brain function?

Cognitive Problems? Neurologist?
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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/9/2008 1:19 PM (GMT -7)   
In the fall of 2006 I was having some major cognitive dysfunction, and improved with ~16 months of Cellcept.

Recently I have had neuropsychiatric testing that shows I do have some remaining problems with mental functions.

When I ask the Neuropsych about how to avoid more or regain function, he says to see a therapist for coping strategies.

When I ask the Rhuemy about how to avoid more damage or regain function, he shrugs.

I'm NOT satisfied with these answers....they aren't answers at all!

Has anyone seen a neurologist with these type of symptoms? I'm not sure if that's the kind of doctor I need to find or what. Please let me know if you have similar issues and what was done about them. Or let me know if you've seen a neurologist and what kind of answers/results you had.

Thanks,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/9/2008 2:40 PM (GMT -7)   
Sorry Lynnwood . . . . I haven't pursued my issues. Most people just don't understand. They say "oh ya, we all get like that" Well, duh! No they don't!!

I'll be watching this topic for some info. I don't feel like I'm bad enough to pursue it, medically. I just know they will 'find nothing' and I'll be even more frustrated. The rheumy seems to acknowledge the fact. The gastro even asks about it . . . but I think, for me, it is a matter of inflammation. I am better mentally when I am better physically.

Sorry you are dealing with this.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/9/2008 3:00 PM (GMT -7)   
Sorry Lynnwood, Yes I did see a neuro because my doctor wanted me to based on a lot of forgetfulness. It was getting really scarey. All they did was took an ultrasound of my brain and said everything was fine. They said it must be because of the meds I take. So basically it amounted to the same shrug of the shoulders that you got.
I hope you get some answers
hugs
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/9/2008 3:09 PM (GMT -7)   
Lynnwood, you really did get an unsatisfactory answer. Sorry.

My memory is awful and I know it. I went to my neurologist and he did the normal in-office tests and told me that I don't have early altzeimer's. He knew and tested my dad who had early altzeimer's at age 80 so I'm hyper vigilant. I do have some small vessel disease plus I'll be sixty next April so these changes don't surprise me. But I think you're quite a bit younger than I and an answer like you got would concern me. Not because of memory loss but because of insensitivity of the doctor. I can't believe that there aren't plenty of things that you can do to at least keep your memory for worsening. I'd get a second opinion. If your insurance will cover it, that is. Which it probably won't. But you know the drill. Mind puzzles, keep reading, etc. I'm sure there's research on the web that might be helpful.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/9/2008 4:07 PM (GMT -7)   
Lynnwood,
I was actually diagnosed with cerebral vasculitis (cerebritis) due to lupus. It was the most horrifying thing I have dealt with to date. Even though I do not have active brain inflammation at this time, I know I lost some ground. I definitely have more difficulty with reading comprehension and retaining information. I have seen two different neurologist who could offer no advice. Lupus strikes so randomly with no rhyme or reason. I think one key is quick treatment. The cellcept is helping me tremendously right now keeping things at bay, but i'm not regaining what I lost. Judy

smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 9/9/2008 4:25 PM (GMT -7)   

Lynwood, when I spoke to my Rheumie about what was going on with me, he told me I was stressed out and that is why I was having those problems. At the time I did have stress, who doesn't?, but it wasn't that.

How do you know what to think anymore with the doctors? Everyone has a different answer and it drives me crazy.

Sorry I can't give you any advice, I hope you can find some answers soon to your problems.

