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Interesting article, Lily. Thanks for posting it. I had the MS vs. lupus issue as well, and here we are with a firm dx of lupus now. It's helpful to read as much as possible, so appreciate the post.

Melody
 
Thanks for sharing...I was diagnosed with Lupus in 1995 and then with MS in 1999 by another doctor. I am sure it is Lupus and am now working with a new team of doctors who can hopefully narrow it down and give me the right treatment. Mande
 
very informative

Thanks for the article. I thought I was losing my mind there for a while. I see my neuro on the eighteenth of this month hope he can help. Havn't been officially dx with lupus yet even though all of the labs point to it. Hopefully he can tell me something my rheumy isn't:) :)
 
Thanks lily. I was reading the article again and it all seems to realate to my father also who never ever got answers to his illness before passing away he was ill years and not one doctor told him why but now i have the nuero problems they seem to think it's related ,to late for my father but at least knowing more about the vascular side has helped me understand what we think caused his brainstem stroke.

Love susan x Thanks to you and others taking time to look up these qestions we can get our heads round it a little xxx
 
Hi Lily, how have you been lately? Thanks for the article. I was diagnosed with SLE 10 months ago but unfortunately I never read up on neurological symptoms until 2 weeks ago - i.e. a week after I had all kinds of 'strange' symptoms like tingling and spasms, and apparently nearrly had a TIA. Doctors have since diagnosed CNS vasculitis.
Btw, one of your earlier posts listed anxiety disorder as a CNS symptom. Any idea how that's linked to SLE? These days, my doctors (rheumy and a psych he referred me to) keep asking me whether I'm feeling a lot of anxiety and why....but I REALLY don't think I've been particularly anxious about anything much. I almost feel I MUST have issues that's bottled up somewhere and that's causing my SLE!!
Practically though, the CNS diagnosis just means lots of new meds daily. Sigh....

Love, lizj
 
Discussion starter · #50 ·
Hi lizj,

Things have improved greatly for me thankfully, the symptoms seem to be under much better control after 2 yrs on Imuran/Plaquenil and the odd shot of steroids. I still get some problems moreso in summer with the UV and the heat, but overall nothing like they were.

I think the anxiety mention came when I was talking about the possible 19 presentations of neurological problems that can occur with Lupus in this thread:

http://www.thelupussite.com/forum/showthread.php?t=48000

Fortunately we dont get all of the 19, they are just ways it can present and that physicians should be aware of. The anxiety is something that could be helped by meds to control the symptoms rather than a life threatening situation that needed better control of the disease with immunosuppressants.

I think possibly your docs would just assume you may have some anxiety related to the fact that you have a very serious issue with the Vasculitis..........probably many patients do. I certainly did early on before they worked out a decent treatment regime. After a while though I took a more philosophical view , I was just glad to be diagnosed and felt confident my docs would eventually get it under control with my help in avoiding my triggers. Facing the known is far better than facing the unknown so to speak :wink2: But when you are having seizures and TIA's etc. its pretty hard to remain calm!

Anxiety whether directly related to lupus or as a side-kick to it because of what it means in our lives could certainly make the disease worse. As far as causing it, I think thats probably not true. Many factors go into the mix to end up with Lupus.

I hope you are doing well? It took a good year before I really got things moving in the right direction with the Vasculitis and I'm not totally free of symptoms but its manageable. If I could get rid of my dystonia (movement disorder) I'd be a happy camper :hehe: but I dont think thats going anywhere, we aim for 'reasonable' control there and the pain is being managed so at this point I cant ask for much more, there's so much they dont know about it.

love
Lily
 
Thanks lily,

although most of this stuff goes right over my head so glad my husband will look at it, he will understand it a lot better than me. H e even has to come to the hospital appointments with me else i don't remember a thing.

thanks again every little bit helps.
 
I know that Lupus has effected my psyche and my friends and family have noticed it but I can't seem to prove it. I have difficulty finishing a thought and difficulty finishing a sentence when I am talking and having a conversation. It is also causing me to become increasingly depressed. i am miserable. I am in a flare right now and and Iam in tremendous pain so that is even more stress on me and my family. My doctors are sympathic but I feel like noone else understands. Living a small town makes this Lupus monster an alien that noone has really ever heard of. I hope that some day soon I get close to the end of my fight.
 
Discussion starter · #53 ·
((((((((((((Melissa))))))))))))) :hugbetter:

I hope that some day soon I get close to the end of my fight.
Melissa I hate to hear you talk like that. Do you see a Psychiatrist for your depression, I think you need to come clean with your GP about just how badly this is affecting you. Are you on any meds for the depression and pain..............most of us are and they help a lot. I know for one I would not manage without them and would be thinking similar thoughts to you probably :( :hugbetter:

Please make an appointment to see your doc today, explain how badly you feel and that you need some assistance now. If that fails then please ring a hotline so that you can get someone to help with this severe depression you have.

sending hugs,

love
Lily
 
Dear Melissa, You should not have to suffer like this. Please see about something for your Depression. I have struggled a bit lately and decided to get meds. for it before it became too deep a problem.

