled that out. Apparently, with MS, the symptoms last solidly for months, whereas I have "on and off" spells of these symptoms over a period of months.

    I hope your MRI helps get the proper diagnosis/treatment you need.

    Hadron x

  • Hello, me again!

    Thanks, Hayley, for the information package you sent me - it arrived today.

    I had my meeting with my rheumy and he wants me to see the main consultant neurologist to see if he (neurologist) can find another explanation for my symptoms. This will be the third meeting with his department... Anyway, if the neurologist can find no neuro reason for my symptoms, then my rheumy will seriously consider a diagnosis of CNS lupus. Not sure how I feel about that, but at least it sounds like the ping-pong match may be about to end...

    Hadron x

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