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Brain Involvement?


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#1 barefut

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Posted 10 February 2010 - 07:00 PM

I can't wait for my next appointment on March 1st to discuss again, this time seriously, my scary brain malfunctions.

The latest episode, yesterday, on my way home from dropping off my youngest at school, I couldn't remember where my oldest son was! I struggled for probably a full minute trying to remember if he had stayed home from school with one of his migraines, if he had taken the bus or if I had driven him to school. Turned out I had driven him to school not even an hour earlier!

These instances are getting more frequent and more serious. I also completely forgot that I was supposed to pick up my oldest's CT films to take with us to his neurology appointment today. We drove 2 hours one way for this appt and I didn't remember the films until we were more than 1/2 way there.

This is more than occasional absentmindedness. I am completely forgetting major things as well as losing words and names.

Someone tell me this is only menopause (Early? I'm 44) and I'm not losing my mind!

#2 enjoytheride

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Posted 11 February 2010 - 06:11 AM

It could be stress, a vitamin deficiency, medication, etc. But you should have it checked out. All I can say is that I once ran the washing machine 5 (that's 5) times before remembering to put the clothes in it during a period of really bad stress.
No matter what it is, you need to rule out bad things before you're stressing about this too.

#3 Amanda Thorpe

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Posted 11 February 2010 - 10:49 AM

Hello Serena

I loose words, mix them up and walk into a room forgetting what I went into it for and I know from previous topics that many others do also. Could you be feeling this so acutely because you forgot things relating to your children as opposed to something mundane?

Most definitely talk to your doctor about it, in the meantime please bear in mind there could be many reasons for it, as already said, not just sinister ones.

I do hope that your son get some relief from his migraines, as a migraine sufferer myself including as a child, he has my complete sympathy. :emoticon-hug:

Take care.
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#4 ladyhawke

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Posted 11 February 2010 - 01:39 PM

Hi Barefut:
Man, I wish I could tell you some of the things I've done....I thought I was alone and I'm so glad to see your post. Let me just give you one....I'm a wildlife custodian. I no longer work but I volunteer at a wildlife centre and I foster baby raccoons for them here at my home. When we wean them from the bottle, we use chicken. I get the cheapest bulk chicken I can get and boil it. Well I put it on the stove to boil, then I was outside working away and I could smell something and thought the neighbours were burning hay again....I thought man, I wish they wouldn't do that, it stinks. Then I looked at the house....and thought "CHICKEN!!!". I ran for the house and the pot was smoking, the chicken was pure black, and just starting to get a flame to it. I can't even tell you how scared it made me. I actually started shaking. Needless to say, I bought a steamer with a timer on it and don't boil chicken anymore. That is my biggest fear is using the stove and walking away. I've done it a couple of times but never worse than that thank goodness. I could go on and on, forgetting appointments, "important ones".....forgetting lunch dates and leaving my friends sitting at the restaurant wondering where I am. Anyway, I find it quite scary and I now am always second guessing myself on pretty much everything. Did I do this, or did I forget that etc etc. I wonder if it's the drugs? I don't know what you are on, I'm on 150 mg's of imuran and now a low dose of prednisone, but at the time of the chicken incident, I was on a high dose. I'm 53. Would like to know if it's just "getting older" or the disease or the drugs. Who knows? Anyway, you are definately not alone, let us know what the doctor has to say. love & Hugs - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#5 barefut

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Posted 11 February 2010 - 11:39 PM

Thanks so much for your own stories ladies,

I also walk into rooms, open the fridge or pantry and forget why. It's when I forget where I'm supposed to be or where my kids are that's scary!

Here's another - My youngest had been to the urologist for blood in his urine with no aparent reason (no infections/fever/pain). He was scheudled for an ultrasound of his kidneys like a week out and doctor told me not to worry about a recurrance unless his urine was the color of merlot and he developed pain. This I just erased from my mind and took him in for another painless mild occurance of blood thinking that I needed to get that ultrasound ASAP. I called first but the urologist's clinic was closed so I took him in to our family doctor's extended hours clinic. Family doctor got a hold of urologist by phone and repeated his instructions to me. I didn't remember any of what the urologist had said to me until I heard it again from the family doctor. Talk about feeling stupid!

And Yes! I can't trust myself! How hard it is to have to admit that I am not a reliable person for....well anything! I am struggling with that. People must think I'm an idiot and I'm not really! I hate having to second guess myself. I have to give everybody the benefit of the doubt and say well yea, I probably did it/didn't do it/or thought I did it. Just blame any mishaps on me.

Pulling words out of my brain is sometimes like finding a needle in a haystack. I'll go into a long explanation of the word I'm looking for and end up just babbling and losing the entire point of what I was trying to say in the first place.

Names completely escape me. Sometimes names of people very close to me. Or I forget how to spell someone's name. I was emailing a close friend and must have stared at his name for 5 minutes trying to figure out why it didn't look right. I had completely lost the letter "i" and had replaced it with "Y". I didn't figure it out until I looked at it again the next day.