Meanwhile, do something for us please and treat yourself to something, a new book,some chocolate, anything that helps you through.

Alos please try to get out when you can, I know a lot of people may not understand Lupus, but some do and it is always good to meet them.
Take Care Sweetheart,
x Lola
 
wow..... so this aseptic spinal meningitis I've been dealing with, along with the loss of sensation on my right side ( except for the severe pain in the right shoulder ) may very well be from the Lupus.....?

It's hard to fight the depression at times. Knowing that you know the word, and not being able to come up with it is sooooo frustrating.
Thank you all. This board is a life jacket in a sea of confusion for me.

Beth
 
Tingly Then Ok Then Numb??

Hello All,

I have had very strange symptoms over the last few years. I had numb hands at night, looked grey and dead. I had a very strange numb foot that felt like I was having electric shocks on it. My skin feels like I have had boiling water poured on it. I get tingling nerves, then painful then numb. But the EMG tests they do always come out normal. The last time the doctor said to go to get the EMG on the day when my symptoms are active.

I wanted to know whether neurological symptoms in Lupus come and go??

Anyone know?

Take care

Smile
 
Discussion starter · #57 ·
Hi Beth,

How are your aseptic meningitis symptoms now, have they improved? :hugbetter:

There are many other much more common reasons for aseptic meningitis before they start looking at it being directly involved with Lupus affecting your nervous system.

Long term treatment with antibiotics is but one cause and I read back and you were on Cipro for 7 months because of Q fever, which you would think would be a more logical explanation? but then I'm no doc ;) :hehe: What did your docs think was the cause?

Lupus can cause it though, thats true.

http://www.nlm.nih.gov/medlineplus/ency/article/000614.htm

Causes, incidence, and risk factors Return to top
With aseptic meningitis a person has signs and symptoms of meningitis, but bacteria do not grow in culture. Many different things can cause aseptic meningitis including viruses, fungi, tuberculosis, some medications, and infections near the brain or spinal cord, such as epidural abscesses.
Coxsackie virus and echovirus, two members of a family of viruses called enteroviruses, account for about half the cases of aseptic meningitis. Other enteroviruses, herpes viruses, and mumps are additional causes. The rate of these enteroviral infections increases in the summer and early fall.
West Nile virus is a cause of aseptic meningitis that has recently spread across the United States. Usually, West Nile virus causes a self-limited (gets better on its own, without treatment) meningitis. Infrequently, it causes a more severe illness, which may include encephalitis (inflammation in the actual brain tissue) or paralysis similar to that seen in polio. These severe forms usually occur in elderly people or people with lowered immunity.
Enteroviruses are spread by hand-to-mouth contact and coughing. To a lesser extent, they also spread by contact with fecal matter. Mumps is spread by coughing or contact with secretions from the mouth and throat, with increased incidence in the spring.
Herpesvirus, both type 1 (herpes simplex or herpes labialis) and type 2 (genital herpes) can cause meningitis in children, especially infants. Chicken pox can also cause aseptic meningitis. Rabies virus causes inflammation of both the brain and meninges (meningoencephalitis). HIV can cause aseptic meningitis, especially soon after exposure (acute HIV syndrome).
Some fungi and mycobacteria can cause aseptic meningitis, although this is much less common. Certain medications can also cause aseptic meningitis, including antibiotics and some over-the-counter anti-inflammatory medications.
Risk factors for aseptic meningitis include exposure to someone with a recent viral infection, exposure to children in a day care setting, being a health care worker, or having a suppressed immune system .
hope this helps,

love
Lily
 
Discussion starter · #58 ·
Hi smile,

Yes some peripheral nervous system symptoms such as you describe can certainly come and go in some patients. In others they hang around and need more aggressive treatment and also pain meds to control it.

love
Lily
 
Lily,
Thanks for the info. I'm so confused about all of this still.....

The Vanderbilt doc did say that the Cipro may have been the cause of the SM, but she wasn't 100% sure - especially now that she thinks the Q Fever may have brought about the Lupus.....?
I go back to see her in a little over 3 weeks, so I'll be sure and ask.
Thank you.
 
Thanks,

This is exactly what my daughter is dealing with. It is really scarey when you are not informed. She has had the
seizures,sagital sinus brain clott,difficulty talking, walking, balance, and psyciatric symptoms as well as most of the common symptoms of Lupus. She has been very serious over the summer and we are least seeing some improvement She was a A student only 2 years ago.

Praying for a remission

Sharon
 
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