Lupus Cerebritis/CNS Lupus/Symptoms..Etc

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 11/23/2009 2:22 PM (GMT -7)   
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)


 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Protonix- 40mg once daily; Neurontin- 300mg once daily at bedtime; Zoloft-50 mg once a day; Cetirizine- 10 mg once a day; Singulair- 10 mg once a day; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.

Post Edited (Mommyof121) : 11/23/2009 2:29:05 PM (GMT-7)


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/23/2009 4:15 PM (GMT -7)   
Always be an advocate for yourself..it sounds like you have CNS lupus..when i have only ever had 2 seziures but i also had lesions on my brain and they did a spinal tap and diagnosed me with CNS lupus.. make your doctor listen to you.. plaquenil alone wont help with CNS involvment.. good luck and keep us posted...
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/23/2009 7:02 PM (GMT -7)   
They can also tell if it's CNS lupus by MRI or blood tests. I have a lot of your same symptoms, had an MRI, it was clear also my rheumy has been monitoring my blood work. I do hope your doctor listens to you and you begin to feel better soon! Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/27/2009 11:27 AM (GMT -7)   

Hi!

Me, too, me, too. Welcome to my symptoms. My drs are great about treating me, but I often have the sense they are skeptical about how sick I say I am. The old.."butyoudon'tlooksick" philosophy really makes me mad, why, my cheeks are so nice and pink, so..... healthy looking! smhair Have you had seen a neurologist? I did and was glad my rheumy made me go.

hugs,

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/27/2009 4:47 PM (GMT -7)   
I too advocate for a neurologist, one who is also familiar with what lupus does to the brain. I was lucky when my lupus spread to cns my rheumy believed me and changed my meds right away.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 11/28/2009 7:54 AM (GMT -7)   
i saw a new neuro the 25th and they said my skin biopsy for small fiber involvement was negative for neuropathy and my symptoms are patchy as seen in vasculitis and my 2 seizures at 15 could have been caused by that as well. my arm reflexes were also less reactive than my legs. however, they dont feel i have any life threatening symptoms so they uped my neurontin dose 3000mg 3 times a day and added cymbalta 60 mg a day. if anything worsens a mri/mra and spinal tap will be ordered but otherwise im not due back till 3 months from now, *sighs* i wish once again they would treat my disease and not my pain :/
 
 
*Lupie Britt*
 
-SLE- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Flonase Nasal Spray- twice daily; Dexamethasone Nasal Spray- 3 wk intervals; vitamin- once daily; Protonix- 40mg once daily; Neurontin- 300mg once daily at bedtime; Zoloft-50 mg once a day; Cetirizine- 10 mg once a day; Singulair- 10 mg once a day; Dexamethasone suspension for ulcers;  excedrin migraine- as needed.


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/28/2009 1:47 PM (GMT -7)   
Hi! Britt(?) and everyone,
I, too, will have another MRI/MRA and my first spinal tap the next time I get sick enough for a hospitalization. Which was thought a "reasonable" deal by by neurologist who I liked alot, and said, just come and see him when I want to, and implied I was in good hands with my rheumy. They are both affiliated with our big university teaching hospital which has a renowned lupus research clinic. My neurontin is only 600mgs q12, and that with prednisone and plaquenil are so far keeping me working and my kidneys good. My pain is getting worse, so I am mid med change. My pain just wouldn't travel around to a different joint like it usually does, so I had bilateral hip and ankle xrays.... not good, some advancing degenerative osteoarthritis, and blood work due in April. So hey, I JUST KNEW I was walking around in pain! I was! I was! In fact...I feel like I have been hit by a truck. On the happy side, I wasn't tongue .
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 12/16/2009 4:18 PM (GMT -7)   
Ive been told i have fibro and cfs.Have b12 shots every 2 wks,mri showed lesions on 1 side,rls,hypothyroidism,gabapentin-300x4.Im relly not in as much pain as what I am weak,spacey,headaches,numbness.Cant seem to think clearly.So iI feel like Im going into panic mode.My sibling has lupus,they tested for lupus-but said the strand wasnt broken.Going to see a pain management doc soon cause my docs sending me.Im not even taking a tylenol every day,,,like I said its more weakness and numbness,,,and the tripping out of course.I said I want to see a neurologist so I see him after the pain guy.Im in Canada by the way.Anyones take? confused

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 12/19/2009 6:31 AM (GMT -7)   

Hi! Shoe,

It sure sounds like you are in a flare of nerve inflammation, I have felt just the way you describe. Since I am still trying to stay gainfully employed, the brain fog scares me the most, and the more tireder  I get, the worser my symptomscry . And your doc knows that autoimmune diseases aren't ever diagnosed, or ruled out based on one "normal" lab test. I hope your neurologist puts the picture together for you. And tell him to do every blood test in the book, literally. And take notes about your symptoms and write down your concerns, so you will be prepared for your few minutes of time with the specialist. I was falling about 3 times a week until I started prednisone. My scarey headaches are only rt. sided, but my left side would get numb and my left foot wouldn't pick up so I would trip, now I just stumble like someone with a drinking problemtongue 

Take care and keep us posted,

sue

ps. I live near Buffalo and Merry Christmas! EH!


