Old 08-23-2007, 02:15 AM #1 (permalink)
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Default Problems with memory

Has anyone had problems with memory? It started about a month ago I noticed I would really have to concentrate on what I was saying and now at times I have trouble spelling or thinking of words. Writing in my journal is more difficult even posting on here I have to look over a few times to make sure it makes sense. I am so scared as I mentioned to mamaoftwo I was at gp today. He noticed more muscle loss in the hands and forearms and in the tongue. Mentioned homecare to help me with housekeeping. I mentioned I was finding it more diificult to pul myself out of the tub he mentioned having someone come in for a lower tub, but I told him I don't need it yet. Anyways that would be too scarey to have to make changes to my home, I'm just not ready for that yet. Evevn as I write this I can't believe at 31 I'm writing this. Even though I am so sick I still like to pretend I'm still the strong 31 year old I was just over a year ago when all this started. In Canada we have to be referred by gp but he said it should be very soon to see this head neuro. Hope it's not als, but I'm pretty sure this will be a quick diagnosis of something neuromuscular as with my hands, fingers, arms, tongue it is very visible to see there is a problem. I have been ill for 14 months now, but the last three the muscle loss is very obvious. Oh how I don't want to believe it. I can try to cope with loss of body, but mind, I hope this memory thing does not get worse. Anyhow if my posting start to not make sense or my spelling becomes like a child's just ignore it as my brain seems to not want to function as per usual. Mya
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Old 08-23-2007, 07:37 AM #2 (permalink)
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I noticed I have a hard time concentrating and have a problem spelling word , but I think that all from being depressed and worried and preoccupied with our problems. I hear antidepressive drups helps. I may try them
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Old 08-23-2007, 08:23 AM #3 (permalink)
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Mya --- Id be interested to hear what other PALS say about this because as I understand it, cognitive function normally remains intact with ALS. Perhaps this symptom points away from it being ALS which would obviously be a good thing.
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Old 08-23-2007, 09:02 AM #4 (permalink)
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Quote:
Originally Posted by myooshka
Has anyone had problems with memory? It started about a month ago I noticed I would really have to concentrate on what I was saying and now at times I have trouble spelling or thinking of words. Writing in my journal is more difficult even posting on here I have to look over a few times to make sure it makes sense. I am so scared as I mentioned to mamaoftwo I was at gp today. He noticed more muscle loss in the hands and forearms and in the tongue. Mentioned homecare to help me with housekeeping. I mentioned I was finding it more diificult to pul myself out of the tub he mentioned having someone come in for a lower tub, but I told him I don't need it yet. Anyways that would be too scarey to have to make changes to my home, I'm just not ready for that yet. Evevn as I write this I can't believe at 31 I'm writing this. Even though I am so sick I still like to pretend I'm still the strong 31 year old I was just over a year ago when all this started. In Canada we have to be referred by gp but he said it should be very soon to see this head neuro. Hope it's not als, but I'm pretty sure this will be a quick diagnosis of something neuromuscular as with my hands, fingers, arms, tongue it is very visible to see there is a problem. I have been ill for 14 months now, but the last three the muscle loss is very obvious. Oh how I don't want to believe it. I can try to cope with loss of body, but mind, I hope this memory thing does not get worse. Anyhow if my posting start to not make sense or my spelling becomes like a child's just ignore it as my brain seems to not want to function as per usual. Mya

myo----I am so sorry to hear that you are having problems with your memory. That sounds so devastating. I remember, my dear son towards the end, he couldn't even hold a pen. Whenever he tried to write something on a piece of paper, he would just scribble, and so faintly. I always tried to do my best to read his little notes without asking him what it was. It made me feel so bad. I could see the despair in my son. Als is such an ugly disease! My baby felt so bad when his body started to change. He hated it, but like he used to say, it's part of that dreadful disease. My son he was such a looker, he always liked to look his best, and that is how I want to remember him. His body changed so, but his face really didn't look that bad, it didn't look distorted or anything. His hands atrophied pretty bad, while his fingers curled a little. He lost quite a bit of weight. All I can say is God bless these folks, may He have a special place for these folks. You take care of yourself, sweetie, and don't leave us. May God bless you!

xoxoxo,
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Old 08-23-2007, 09:44 AM #5 (permalink)
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Unhappy Now what was it that I was going to write?

Oh yes memory. I blame mine on old age as I'm 60 soon to be 61 in September.

I really don't associate the memory problems I am having with ALS, but maybe it is somehow related.

I cannot remember what month it is, what day of the week, and the names of some of my grandchildren when I see them. I have 15, I think? Seriously! I have trouble telling you what I did yesterday, or any day this week for that matter.

It has seemed to be getting worse as time passes and the ALS progresses. I think some of it must be related to depression and stress about the future. The mind is a terrible thing to waste and I am obviously wasting mine at times.

It's funny when either of my 2 sisters come over and we talk about things that happened over 50 years ago, I can remember them, but not yesterday?

