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I thought some of you with neurological presentations of Lupus might find this article informative.
It's fairly indepth but I found the info on MRI and EEG investigations and the diagnostic dilemna between MS and Lupus interesting. There are several here who are still in limbo with their neuro problems so I hope it helps.
http://www.emedicine.com/neuro/topic360.htm
love
Lily
Pandora
04-29-2004, 02:16 AM
Good stuff
Thanks Lily!
Lilly,
That is a very informative article. Pretty technical. I wish I could give it to my doctor.
I don't understand even a 1/3 of it. That is why I would like him to translate thanks for thinking of us,
Jamie :shrug:
Anisah
04-29-2004, 04:34 AM
Thanks Lily,
I went through years of the MS vs Lupus thing myself and in the end it's Lupus for me. :coffee:
So far I have official dx's of encephalopathy, mononeuritis multiplex, cranial neuropathy, and vasculitis. I also have questionable dx's, i.e. depending on which Neuro you talk to :rolleyes: , of a small stroke and optic neuritis.
The neurological involvement in Lupus can be extensive. :(
Great article, thanks.
take care,
Anisah
:flowers:
Mullingar Girl
04-29-2004, 12:35 PM
:wave: Thank you Lily.The doctor who recognised my symptoms all those years ago was spot on. He told me at the time that although a differential diagnosis was considered, the evidence with the bloods was conclusive.So, Lupus it was.I had a very close school friend who died with complications of M.S. at a very young age, so I condidered myself fortunate to have something else instead. My neurologist works hand in hand with my rheumatologist to keep me ticking over. I realise that not everyone is so lucky with their doctors, but I remind myself that it has taken many years to get to this stage.So, to those who dont have this back up, keep seaching and educate yourself and the public about your symptoms. Recently I wrote to my member of Parliament requesting more research in the U.K. and she passed it on to the health secretary.One small voice perhap.......but who knows. :nurse:
Kathleen.
The neurological involvement in Lupus can be extensive
So true!
I'm so glad I have a good team of docs now. The Neuro I got to after a dud neuro hasn't even blinked and eye about my wide and varying array of neuro problems. The first neuro wanted to rule out MS and anything after that was 'too complicated' and messy to deal with! She did not document half of what I told her or I presented with during that first consultation which led to an uneccessary delay in diagnosis for me. It's extensive and baffling to those Neuro's who are 'uninititated' as far as the complexity of Lupus goes.
So once again it pays to educate ourselves to make sure we are getting the care we deserve. If one neuro is baffled or seems unconcerned about 'unremarkable or unclear' diagnostic tests then please try and find one who will look at the big picture.
love
Lily
Jirel
04-30-2004, 01:00 AM
Thanks, I copied over into a Word document so I can both have it to review and print it if I need to.
CaliGirl
04-30-2004, 02:34 AM
:nurse: Great article...took me a while to translate it for myself, but worth the effort. Thanks for sharing. I just made a document and filed it. Brenda
Angie E
04-30-2004, 05:03 AM
Very interesting Lily! Thanks!
Angie E
singa1
04-30-2004, 09:50 AM
Yeah some goood stuff allright I couldnt stop reading it. Thanks alot
Much Love,
Rachel
Vanilla65
05-01-2004, 05:47 AM
Thank you Lily for the information. I've printed it out to hopefully get one of the doctors I've been seeing the past month to help me get dx.
Anisah, I have had a stroke also. It happend after falling several different times and braking my left leg. Since then I have fallen more and almost broke my right leg. I notice I fall more when I get tired, stressed out, or both.
I am so glad to have found ya'll and this website. For years now I've been thinking I was going crazy (or was already crazy) with no one to understand. :wacko:
Cher1970
05-01-2004, 05:46 PM
thank you so much that was exactly what i was looking for :D
Excellent link, Lily.
I have pinned it so everyone will have a chance to read it.
The thread isn't locked, so replies are still possible.
susan01
05-09-2004, 03:02 AM
Thanks Lily. I'm half way done with it, am printing it, and will finish it while I take a bath! I love emedicine for info. It almost seems like every neurological symptom could be seen in either disorder. I found the brief discussion of MRI patterns interesting. Susan
SSlar99
05-10-2004, 05:14 AM
Thanks Lily :)
I just finished reading the article link. Very informative. I have saved it I plan on highlighting some focal points of the article and bring it to my new rhummy apointment.
Thanks a bunch!
Susan :)
Melody
05-25-2004, 12:40 AM
Thanks Lily for the link. :flowers:
alobreto
05-26-2004, 10:02 PM
:) Thank you for this link! I read the article from beginning to end and found it very informative.
alobreto :thumbs:
luppylu
06-02-2004, 03:06 PM
:highfive: THANKS, LILY
This is much needed info.
