Brain scan question

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 1/29/2008 10:58 AM (GMT -7)   
I know we joke around about the brain "fog stuff but I was wondering if you have ever had a brain scan done? if so why? was it related to A/I disease?
Does anyone feel like their "fog" is turning into something worse? I've talked to people about how I am always forgetting things. They just laugh and say they do too. But they don't seem to get it. I'm so forgetful i'm actually afraid there is somthing going on in my brain. I'm starting to think the fog is so funny anymore.
Even though I did spray lysol in my hair the other day and thought I must be healthy since it kills 99.9 percent all germs within 30 seconds. LOL See, now that's funny but when it's somthing important and I can't retain it for morethan a few seconds it's not funny anymore.
Can anyone add to this or try to clear it up a bit for me.
thanks in advance
carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 1/29/2008 11:50 AM (GMT -7)   

Hi Carol,

I did have an MRI several years ago because I was experiencing symptoms of MS, which is classified as an AI disease.  fortunately, the MRI showed nothing.  My symptoms were most likely related to other AI things (e.g., RA, and/or sjogren's).  I don't know that I've ever experienced brain fog like you're referring to, however.  My symptoms concerned paresthesias (tingling) in my feet and hands.  I do know that lupus is related to MS, among other things, and with some of these drugs we're all taking (e.g., the biologics), drug-induced lupus and drug-induced MS is a real threat.

I'm certainly no expert, but I wouldn't think an MRI would show any obvious brain abnormalities related to brain fog, would it?  An MRI/brain scan would only show physical abnormalities (e.g., lesions associated with MS).  I don't know how they would track a decline in cognitive functioning (e.g., memory, etc...) without using a cognitive test battery (paper/pencil tests).  Just my opinion, though--perhaps others will have more information on this.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 1/29/2008 3:24 PM (GMT -7)   
Hi Carol,
 
I've had MRI scans because of my stroke, but not for the fog.  I'm sorry you're having so much trouble with that.  I can understand how hard it must be on you.  If it's any consolation, my grandfather, when he was about 40 years old, healthy as a horse, sprayed glue under his arms instead of his deoderant........ No joke.  LOL!!!  Your Lysol comment reminded me of that. 
 
I know I have periods of time where I forget things that I clearly shouldn't be forgetting.  And moments where I do goofy things that make my husband just shake his head.... It happens.  I notice it more frequent when my Fibro is in a flare. 
 
I think if you and your rheumy are wanting to investigate further why it's so extreme.  She might look at whether you have some CNS lupus going on.  An MRI, and a spinal tap is usually the forms of finding out whether you have that or not.  I've never experienced a spinal tap.  So I can't comment on what that is like.
 
Just remember, you've been through an awful lot in the last few months.  Your body and mind might just be saying, "I need a break. I'm tired".  I had some serious forgetful times about 1-2 months after my med allergy.  I actually would mix up which pills go in the a.m. and which ones go in the p.m.  I would get the doses wrong.  I also would take the p.m meds in the morning and vice/versa.  It was really scary.  I ended up taking twice the dose of my anti anxiety/anti epilieptic med one night.  I wasn't thinking clearly at all.  My body was really struggling.  I forced myself to throw up as soon as I realized what I had done.  Puked those pills up right away.  Then straightened myself out, with the help of my very scared husband.  I'm so glad you have the health care coming to look after you on such a regular basis now. 
 
So be kind to yourself Carol.  The body will return to normal, but it will take time.  This might just be a phase of recovery you have to go through.  I don't know.  Just thinking out loud!
 
Love ya,
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/29/2008 4:09 PM (GMT -7)   
I have to have either a CT scan or an MRI at least every two years because of the family history of brain cancer and also my migraines. Migraines can cause small or large strokes for they like to watch for signs of problems. I have really bad brain fog if my disease is active and I am off Imuran. For some reason Imuran controls the worst of my CNS symtoms, the crawly feeling the fog in my mind the worst of the mood swings- all of it is controlled almost completely if I take Imuran. So my rheumy and I know, KNOW, I have CNS involvement. Add in the damage to 2 periphrial nerves in my leg/hip area and the picture isn't fun.