God Bless
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Quote:
Originally Posted by myooshka
Has anyone had problems with memory? It started about a month ago I noticed I would really have to concentrate on what I was saying and now at times I have trouble spelling or thinking of words. Writing in my journal is more difficult even posting on here I have to look over a few times to make sure it makes sense. I am so scared as I mentioned to mamaoftwo I was at gp today. He noticed more muscle loss in the hands and forearms and in the tongue. Mentioned homecare to help me with housekeeping. I mentioned I was finding it more diificult to pul myself out of the tub he mentioned having someone come in for a lower tub, but I told him I don't need it yet. Anyways that would be too scarey to have to make changes to my home, I'm just not ready for that yet. Evevn as I write this I can't believe at 31 I'm writing this. Even though I am so sick I still like to pretend I'm still the strong 31 year old I was just over a year ago when all this started. In Canada we have to be referred by gp but he said it should be very soon to see this head neuro. Hope it's not als, but I'm pretty sure this will be a quick diagnosis of something neuromuscular as with my hands, fingers, arms, tongue it is very visible to see there is a problem. I have been ill for 14 months now, but the last three the muscle loss is very obvious. Oh how I don't want to believe it. I can try to cope with loss of body, but mind, I hope this memory thing does not get worse. Anyhow if my posting start to not make sense or my spelling becomes like a child's just ignore it as my brain seems to not want to function as per usual. Mya
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Old 08-23-2007, 10:00 AM #6 (permalink)
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I've been labeled "Mr. Forgetful" at work....this has been for years.

My ST memory is gone.....

I apportioned it to the medical marijuana used to abuse before you needed a prescription for it...lol...

i have "grew" up since then..but since all this happened..i was thinking of asking for another prescription...

Just joking..lol...."not about the memory".
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Old 08-23-2007, 10:08 AM #7 (permalink)
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Quote:
Originally Posted by Jamiet
I've been labeled "Mr. Forgetful" at work....this has been for years.

My ST memory is gone.....

I apportioned it to the medical marijuana used to abuse before you needed a prescription for it...lol...

i have "grew" up since then..but since all this happened..i was thinking of asking for another prescription...

Just joking..lol...."not about the memory".
Hi Jamie! How have you been doing? Been to Houston lately? (For a visit, that is!) It is hot here in Tomball! I don't step outdoors, unless I have something to do! LOL Any news yet? Been praying for you guys!

Irma
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Old 08-23-2007, 12:19 PM #8 (permalink)
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i'm OK. They released me in houston, based upon the muscle biopsy. I saw a lyme doctor, as my ELISA was positive, but teh follow up test was negative.

I did a round of antibiotics and they made me progress really fast.

I just think my dr's in houston released me early, we are missing something here. It's good news she doesn't think this is ALS, but i have something mimicing it very closely this is not all in my head and, it's really hard not having much support around you, when everybody is listening 100% to the doctors, so they start to question you if you are telling the truth.

Life is miserable, but, i'm pushing forward, enjoying my kids and wife as much as i can. It could be worse, so i won't complain.

take care,

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Old 08-23-2007, 04:05 PM #9 (permalink)
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This memory thing is more than stress, I have always been forgetful, this is different. And I read memory can be affected in up to 30% of ALS cases. It is not just stress I know what that feels like to be forgetful cause of stress. This is like last night we had supper, an hour later I asked what we were going to have for dinner. I feel I am losing myself.
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Old 08-23-2007, 09:01 PM #10 (permalink)
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I've had very slight problems with mixing up words occasionally or not pronouncing a word in it's entirety. Also have caught myself grasping for names of co-workers that I work with fairly regularly. Not major.. I'm still able to do complex work, keep a tremendous amount of information in my head easily accessible, etc. Just seems to be silly things at times. I think my wife is noticing it more than I am. I've always sort of been the absent minded professor type, so I don't know if it's just that I'm noticing it more now because I'm alert for changes/problems.

For now I'm just blaming it on Baclofen.. I take 30mg a day, down from 40mg a few weeks ago. "Baclofen can cause side effects that may impair your thinking or reactions. " according to drugs.com. I have all (or mostly all) upper motor neuron disease & have been taking Baclofen since Feb of this year which seems to be roughly when I started to have silly memory hiccups.
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Old 08-24-2007, 07:56 AM #11 (permalink)
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Post Maybe memory loss is drug side effect?

I hadn't thought of the Baclofen. I guess that is as good a thing as any to blame it on, anything besides I'm just getting old.

Hang in there Jamie. It must be soooo frustrating. I'm praying for you buddy, that they can find what it is and treat it and no ALS. It's a good sign that the biopsy was negative.

When I was a child I use to stutter. By the time I was about 14, it just went away on it's own. Now, I find it's back sometimes when I'm hurting bad? Must be something affecting my brain with the loss of short term memory, etc. Just another ALS mystery. Geez, why do there have to be so many?

God Bless
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Old 08-24-2007, 09:28 AM #12 (permalink)
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I've had confusion and memory problems for over six years. When I couldn't remember how to put my denture back in my mouth is when I first went to doctor....that was really scary. After the cat scan, mri and spect scan....showing abnormal shrinkage of frontal lobes, is when I got the diagnosis of frontotemporal dementia. As you know research is now showing FTD and ALS are being caused by the same buildup of the protein TDP-43...in the brain causing FTD, and in the spine, causing ALS.
With FTD, there is no real memory loss, as the hippocampus is not affected as yet, but there is confusion in trying to speak, write, and perform household tasks. The key is do everything very slowly. I'm also on aricept and ebixa (namenda in the States), which help tremendously with the confusion.
I saw my Neuro at Sunnybrook on Wed.....she's increasing my gabapentin to 2400 mg...and weaning me off the baclofen...as that tends to add to the brain problems. I'm still having the cramps at night! Can you picture me dancing around the room in my nightie at 2, 3 and 4am? he he
I'm now being referred to the ALS Research Clinic at Sunnybrook in Toronto.....this could be a wait of up to two months I'm told.
For any of you experiencing the confusion...I would really recommend seeing a neuro...cause it could be FTD....and the meds are so great!
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