Sheila
Angel F
06-09-2004, 05:04 AM
Thanks, for the interest between MS/Lupus. My good friend has MS and had to go to Ireland to finally get a diagnoses and disability. I wonder if depression is another side effect of Lupus?? Do you Know? Thanks Angel F.
rhopeful32
06-09-2004, 11:04 PM
:highfive:
:D :D :flowers: :flowers:
" THANK YOU, LILY"
I HAVE BEEN LOOKING FOR INFORMATION ON THAT SUBJECT.
ONCE AGAIN "THANK YOU" :love:
joannemc
06-10-2004, 05:18 AM
I must be losing my mind , Im having trouble understanding the meaning of some of it! :wacko: .........Joannemc
Starduster
06-22-2004, 06:58 AM
Fantastic Document. I am also going to copy it to Word and print it up for my doctor. I saw myself in so many things there. It really validates a lot for those of us suffering from any one of those neurological problems. Which worries me as well, because there are so many devastating things that happen, and lordy, I've had some terrible CNS involvement... I pray that I don't get any more.. I really do.
Star
JulieCB
06-23-2004, 01:23 PM
:wave: Hi Everyone,
I read the article and couldn't understand it and then couldn't get it to print. My daughter printed it for me and mailed it to me and now I'm studying it.
The neurologist's nurse called me to supposedly tell me what the white spots in the brain were and said"you have a high ANA"...DUH!....I'm currently either thinking of going to another neurologist, trying to get an appointment with the current one (he evidently doesn't talk on the phone to patients), or forget it. My daughter lives in Wichita Falls and the doctor is in Tyler. She called and they asked if she wanted an appointment to discuss my case with them...She is 5 hours away.
If I do go back to this one, I will take the article.
Disgusted and confused...
JulieCB
dudley
06-27-2004, 09:08 PM
The artical looks great but I can't understand it. Has anybody translated into layman's term? I am new at this and just starting to get some definitions down.
I see nero on monday. Then in a couple of weeks.
Thanks Elaine
halfpintfl
06-28-2004, 01:25 AM
:wave: :wave: a great big thanks lily, you are a great wonder,
hugs for your help :nurse:
pmickm
07-20-2004, 01:57 AM
Even if you were diagnosed with MS, fatality rate with MS
is rare. I have MS.
Ellette
08-22-2004, 10:33 AM
I started reading it, then started to cry because I can't get my brain to focus enough to understand any of it. I had to read a couple times to figure out that they were saying that twins don't always both get it and they feel it has something to do with environment. Pretty much I got as far as where they were saying that the rate of getting it is higher in the US than worldwide (can I move?!) and only got that far by starting to skim...then I gave up. I feel so incredibly stupid. Really, I have no ability to retain anything that hasn't been in my brain for years already. I'll just have to take your word that it is a good article, and wish I still had a few brain cells left that were willing to work with each other so I could read through it myself and understand it. :sigh:
Sara
jujubean128
08-26-2004, 11:04 PM
:huh: thank you for the great article. I have been dealing with a non specific, questionable diagnosis of an autoimmune disease. i had an elevated ana, sed rate, fatigue, mood disorder (now i am questioning my diagnosis of a bi-polar illness). i have had numbness, tingling and increased sensitivity in my feet and i just realized today that it is probably not normal that my arms fall asleep when driving and i have to keep changing hands. i was really sick for a few months but then i started feeling much better and just ignored the neuropathies since i didnt have the fatigue. now i am feeling much worse, i guess this is the exacerbation and remission thing. i dont have insurance and have no doctor. can anybody out there give me some suggestions? thanks for being here. :)
JulieCB
08-27-2004, 03:55 PM
:wave: Hi Jujubean,
I have found several books in our public library that have helped me cope with some of the same problems you are having. Luckily I do have insurance so am seeing a rheumatologist, but honestly, the books and this site have helped me more than the doctor.
Try to eat more healthy foods, fruits, vegetables. Get more rest. When you feel good one day, don't try to do too much, bucause it will make you feel much worse the next day. Try to keep on an even keel. The stress really makes everything worse. Try to get in some exercise every day. I try to walk a mile every day and I can tell the days I don't, I feel much worse. I don't really FEEL like walking every day, but I try to make myself do this since it helps me. I have a hobby of scrapbooking and it helps take my mind off some of the aches and pains. I also use over the counter cremes for the arthritis since I can't take any aspirin or other pain/arthritis medicines because of stomach conditions. I also used a reflexology book I found in the library to learn where to massage my feet to get some relief.
I hope you can find some help.