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/9/2008 8:38 PM (GMT -7)   

Hi Lynnwood, I just ran accrossed this when I was reading about physicians for what ever it's worth I thought of your question.

http://news.yahoo.com/s/nm/20080902/hl_nm/activity_seniors_cognitive_dc;_ylt=Aj6CmEzUssUWIALWGVNOkhzVJRIF


 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/10/2008 5:18 AM (GMT -7)   
Hi guys,

Thanks for your votes, comments, and ideas.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


rere7896
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 9/10/2008 12:55 PM (GMT -7)   
Hi there, I saw a neuroologist but my rheumy is who really helped me. Did they do a SPEC scan on you? It's a nuc. med. study where they scan your brain and then give you contrast and rescan your brain. I found that most of my frontal lobe is dead so they up'd my cytoxan and prednisone for a bit. My prednisone went back down some but I still do my cytoxan every month and next week I will get phoresis for a week. Good luck but I'd check into getting this scan done if you haven't yet..... Good luck

Good luck to everyone and may God Bless you everyday.....

I'm currently taking atenolol, verapamil, ovcon (no cycle since 2000), prednisone, neurontin, cytoxan, folbic, diludad, loratab, demerol,(depending on severity of pain), promethazine, singulair, lasix, amitriptyline, baby aspirin, patanol --- I think that's it...

I have SLE, SVT, MVP, Sjogrens, Fibromyalgia, Neuropathy, migraines, Pleurisy, asthma, endometrosis, Reynauds -- think that's it as well....


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/10/2008 1:05 PM (GMT -7)   
rere7896,

I've had a couple of MRI's with & without contrast --

Is the SPEC scan different?
Was it ordered by the neuro or the rheumy?

Thanks a lot!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/10/2008 1:17 PM (GMT -7)   
Ah-ha! Found out more information at:

spectscans.com/

Thanks rere7896!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/10/2008 1:49 PM (GMT -7)   
rere7896,

Did your insurance end up covering your SPECT scan?
They seem expensive for anyone on SSD.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/10/2008 1:59 PM (GMT -7)   
I wish I had some advice for you Lynnwood.  I do understand how difficult it can be at times.  Since my stroke in 2002, I'm missing "pages from my brain dictionary", and I stutter sometimes.  I relate those things to my stroke, but there could be some validity that it's the lupus too.  It's not bad enough to hamper my lifestyle though.
 
I hope you get some REAL answers very soon,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/10/2008 3:31 PM (GMT -7)   

Sometime in 2007, my two grandsons were here, both adults, to spend the weekend.  Josh asked me to call in a pizza and he would go get it and pay for it.  So I went to the phone, but could not dial the number.  so I decided to try to dial the number in my room.  Instead of dialing the phone number, I set down at my computer and started playing a computer game.  Josh got irritated and  called the pizza in himself, and left to go pick it up.  I don't remember his leaving or being gone.  Finally I was acting so strange that my grandson called 911.  On the way to the hospital i was medically unresponsive.  At the hospital I was medically unresponsive.  they did every test they could think of and found nothing wrong.  they at first thought that I was having ministrokes, because sometimes I could think better than at other times.  but that was not the case.   I don't remember much about the hospital part until three days later when I came to myself, and could interact with my family when they came to visit.  My two daughters stood beside my bed at the hospital.  Never leaving, until they knew I was out of danger.

Everytime I have talked to a doctor about missing time, blank places in my brain, i have been referred to mental health.  I think that this is all a doctor knows to do, when his medical training does not tell him what is wrong.  this is the reason I asked about PTSD before.  PTSD can cause one to have missing time, and blank places.  the human mind can deny what is too traumatic to deal with to the point that entire segments of our life can come up missing.  One of the things I am diagnosed with in the mental health area, is PTSD.

I think I could have been misdiagnosed in several ways by the mental health docotors that I saw.  When that lady, can't remember her name, talked about slurred speech, stuttering, etc., the other day, it started me to thinking about my own brain disability, and wondering if I have been misdiagnosed.  those diagnoses however got me the SSD that I so badly needed.  But today I am 62.  they can't take all of my social security benefits away from me.  too old. 