So, where's my trademark emoticon....... :wacko: There. I might as well just sign my name with him from now on.

#6 erika

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Posted 12 February 2010 - 12:44 AM

Forgetting things, this has always been a part of my life. When having allergies everything was foggy and seemed to be in the distance. Recovering from allergies was like lifting up the curtain. Had no problem remembering things. Now again. My thoughts are dedicated mostly to the disease, everything else seems unimportant. I do my daily work automatically, don't care about it, forget what I did immediately... I make notes when I have meetings, write everything down. Otherwise: disaster. The only things I can remember are the doctor's appointment, when the medicines arrive and similar. This is my world now. Other things vanished.
My brain is overloaded with new survival issues. Has to assimilate loads of new information like: ANA, Scl70 or the other one (cant remember the name :rolleyes: ), Plaquenil, CREST, diffuse, skin involvement, PAH...etc.etc. The most demanding and stressful is daily discovering new symptoms. (My hands and face are lifting.) And at the same time endlessly waiting for doctors appointment to get the diagnosis. Can not think about anything else.

Keep remembering.

Erika

#7 Sweet

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Posted 12 February 2010 - 11:33 AM

Hi Barefut,

I was just talking about this with my rheumatologist yesterday. I explained some of my scenarios. He asked how I was sleeping. I said "sleep? what's that". I don't sleep well, and on top of that most nights I have to take something for sleep. (and still don't sleep) He stated that sleep deprivation alone would cause my problems, but also sleep aids mess with the memory. He assured me my brain was OK, and that I didn't have early onset Alzheimer's.

Hang in there baby!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 erika

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Posted 13 February 2010 - 07:03 AM

I found in one medical article on these pages that Ginko is good for Raynaud's sufferers, but it is good for the brain circulation and memory also. I take one pill daily and my hands are warmer, hope it affects the brain in positive way as well.

Remember important, forget the rest!

Erika

#9 epasen

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Posted 14 February 2010 - 11:50 PM

Hi there,

Last summer when I participated EULAR Annual Congress of Rheumatology I learned one thing: Scleroderma itself has never affected anyone's brain. So probably this forgetting of things is something much easier to handle, and I know you wise ladies are not losing your minds. :)

Hugs,
Emmi

#10 erika

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Posted 16 February 2010 - 02:17 AM

Emmi, it is very comforting that SC does not attack brain! :emoticons-yes:
Erika

#11 Buttons

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Posted 16 February 2010 - 09:04 AM

Hi Barefoot

I can understand what you are going through. I do forget things and also end up going back to check I've done something like locking my car or shutting the garage door, I've put mine down to just 'my age' (almost 54) but went through the menopause when I was 36-41. I do get some strange things going on as well like my vision kind of blurring and numbness in the side of my neck, I've had a MRI scan done a couple of years ago and was told I had normal age related changes. It still worries me when I get these 'attacks'.

I think we all do daft things at times especially when we're tired or stressed.

You take care

Buttons

#12 Shelley Ensz

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Posted 18 February 2010 - 01:12 PM

Hi Barefut,

We do have a section on the main site, Scleroderma Brain (Cerebral) Involvement. It covers many items that can affect the brain in systemic sclerosis, as well as with linear scleroderma. Some items include vasculopathy, strokes, central neuroaxonal impairment, cognitive impairment, vascular headaches, and even progressive brain atrophy (that last one is associated with linear scleroderma that affects the head.)

So, unfortunately, there are any number of issues that your medical team (preferably your scleroderma expert) should be exploring and, hopefully, ruling out.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#13 smac0719

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Posted 21 February 2010 - 03:03 PM

Barefut,

This reminds me of a post we had about this subject last year some time. I too have become very forgetful. If it is not added to my calendar or written down, forget it...literally! I have forgotten children, appointments, food cooking, what I was doing, where I was going, etc.

We are about the same age and I too wondered if I was pre-menopausal. The forgetfulness worried me a lot, but I do very well when I "remember" to make a list or put things on my calendar. I try to write down appointments as soon as I make them. I keep a note pad in my purse, car, kitchen and office so when a thought comes to mind I can write it down. I then transfer it to my planner which I keep with me at all times. I also send myself reminder emails at home and work.

You are not alone.
I may have Scleroderma, but Scleroderma doesn't have me!

#14 barefut

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Posted 21 February 2010 - 10:29 PM

Turns out my next appointment with my rheumatologist is not until MAY 1, not March 1 !!! :wacko:

I called to reschedule because my kids have no school March 1 and I don't have a sitter. They told me, "We don't have you in until May 1." Oh well, I was close - they both start with an "M"!

Now if I had found a sitter and driven 2 and a half hours and spent $30 on ferry, $8 on parking and about another $30 on gas, shown up at the reception desk to be told that I didn't have an appointment until MAY, I would have just had myself committed right then and there.

Smac, I too wonder if it's menopause. I also send myself emails but they usually come back "undeliverable"! :blink:

I'd better see if my rheumatologist has anything sooner before I burn the house down or something.