Lupus Support Group

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)

Post edited by: Mommyof1, at: 11/23/2009 01:23 PM

Post edited by: Mommyof1, at: 11/23/2009 01:23 PM

Hi Brittney. I am sorry to hear you are still unwell. Have you seen the neurologist yet? Has he ordered tests (e.g nerve conduction/EMG/brain MRI/CT), make a diagnosis and given you treatment?

PS: I have the same symptoms as yours but with additional blurred vision. I have been on Neurontin and Lyrica but these were withdrawn. My rheumatologist concentrates on treating lupus; perhaps that's why I am still in pain and have multiple problems!!

Marie

Post edited by: Looopie, at: 11/23/2009 06:14 PM

i saw the new neuro yesterday. they uped my neurontin to 300mg 3 times a day and prescribed cymbalta for headaches etc. my skin biopsy for small nerve involvement is negative so i am confused. i have neuropathic symptoms with negative tests..just like with lupus before i was diagnosed. i also had decreased reflex response in my forearms. they wanna see me back in 3 months but dont wanna do an mri/mra or spinal tap unless i get worse. im tired of being treated for pain and not my disease!! covering up pain will not put me in remission! cns lupus cant be teeated with plaquenil so what do i do?? anyone else going through this?? grr

Hi Brittney. If your skin nerve biopsy is negative and your neurologist wants to do a brain MRI/MRA, then your doctor wants to rule out CNS lupus or CNS vasculitis. The MRI/MRA is not an invasive test, unless the radiologist injects a radioactive dye to see the blood vessels and nerves in your brain. The spinal tap is more invasive, and is probably to rule out viral or bacterial infection (meningitis?) that may cause neuropathic symptoms. I've heard that neurologists need to rule out infection before diagnosing CNS lupus, and if you have CNS viral meningitis, immediate antiviral treatment must be given (or death).

Your doctor has increased the Neurotin to 300mg three times daily - that's treatment for neuropathy or fibromyalgia.

The MRI/MRA test is important to diagnose CNS lupus/CNS cerebritis/CNS vasculitis - without it, you would never know if the lupus has reached the CNS, and will not be given adequate treatment for CNS lupus. Your neurologist is booking for a 3 months appointment probably to allow you time for your body to adjust to the new Neurontin dose.

I hope this information would help.

Best wishes and good luck.

Marie

I had viral meningitis that I'm pretty sure triggered my lupus. I don't have CNS lupus though

Hi Britt.....I'm so sorry that your going through all of this, sounds like what my daughter is going through.

CNS is just so difficult to diagnose....for me I guess it was the hemorrhage that started all of my issues and they definitely did an MRI which showed the lesions deep in my brain on the right side.....not sure if my rheumy would have come up with CNS lupus without the hemorrhages.

Just don't give up Britt....were all here to support you.

Eva

Hi Im new to the site and have had SLE since mid 20's and the past 10 years progressive cerebritis. It took them 7 years to dx the CNS involvement as I went down hill medically. I have horrible fatigue, nausea, headaches almost daily, dizziness, no appetite, problems walking and moving in general, cognitive problems, brain fog, memory problems,concentration problems,anxiety or depression problems, urinary problems, neuropathy pain, all over body pain,muscle,bone and skin and joints. Well thats enough sounds like Im whining. These symptoms come and go with treatment but have never left for past 10 years. They have yet to be able to stop the progression of the disease. I have been on almost all the immune suppressants now. I have just completed my third ritaxin treatment. That is a IV chemo drug you get every 6 months. Of course the side effects from all the drugs have been huge and I even had airway swelling with the ritaxin. I had to stop working 1.5 years ago because it was just getting to hard to manage and seems it was doing me more harm than good. I miss work awful and trying to relax my life to see if my body will heal but so far nothing has changed with the relaxing. I'm having a IV treatment of solumedrol (steroid) every 4 weeks and that seems to keep things at bay for couple weeks and than slowly everything starts to return before my next dose. The immune suppressant drugs celcept and ritaxin don't seem to halt the disease. I take neurotin, cymbalta, fentynal patch, lortab 10,

vit D, prilosec. I have a rhumetologist and neurologist. Ive had every test you can think of. They dx my cerebrates with combo of MRI and spinal tap. The spinal tap showed the most information for them it showed an inflammatory response in the cells which meant swelling in the CNS, not normal. I have very supportive husband and family, but I still feel guilty for having this disease and not a healthy mom and wife. Having to give up m career made it even worse. I keep my chin up take it one day at a time, try to keep stress down

walk the dogs daily, try to smile and not talk about my aches and pains and go on with the day.. not much else I can do. I will not let this disease define who I am!!! I have read your story and hope you the best. I hope you can use some of my story to help you. There are so many variations in this disease, everybody is different so smile and live one day at a time and do the best you can and try so stay happy and laugh its the best medicine..Also my dog I always say is my best therapy, he is always there to comfort and listen and he makes me laugh

Hi Sely...welcome to this fantastic support site. I also have severe CNS vasculitis Lupus. I have all the symptoms you have but I also have seizures do to the two brain aneruysms I had. I take Rituxan infusions every two weeks and have had for almost two year. My Rheumy says that I might have to for the rest of my life. I have been on every immunosuppresant there is except for Benlysta and that hasn't been studies in severe CNS. Actually Rituxan isn't a Chemo drug...now I forgot the name....I will look this up again and let you know. My oncologist used to be a chemist before he became an oncologist and actually found the antibody for Rituxan....so I am literally in the hands of the man LOL. You will find the members here very caring, compassionate and so kind....it's nice to talk to others living with this disease. Anytime you feel the need to vent, cry or just to share please feel free to post often. I wish you the best.

Eva

Okay Sely I found what Rituxan is.....a genetically enginerred chimeric marine/human monoclonal antibody....ask your nurse or doctor who perscribes this to you.

Eva

Britany,

I do have alot of those symptoms that you have and i was recently dianosed with Ideopathic Intractranial Hypertension. No one could figure my symptoms out til I went to my Gen Prac. on day and he nailed it. So I went to my neuro dr and had a lumbar puncture to verify it. Lumbar punctures are a big diagnostic tool for CNS involvement. I would recommend gettin into a neurologist and have some tests done. PM me if you have any questions.

Lynnette