I suggest that you talk to your rheumy. I have no clue if taking another med would help or not, I have no idea if perhaps a ministroke or a couple have caused problems. Ask for an MRI and options for brain fog that has begun to interfere in functioning on a daily basis. WHen I told my rheumy I went from an A- average to having to drop of fail and descirbed my other symptoms she knew that I had CNS, what really shocked us both was how fast the Imuran made a difference and how fast we can tell the difference when I go off it. I wish you luck, I have a friend- male- who has lupus and is having even more problems CNS/brain fog wise. He has tests every 6 month for skills and IQ because of his profession and some things that happened as a result of brain fog and his scores go down slightly every single time. He is slowly lossing himself because his doctors know he is ill and know what it is but claim he doesn't need treatment since no major organs are involved- I would like to know what they think his brain is.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/29/2008 9:22 PM (GMT -7)   

I was sent to a neurologist in November because of headaches I was having - felt like someone was pounding a railroad spike in my temple and they would last for DAYS...

Rheumy wanted to check on CNS involvement.  When I talked to the neuro - he said that if I had CNS involvement, my brain would "light up like a Christmas tree" on the MRI.  The MRI came out normal.

As for the brain fog:  I've only been dealing with the "official" diagnosis since July - but I can tell you this:  next to the fatigue, the brain fog is what is bothering me the most.  We are talking - I used to be able to multi-task like crazy.  No more.  In fact, if I have any expectation of remembering anything - I have to write it down.  I struggle for the right words...they are in my head - but I can't pull them out.  I end up having to explain what I'm talking about and somebody usually says the word for me.  I look at things, and it will take 15-20 seconds to figure out what it is I'm supposed to do with it.  Last week, I hit my hand on something (and it REALLY hurt)...10 minutes later, I couldn't remember what I hit it on (and still haven't remembered).

I don't know if this helps any.  I think the brain fog is ridiculously frustrating....and scary.  But - doesn't necessarily mean you have CNS involvement.

~Kim


SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 1/29/2008 10:53 PM (GMT -7)   
Carol,

I understand what you mean about what you are experiencing is not the same as fog and people say they know what you mean really dont. It's really scary and disturbing, although like you say some of it is funny. I have done some things that could have had terrible consequences but didn't. I've had to learn new ways to do things, I use timers a LOT so I don't forget what I need to do, I have post its everywhere...you get the idea. I've had MRIs done several times. They found a few lesions (but I don't have MS). They also found some "what matter" and T signal stuff. I'm not sure what all that means, but it helped them with a diagnosis.

If this really concerns you, talk to your rheumy or your GP. A good review of your meds and interactions between them plus the dosages might help too. Take care, ok, sweetie? And let us know what becomes of this.

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/30/2008 10:00 AM (GMT -7)   

I want to thank you all for taking the time to read and share your experiences with me. To tell you the truth I don't even know what CNS means. I guess I'll have to look it up bu than I'll probably just scare the heck out of myself if I knew. I do know that they are going to add more hours to my home care because I am doing some scarey things. I realize that people do forget to turn off the stove fro time to time but I have left mine on several times in the past month. The only reason I noticed is because I walk thru the kitchen a notice that it;s hot in there. I have a plastic dish drainer and it was all melted. That scares me. confused I feel like I'm just loosing it. I read a little about a/i plus brain and it mentioned somthing about a PET scan ?????? not sure what that is either. I'm very very depressed today. I was supposed to go to the rheumy tomorrow but sooner ride was to take me. They pay for the gas and everything. There's no way I could drive. plus it's out of state and this company won't go out of state. So I had to canceal. I just don't have 60 dollars for gas to get there and back if somone else took me. The home health people finally found a rheumy for me that's much closer the soonest I can get it is may 13th! I just wanna cry. I don't want to do this anymore.

but I love you guys!

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/30/2008 1:14 PM (GMT -7)   
Hi Carol,
 
How's your afternoon going?  CNS stands for Central Nervous System.  So for some people, lupus will attack the spinal cord fluid, get into the brain etc.... For most people, it's controlled well with prednisone and immune suppressants.  Don't let this freak you out okay. 
 
