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Mommyof1
11-23-2009, 02:27 PM
Through all my research based on my symptoms I am thinking I could have CNS involvement which is not treated with just plaquenil and nsaids but my dr is not believing that I do. I am wondering if anyone has any imput on my symptoms I have listed below and if anyone with CNS involvement has similar symptoms and what has been used to treat it.

Previous:

-Had 2 seizures at age 15(were told I had epilepsy but years later found out I had lupus..any relation?..still have abnormal EEG's and nystagmus)


Current:

-Headaches(migraines-pressure with & without pain and sometimes occurs with stiffness in my neck and tremendous pressure in my ears and/or eyes and temples)

-Brain fog(Trouble concentrating & with memory, spaciness/dreamlike state..varies from sligtly to very bad)

-Peripheral neuropathy(burning pain/tingling..started in legs and is now in arms, back and face)

-Twitching(can be anywhere but lately is in my left eyelid on and off)

-Orthostatic Hypotension(Ive read it can occur with peripheral neuropathy but im not sure what causes mine)

-Palpitations but other than a systolic heart murmur have been told when I feel chest pain or pressure my heart rhythm is normal(was thinking along the lines of autonomic nervous system..also possible with the hypotension as well)

-Mood swings/depression

-Extreme fatigue(I know it can be a factor for all lupies but I can sleep 12 hours and 4 hours later be ready to go back to sleep.)

-Ringing in the ears(constant tonal since last year but also pulsatile at times especially with headaches and when laying down)

Angel Oliver
11-23-2009, 04:23 PM
You know something.Here i am lately resigning myself to the fact.....maybe i have not got Lupus and the Doctors are right....then i come here and read this....i have all these symptoms.Oh the having no diagnosis can be a very frustrating time.....but i was meant to read this.Im sorry you are experiencing all these horrid symptoms too my friend.But thanks for writing it all down so i could get back into 'fight' mode again.

Sending you gentle hugs
Amanda.xxxxx

tiggerlishus - Heidi
11-23-2009, 05:11 PM
hay i don't know if helps much but i have been having alot of the same systems i have spoke to my gp cause i find my remu really doen't listen and he's looking in to send me to specialist unit in london so maybe its worth lookngi for second opion your self i hope it helps and if yours not sorted before hand i will let you know how mines goes maybe it will give some more light x

Angel Oliver
11-23-2009, 06:09 PM
Oh wow Heidi.Hope you get a good one this time round.This one is the best in the north west where i am and is my second oppion.You know when you dont want to look like you dont have faith in all doctors....well thats me.Let us know how you get on...fingers crossed.xxxxxxxx

magistramarla
11-24-2009, 10:29 AM
Yes, I'm right there with you, too.
I've had several of those symptoms, too and it's really frustrating when the docs just dismiss them. You would think that they would be interested in getting the "whole picture". Sometimes, I think that we patients are more interested in making all of the connections than they are.
The peripheral neuropathy in my legs and feet just drive me crazy. My "twitching" are spasms that happen in my legs. Sometimes, my legs spasm while I'm typing, and my laptop jumps. This often gives my cat quite a scare. The worst thing is that my legs "tighten up" and then spasm every couple of hours at night. I can never have a decent night of sleep.
Marla

mountaindreamer
11-24-2009, 05:11 PM
hi mommyof1,

so sorry that you are dealing with all of those problems. I notice that i experience the same symptoms when i am in a flare. I have been told that if you have a MRI during the time that the symtoms are really bad, that they might be able to pick something up. But, it is not reliable, and it is difficult to get in for the test during the recordable instances. So, i guess we all just accept that there is CNS involvement.

If the explanation that these CNS involvement symptoms are the result of inflammation in the blood vessels in the head, then i wonder if prednisone or a NSAID would be used for treatment.

Mommyof1
12-07-2009, 10:17 AM
You say you have the same symptoms moutaindreamer...well im wondering what meds are you on for your lupus? I have been tested for fibro but have no tender points or muscle tenderness, my pain is not widespread like fibro either its patchy moreso like vasculitis so i was just wondering if your meds help with those symptoms at all, as I know with fibro they would not.

Sarah2010
04-26-2011, 06:29 AM
I just typed a HUGE reply and pushed the wrong button.....UGH....ok.....give me a second....

Mommyof1,

I have these same symptoms as you listed above....
a few weeks ago I had a terrible headache and went to the ER....I then had a seziour at the hospital and was giving a MRI immediatly. THey Dx me with ceribritis and CNS. I already have SLE for almost a year...but it just recently went to my central nervous system. I spent 2 1/2 weeks in the hospital after this. I was treated with super high dose steriods. I started Keppra and Cellcept and have my fingers crossed that this is going to work. I stilll have the tingiling..numbness..pain/pressure...and now more than ever I am disconnected..in a dream land...feel WEIRD!!!!! I am seing a neuropsychologist to sort through whats really going on "upstairs" He will test my brain function, memory, and then help me deal with the emotions of having a tramatic experience. Pleas if you are still having these symptoms, go to the Dr.....PLEASE!!! This sezior and brain swelling could have easily killed me...I am lucky to be alive!!!!! I am so thankful that I went to the ER and was in the hospital when I had my seziour. XOXOX Hope this helpes.
-Sarah

Mommyof1
04-27-2011, 11:35 AM
I was actually symptoms very similar to yours and ended up having a seizure back in jan of 2010 but they never did an mri or anything. I was pregnant at the time and it had only been a week since I found out. The pregnancy seemed to put me into a remission so they never did anything about it and of course after since my symptoms weren't present all my testing was normal. My daughter is now 7 months old and things are coming back in labs and symptoms. I'm now on prednisone after my 2nd bout of pleurisy which I never had before till after my daughter. Things are just crazy. I hope you are doing ok! *hugs* -Lupie Britt