I can really encourage you to keep coming to this site as it has helped me more than anything else.
Hugs,
JulieCB
JulieCB
08-27-2004, 03:58 PM
P.S. I forgot to say...Water is the greatest healer in the world. Drink 1/2 oz water for each pound of body weight each day. Also, get off caffeine as much as you can and artificial sweetners. Use honey or fructose.
JulieCB
jh.sthelens
09-28-2004, 01:49 PM
:erm: Hi. I have read the article. I agree it is dense with jargon but I got the impression that inflammation of the nerves/muscles is involved. I was hoping for a referrence to hearing. I am suffering progressive hearing loss. I first had tinnitus in Dec last year but by Jan asked to be referred as the noise had become impairment. Seen in May and have significant loss in right ear. Waiting 9 months for a hearing aid assessment/fitting. In July left ear started and is progressing in similar way. ENT consultant seeing me again in October as I reported my condition to him. Yesterday realised that I could not hear approaching traffic which unnerved me. Is there anyone out there with similar experience and does this fall under CNS involvement do you think? Any suggestions/advice welcome as I see him in three weeks time. jh.sthelens
jh.sthelens
09-28-2004, 02:31 PM
p.s. Forgot to say I have Auto-Immune Chronic Active Hepatitis kept under control by Azathioprine. I have had many other symptoms and have just insisted my GP do a blood test of the ANA's. Discovered heaing loss a symptom of SLE. Hope someone can shed some light. thanks Jennifer
Jennifer,
I'm not aware of hearing loss being a symptom of Lupus.
Have your doctors looked at the possibility of Menieres disease which is an autoimmune ear disease which results in hearing loss and presents with episodes of dizziness and vertigo etc.? Have they tested your thyroid also? Just a thought, good luck with sorting out what's going on with you, I hope you get some relief/treatment soon.
love
Lily
JulieCB
09-29-2004, 05:01 PM
:wave: Hi Jennifer,
I didn't realize hearing loss was one of the symptoms of SLE Lupus, either, but I am experiencing some loss. I haven't had any testing, but I'm just noticing that I am not understanding what people are saying to me and also the T.V.
I'll check into this.
Good luck with your testing.
Hugs,
JulieCB
Hi! :wave:
I wasn't aware that lupus could cause hearing loss until I saw an ENT to have my hearing checked. He is the one that informed me that lupus could cause hearing loss.
He has requested that I see him on an annual basis for monitoring.
Take care! :flowers:
foreverfriends1
10-23-2005, 05:59 AM
SINCERE ((thanks)) THIS ARTICLE will help me to explain my situation, when I do get to see the Rheumatologist. I could NOT understand some of the wording used - but now have enough information to explain my symptoms and to be able to ask for help style_emoticons/<#EMO_DIR#>/Thanx.gif donna42
rriffee@yahoo.com
04-24-2006, 07:38 PM
<div class='quotetop'>QUOTE(Lily @ Apr 28 2004, 06:20 PM) Quoted post</div><div class='quotemain'>
I thought some of you with neurological presentations of Lupus might find this article informative.
It's fairly indepth but I found the info on MRI and EEG investigations and the diagnostic dilemna between MS and Lupus interesting. There are several here who are still in limbo with their neuro problems so I hope it helps.
http://www.emedicine.com/neuro/topic360.htm
love
Lily
[/b][/quote]
this article explains alot of my symptoms. thanks
vickijo
05-23-2006, 07:17 PM
The article below is a little easier to understand.
Vicki
http://www.mtio.com/lupus/lal_7.htm
RJKTE
07-14-2006, 07:20 AM
Just throwing this out there..... a lot of the drugs used to treat RA and lupus cause neuro/MS like symptoms. I began having the sx shortly after starting methotrexate. The neuro doc and rhuemi I had at the time swore up and down that the methotrexate had nothing to do with it. I quit taking the methotrexate because it didn't seem to be helping and low and behold, my neuro symptoms went away.
Life's a journey
~Jillian
Tazzytnt
07-20-2006, 08:04 PM
sara
I felt the same way I didn't get to the point of crying but I knew after the first paragraph I was not going to get it. I no longer let my self get too tied up when it happends I just have to let it go for the time.