A PET scan is similar to a CAT scan I think.
 
Go ahead and cry Carol.  If you feel you need to do that, don't hold it in.  Just let it go.... God gave us that emotional valve to open so we can get rid of that pain and frustration.  I open the valve a lot, LOL.
 
We love you too hon.
 
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/30/2008 8:38 PM (GMT -7)   
Hi Carol,
   I'm sorry your having a rough time right now sweetie...((Hugs)). Like Ginny said, its okay to cry. Sometimes it helps to get it all out.
   I've had several brain MRI's, Catscans, MRA's and Spinal taps. I do have lesions on the brain, hardening of the arteries on the left side of my brain, i've had a lacunar stroke, seizures and my last spinal tap showed 4 positive 0-bands. After all that, I'm doing pretty good. Hang in there and take it one day at a time.
   I do have bad memory problems and balance problems. I've learned to live with the balance problems but, like you the brain fog, memory loss and lack of concentration is the worst. Some days it really gets to me and I have to shed some tears, then I'm okay for awhile.
   I hope and pray things will turn around for you soon. I know its hard when you feel like things can't get any worse. Please take care. Try to rest and relax. Keep us updated. You are in my thoughts and prayers.
                                                 Love ya, Babs
  
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/31/2008 8:50 AM (GMT -7)   
(((((Carol))))) I'm so sorry to hear how depressed you are and that you had to cancel your appointment. May seems like a long time to wait. I wonder if your PCP put in a call if they could get you in sooner. I'm thinking about you and praying that you'll get some relief soon.

Love ya,
hippi
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 1/31/2008 9:06 AM (GMT -7)   
Okie,

I am going for an MRI of the brain on Monday . I also have had a rediculous amount of cognitive issues. I am not exactly sure what the ordering Dr. is looking for but he ordered it ASAP. I had an " episode" in front of him right befire my last surgery. It seems most lupus patients do not show results on an MRI from all the people I have spoken with. We shall see, I will keep you updated.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/31/2008 9:24 AM (GMT -7)   
((((((((Carol))))))))

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 1/31/2008 3:06 PM (GMT -7)   
Like everyone here, I have had/and still do have major physical probs but I also suffer from depression since age 4.
I think Depression is just THE pits! I always know that when the depression isnt there so bad i can deal with most things better, and that is why its the pits.
also being so sick you get depressed cos of that alone, so i suppose we can't win. I have absolutely no answers to this one on the depression. I have found talking to a counsellor helps, it doesnt solve problems but the talking is like a cathartus, oops, spelt wrongly.
I have lesions on the brain, so does twin, and 'white specs' the opinions vary from 'past trauma' to 'don;t know' to Prof. Hughes saying they were vascuar lesions.
as for brain fog, cognitive probs and memory etc - I wont even go there......have it BIG TIME.
Went to a garden centre today and chose a cheese plant, there were only two. Next door I was to have a hearing test which took about ten minutes. I asked the woman to keep it aside.
One was short and stumpy and one long and had lots of leaves.
walked back into the shop, 'Is this the one you were keeping for me" no, the woman said.
I didnt even recognise the plant I had chosen 10min earlier even though I stared, stroked prodded (for white fly!), I still did not know what plant I had chosen.
there you go.
Try pouring milk in the sugar bowl, coffee on cereal, taking over three months to remember a class mates name, a person I really liked.
C!
xAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/31/2008 4:04 PM (GMT -7)   
Carol, I suggest a neurologist ASAP. That might get you seen faster and help quicker. I wish I could offer more help.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/31/2008 8:41 PM (GMT -7)   
Carol,
 
Wow, and MRI that soon eh?  That's wonderful.  Ya, you're right.  Stuff often doesn't show on an MRI for lupus cognitive stuff.  I've been told that too.  At least with this MRI you will have answers either way.
 
Sometimes I notice my cognitive behaviour get worse if I'm feeling anxious.  Are you feeling some anxiety or panic attack moments at all?  Do you feel your heart racing sometimes?  Just trying to help you find a possible cause for all this. 
 
I hope you have a much better sleep tonight, and a positive day tomorrow. (((((hugs))))),
 
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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