Maybe we can be vocal today, and maybe not help ourselves, but we might help help others in our path along the way, to benefit.  Doctors need to listen to us.  all of us.  all the time.  I had a neurologist at the hospital when this incident occurred.  she diagnosed me with altered mental state.  this is all she could take of.  all the tests were normal.  I never followed up with her.  got sort of angry at her.  she told me I had RA, but that the numbers were still out on whether or not I had lupus.  Now I have had a blood test that was off the charts that verifies lupus.  but what about all those years no one believed me.  even though two doctors had diagnosed me, they didn't believe it.

Sorry to rattle on for so long.  i have been thinking about this misdiagnosed for a few days.

Hester

 


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 9/10/2008 4:17 PM (GMT -7)   
Lynnwood, I’ve had cognitive problems and I was already seeing a Neurologist for some other issues, I had a friend with me at the Dr’s office about 3 years ago. She set me up for EMG(?? Wires to the head and you can’t sleep more than 3 hours the night before) and a MRI. I got a call to come back into the Dr. office before she had gotten the MRI results the EMG showed one side of the brain wasn’t working the way it should. She had me start Namenda at once.

I’ve had ups and downs but I’ve really been lucky I think, I have a great rhuemy & neurologist. My rheumy sent me to the neurologist when I had stated losing feeling and sometime movement in my rt. Foot.

I live in NE OKla. I would be willing to give you my Dr. names if you are anywhere in this area.
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/10/2008 6:55 PM (GMT -7)   
Thanks, OldHippyRebel -

It sure sounds like I could use a good going over by a Neurologist. I wonder why these morons here haven't suggested it?!

Thanks for the potential referral, but it's a long way from here (Atlanta, GA) to there! LOL

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/11/2008 6:16 AM (GMT -7)   
OldHippyRebel
 
I like your name.  Trying in my mind to picture an old hippie.  an old hippie rebel.  Many of us were rebels in the sixties.  Give peace a chance was one of my favorite songs.
 
Now we rebel against ideas like "typical Lupus patient".  I would imagine you still have somewhere in your heart the power needed to fight back against this brick wall of lupus denial, presented to us by well meaning doctors, who may simply not know what to do.  Some doctors seem to have a hard time when they are stumped.  Not many have the ability to say, "I don't know".  We are not objects who fit in little boxes that they wish to create for us.  and if we don't fit in the prearranged box, then we must not have lupus.  the real lupus.
 
What they don't understand maybe is that all of us are unique.  Each of us respond in our own way to Lupus and Lupus symptoms.  Insurance companies is a whole other ball game.  Insurance companies do not make a lot of money off of people with Lupus.  they lose money maybe.  so some do not cover the illness Lupus.  And now privatizing medicare/medicaid has made these programs become part of the profit seeking insurance company.  and where does this leave us?
 
Your name was an inspiration to me.  Reminded me of better days, younger days, when I was full of energy and had no brain fog.  Still tryuing to create in my mind an old hippie rebelling against the establishment.  Rebelling in a different way, but the rebel in us lives on perhaps.  And for me it has allowed me to have the ability to fight back against this disease, and against preconcieved idea of how a lupus patient should present themselves to the doctor.  there is power in groups compared to walking alone with our many symptoms, and not knowing what to do.  And this group is the best thing that could have happened to me.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/11/2008 7:02 AM (GMT -7)   
Can we keep this thread to the topic of brain & cognitive disorders and neurologists?

It's easy to walk off and start talking about how lupus is perceived by drs & others, but I think we have other threads for that.

Thanks so much,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/11/2008 8:26 AM (GMT -7)   
Can we keep this thread to the topic of brain & cognitive disorders and neurologists?
 
absolutely
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


rere7896
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 9/16/2008 7:34 PM (GMT -7)   

Hi Lynnwood,

   It is different from the MRI and my insurance (believe it or not) did cover it...... SPECT scans show more "brain function" than the MRI b/c it mostly shows grey and white matter. I would ask for it if you have NEVER had one or even if it's been a while. VERY GOOD TEST!!!!!!!! My rhuemy ordered it but any doctor can order it for you.