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 12/19/2009 10:03 AM (GMT -7)   
hey sue!yeh...went to docs yesterday.he put me on an antidepressantand sleep aid all in one.I read it and it says weight gain,,im tellin ya if i start packin the pounds on ,im stoppin,.and he gave me vit d-one pill once a week,50000 mlg.so anybuddee takin any of those?I dont know-he said my ana really doesnt support lupus..I dont understand.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 12/21/2009 12:54 PM (GMT -7)   

Hi! Shoe,

A positive ANA is just one clue in the big lupus puzzle and every dr. who deals with Autoimmune Illness, knows that and that ana titres come and then go,  Plus: a. lupus is the great imitator b. it is a dx. of rule everything out first.... and c. they don't know what else to call it! My dr. commented that well, my ana was only "low positive" when he first repeated it and I said... Your point? Since he still writes lupus on all my lab requisitions, I don't think it really mattered. And I was frankly, too sick to care! I have bone density scans every year because prednisone is linked to osteoporosis, and I take calcium with d every day. My recent Vitamin D level was only 30, (anything below 39 is considered low) so I was told to take at least 1200IUs every day, double what I was taking. I bought the gummy vitamin d's that have 1000IUs per gummy, and I giggle that it is a fun way to take a pill after I swallow the 8 meds I take twice a day. I was diagnosed with Antiphospholipid Antibody Syndrome, (APA) back around 1995), so I had a headstart when I needed to go back to a rheumy for a diagnosis beyond that. Keep reading these postings, and scan back through the old threads, you will learn so much and see that what you are going through, is nothing but what way, way, too many of us went through for a diagnosis, or non diagnosis or ____________fill in the blank. I handed my dr. a timeline of my illness from the first stillborn baby, and infection, two pages that I narrowed down from 10 and he said..... after reading in front of me.... What do you want me to say? You have lupus. So I really was one of the lucky ones (I've always thought it helped that I was a nurse and had worked with my drs), who didn't have to think I was LOSING MY MIND for too long once I started getting ataxic and falling. I had to go through the ... Sue, are you depressed? You aren't depressed?? Let's give you some paxil just to be sure......Are you SURE you aren't depressed. It must be menopause. Ok... am I falling because I am depressed or am I depressed because I am falling????  Ok, dr. (my GYN), since when is falling a symptom of menopause????? No, a clue, I don't get a period anymore........sue.... these antibody levels aren't normal... you need to see a rheumatologist. Hmmmnnnn, I had already seen one 10 years previously, so I went back. Looking back, I am really grateful I had the sense to document anything, and ask for copies of everything. Hope you feel better soon,

sue


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 12/21/2009 1:33 PM (GMT -7)   
suetoo-ya..Ive been thru alot the last 2 years.have hypothyroid,rls,breathing apparatus,b12 shots every 2 weeks,chronic fatique ,vit d 50000ml a week.,arthiritis so bad in my knee that was run over,they finally did an mri on it 10 years later after it was swelling and turning a pretty purple.said have torn maniscus-coulden cut cause I had way too much arteritis!whatb a peicea work!But ya, low vit b12 can cause permanent brain damage and central nervous system disorders.i told them for years how tire I was-people at work would comment on how tired I looked.So after the whole fibro thing,confusion,I asked him to check My b12.It was extremely low.The blisters on my head and even my scalp hurt really bad,almost like cigarette burns.Im on gabapentin,eltroxin,vitb12,vit d,toradol ,and the latest is the sleeping aid with antidepressant.

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/3/2010 11:59 AM (GMT -7)   
My sibling has lupus-Ive been diagnosed with fibro andcfs.But alot of the symtoms are more like lupus.Doc said my ana er antiboties show basically that Im probably not going to get lupus.Still have blisters on my scalp...alot of swelling in hands and feet. :eyes are swollen and feel like golf balls.I m getting b12 shots every 2 wks since I discovered it was low.Im on gabapentin..sleep aid eltroxin for hypothyroid,vitd-50000mlg a week.just take tylenol for pain...but if I go off gaba,,my head starts racing with thoughts...weird...feels like I drank 16 coffee..cant think straight.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 1/4/2010 12:30 PM (GMT -7)   

Hi! Shoeless,

I know what you mean about your head racing. I get so swamped in anxiety, and I feel like my nerves are screaming, too. I have a 6 week pattern of symptoms, and my head racing happens when my b/p is up, and my ankles are swelling. I get so sick of being sick, and when I am not so sick, I try hard to appreciate it. Trying...trying....tongue Happy New Year,

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 1/4/2010 4:42 PM (GMT -7)   
Thanx sue...and all.I started taking this stupid antidepressant sleep pill....and ya know I am swelling so much....I dont know whether its this pill or this fRICKIN condition.my hands are so swollen,I cant even twist my ring!It was too big.And Im out of breth when I climb the stairs.I can still do 100 crunches,Ive aslways worked out...sept for this last year.The breathing scares me tho.yessssss...I had a good new years eve...stayed in my jammers all day!And then had prime rib dinner the next day,with my daughters,and my 3 crapzuas...
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