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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
 
: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
 
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
 
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
 
: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. :)
 
: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
 
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
 
: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
 
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
 
Discussion starter · #33 ·
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
 
: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:
 
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
donna42
 
QUOTE(Lily @ Apr 28 2004, 06:20 PM) [post=305173]Quoted post[/post]

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
 
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
 
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
 
seizure

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:
 
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