Tiphani
terrilynn
09-04-2006, 04:07 PM
Great article. In Oct 2005 I was hospitalized with double pneumonia. 5 days into my hospital stay I had a grand mal seizure while lying in bed. After coming out of seizure I had extcrusiating pain in right arm and shoulder. The seizure completly broke my right humerus, dislocated and shattered my right shoulder ball. 8" rod was placed with screws in humerus and reconstructed my shoulder ball (alternative was a ball replacement). Jan 2006 new additional pain in arm/shoulder...led to in March 06 .....surgery again...the rod had torn a whole in rotator cuff and one of the top screws had frayed my bicep tendon irreplaceably. Since ....sinus surgery, dry mouth and eyes..dx: sjogrens ..much more prior..toselecomy, endometreosis surgery, tubal ectopic pregnancy, hysterectomy, etc.......Has anyone had a seisure and broke or should I say destroyed their arm and shoulder or anything remotely similar? Thanks to all for reading.:rolleyes:
Melody2
09-05-2006, 11:05 PM
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
gypsimoone
09-17-2006, 03:39 AM
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
pippat
09-29-2006, 11:09 PM
Thanks answers lots of my questions will print for neuro.:)
londongirl
10-24-2006, 10:28 PM
hi ya lilly, thanks for the information, made great reading and understanding, so thanks for the posting, take care:) great stuff, liz:)
http://www.futuremedicine.com/doi/abs/10.2217/17460816.1.5.627?prevSearch=allfield%3A%28vasculit is%29
love
Lily
melissahet
01-08-2007, 03:58 AM
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:) :)
dudley
01-08-2007, 04:26 AM
Lily,
Thank you. Will take artical to my neuro. Think I will have to look up a few words first lol.
Love Elaine
balla
01-15-2007, 06:48 PM
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
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
hot_2001
06-15-2007, 03:46 PM
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.
MelissaNWestVirginia
06-20-2007, 01:58 AM
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.
((((((((((((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
LolaLola
06-20-2007, 02:13 PM
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
bcarlen
06-28-2007, 02:45 PM
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
smile2007
06-28-2007, 05:32 PM
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
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 (http://www.nlm.nih.gov/medlineplus/ency/article/000614.htm#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 (http://www.nlm.nih.gov/medlineplus/ency/article/001557.htm) 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 (http://www.nlm.nih.gov/medlineplus/ency/article/001324.htm) or herpes labialis) and type 2 (genital herpes (http://www.nlm.nih.gov/medlineplus/ency/article/000857.htm)) can cause meningitis in children, especially infants. Chicken pox can also cause aseptic meningitis. Rabies (http://www.nlm.nih.gov/medlineplus/ency/article/001334.htm) 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
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
bcarlen
06-29-2007, 03:25 PM
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.
samour
09-28-2007, 06:01 PM
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
Jesse88
09-10-2008, 09:54 PM
As a newly diagnosed lupus patient, I found this article very enlightening and disturbing. For years neurologists thought I had MS but the brain MRIs were normal. Finally a neuro at Wake Forest had the sense to do blood work and I was referred to rheumatologist. Positive ANA, ANCA, RF but some negative tests led to an "undifferentiated" dx until recently. I have slow but continuing symptoms of weakness and numbness along my left side, including my face. I am only seeing the rheumy at this point but I guess I need to get a neuro on board too. Thank you for this article.
AndreaK
09-12-2008, 12:26 PM
Hi Lily,
Thank you so much for that article....how informative! I have only recently been diagnosed with Lupus, and my doctor belives that there is some Central Nervous system invlovement as I suffer from horrible pins and needles, numbness and nurve pain on my right side....when it kicks in, it is so debilitating. I honestly did not realise the scope of this.... I have printed the article you porvided and will share this with my Rhemetologist....will all my doctors!
Warmest Regards,
AndreaK ;o.}}
torrox
12-02-2008, 02:20 PM
Hi Lily,
Thank you so much for that article....how informative! I have only recently been diagnosed with Lupus, and my doctor belives that there is some Central Nervous system invlovement as I suffer from horrible pins and needles, numbness and nurve pain on my right side....when it kicks in, it is so debilitating. I honestly did not realise the scope of this.... I have printed the article you porvided and will share this with my Rhemetologist....will all my doctors!
Warmest Regards,
AndreaK ;o.}}
Have you had a response yet? My wife has diagnosed SLE and over the last 2yrs has gained similar problems with her right side, she now doesn't get the proper sensations down the right side and she has a tremor in her right arm which seems to be a muscle spasm... She seems to have finally found a decent specialist but we're undergoing all sorts of tests which generally don't show too much... We are still waiting for the actual results but it would be nice to have more of an idea before going back in. :rolleyes:
Clare.T
12-02-2008, 03:02 PM
Welcome to the forum torrox, and to your wife ! :)
I am sorry to hear she has these problems and hope you will get some answers soon and helpful treatment. The neuro psychiatric symtpoms are often hard to diagnose and need lengthy testing to find the cause, which can indicate the correct treatment. Sometimes it takes time to find what medicine helps most. It is a highly specialised area. Let us know how you get on.
Best of Luck
Clare
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