Good luck


Good luck to everyone and may God Bless you everyday.....

I'm currently taking atenolol, verapamil, ovcon (no cycle since 2000), prednisone, neurontin, cytoxan, folbic, diludad, loratab, demerol,(depending on severity of pain), promethazine, singulair, lasix, amitriptyline, baby aspirin, patanol --- I think that's it...

I have SLE, SVT, MVP, Sjogrens, Fibromyalgia, Neuropathy, migraines, Pleurisy, asthma, endometrosis, Reynauds -- think that's it as well....


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/17/2008 3:46 PM (GMT -7)   
Lynnwood-
So I am only in my 20's but I had really severe neurological problems, had pulse cytoxan for a little over a year and was much better. However, I still had problems with switching words that started with the same letter when speaking and writing, balancing, focusing, and doing other tasks. I had neuropsych testing pre and post treatment btw.. So my rheumatologist (who is my hero basically!) and neurologist sent me to a speech therapist and to PM&R- physical medicine and rehab. PMR works with a lot of people with things like spinal cord injuries etc and they were able to help me find ways to deal with problems and regain some of the balance/agility i had lost. Physical/occupational therapy combinations can also help.

If you want more info let me know.
Best of luck!
Sharky

Jujubeee714
Regular Member


Date Joined Jun 2012
Total Posts : 26
   Posted 9/17/2012 6:05 PM (GMT -7)   
My neurologist is done with me. He said, "See ya in a year". I was seeing him for PN for the last ten yrs, then for TN and multiple cranial neuropathies the last two years. Then I had a killer headache and the left side of my face went numb. He had an MRI done that came out clear and I had a carotid ultrasound that showed less than 50% blockage in my right carotid bulb and none in the left. I was dx'd with SLE in March 2010. I do not think I have cerebritis since my MRIs are clear, is this correct? Also I recently changed rheumies since I was not happy with treatment and my new rheumie put me on CellCept and since I've been feeling better (except mystomach) I know the hole you feel you fell into Lynwood. I get it. My neurologist has no idea how to deal with someone with lupus and never even suggested a neuropsychiatric referral since my MRI was clear. I am just hoping the cellcept makes me feel better. Maybe I'll see a new neuro but situations like the ones you are in have kept me from trying. The stress is outrageous. I'm not very impressed with doctors' knowledge of SLE. At all. Thanks, Love Julie

Angelsway
Regular Member


Date Joined Jul 2012
Total Posts : 54
   Posted 9/24/2012 9:18 AM (GMT -7)   
Lynnwood, I took my son at 14 to a medical neurologist because they concentrate on fixing the misfires and weird happenings of the brain. He has celiac sprue and this cause epilepsy. If you didn't know him you would not know that he
was having lapses in time while you were talking to him.

Temporary meds for the epilepsy were given to him. He went on a gluten free diet and the epilepsy disappeared within a year.
Jarrows has a neuro optimizer and two a day seem to work to improve the situation. Also, sometimes it is as simple as a B-12 deficiency which doesn't always show up in the blood work. If you get B-12 make sure it is sub-lingual or it just goes in and out.

I am a person that believes that you are what you eat and when you have lupus and all these other auto-immune diseases, it is more important than ever.

By the way 20-26yrs old was the worst for me...I didn't know if I was coming or going sometimes. Hang in there and
find a neurologist that will work with your Rheumy. If you need to replace both of them and go with doctors that are
more interested in you being well than them being right.

Good Luck!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/24/2012 9:30 AM (GMT -7)   
dunno why this old post came up. after an 18-month course of Cellcept my brain had returned to almost normal, and in the 3 years since then it has continued to improve. Unless I am tired, hungry, or stressed it's pretty much ok. However, still can't work as thinking for 3-4 hours straight on successive days increases stress just enough to disconnect mind.

today I'm a bit dopey from concussion yesterday and still seeing double -- but it's not lupus! lol
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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