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Old 10-12-2009, 03:07 AM   #1
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Question Brain atrophy suffer. Help I need some input and guidance

Hi I'm waynel and new to not only this thread but to this website and I am looking for support and help on issues I am and have encountered. I am 63 and had brain atrophy for 6 years but it was only diagnosed 2 years ago. It started with seizures where I would loss all strength in my arms and legs and collapse wherever I may be. I did even fall in intersections and in my home and broke ribs and other physical damage from each attack. It took me 3 years for my DR to believe me and he just wrote it off as probable drug interaction until I was finally sent to a neruologist and through usual tests was diagnosed with brain atrophy. That was 2 years ago. My neurologist from the start didn't seem to have his heart in it and never prescribed an meds or even answered all the questions I had about the condition. I'm in the process of getting a second opinion. I was sent for Alzheimer testing and the Dr said the results indicated not Alzheimers, but he couldn't to this day explain the falling seizures, lack of memory, concentration and at times, I didn't even know where I was. The first time I took the Alzheimer tests at the neurologists office I failed miserably but at the Alzheimers clinic I passed with flying colors and showed no signs of the disease. I need help because I am very concerned and really don't know what is going on. Drs here in Ottawa seem to treat me like I'm a hyphondriace although they know I have brain atrophy and they don't seem to really care about my quesitons or concerns. I live alone and feel if I fell and hit my head as I once did, I might do irrepreble damage to myself.

Any suggestions of what I should do? God, I have read medical articles noting that brain atrophy is the 1st stage of Alzhiemers and other articles say it is a distinct disease. First, the one basic question I have is: "Is brain atrophy actually the 1st stage of the onset of Alzheimers? And if anyone can help me with the other problems I am experiencing I gladly would like your input.

Sorry for such a long dissertation but this is my first entry and the first tendency is to give one's life history about dealing with such a disease. I need your help and guidance because I am very afraid and feel I have done so much reading about my conditon, that whenever I ask my Dr a question and bring a print out related to it, he just ignores it completely and what I have asked. I am looking forward to some input to guide me, not because I can't, but because I'm confused and don't know what to do next.

 
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Old 10-12-2009, 04:55 PM   #2
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Re: Brain atrophy suffer. Help I need some input and guidance

Why don't you go ot the Alzheimer's board and ask what they have experienced. I also have some brain atrophy and no one knows why(I'm 58). Neuro told me it just may be a finding that no one can figure out as it wasn't causing any symptoms.....but it is being watched. I see him Wednesday.

So go ask the folks who are dealing with Alzheimers and ask them.

gentle hugs.............Jenny

 
Old 10-13-2009, 02:23 AM   #3
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Re: Brain atrophy suffer. Help I need some input and guidance

Hi Jen. Thanks for the referral to Alzheimer site but I have done so much research about Alzheimers on the web and groups that no one to date seems to have answers to my questions. I appreciate your concern and feedback and big hug back at ya!! Thanks

 
Old 10-13-2009, 03:36 PM   #4
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Re: Brain atrophy suffer. Help I need some input and guidance

hi Wayne
First of all did they check your B12 level?This is very important...low B12 can cause brain atrophy which is modifiable with vitamin B12 therapy.I have had this.I showed mild brain atrophy in 1999 and then was found to have a hidden B12 deficiency.My B12 level was "low normal",but they did an MMA test which showed my methylmalonic acid was very very high...which pointed to what they call an "occult B12 deficiency".

You might be having "brain fog" which is a symptom of low B12.I am concerned about your episodes of severe weakness,falling down....that is something that a dr. should be looking into.I know drs. these days don't give a care about patients....you hear it so often.Don't give up...keep voicing your concerns to any dr. that will listen to you.

Please post back Wayne~I care~
Scout~

 
Old 10-14-2009, 02:48 AM   #5
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Re: Brain atrophy suffer. Help I need some input and guidance

Thanks for replying Scout I really appreciate it. Your right about some DRs. Through all my readings on the web I came across the reference to B16 and on my own initiative went out and talked to my pharmacist and bought high potency B16 complex. That was about 8 months ago, and I did notice a bit of improvement in my cognitive abilities: memory, problem solving etc. But shouldn't the Drs be aware of testing me for this initially? I have never been told even though I persist, what type of brain atrophy I have: general or what part of the brain is affected. I just don't know why they don't just answer my questions? I am learning more from web readings and sources like this website thread than I am from Drs. What really hurt is my oldest daughter just got married and I feel all 3 of my daughters were ashamed of me and it seemed a plan was devised by them so I wouldn't make any scene. At the reception, as soon as the dancing started my middle daughter said come on dad I'll drive you back to your hotel. I ask why and was never given a reason. I felt so bad that I wrote my middle daughter who wasn't getting married about my feelings and that I felt like I was a social emabarassment to all of them. This hurt me deeply. She told me dad, you ramble on and keep repeating the same things over and over again, and went into other aspects of my diseased behaviour. I told her love for a father should be unconditional and I felt like I was a social embarassment to all 3 daughters. I told them if they loved me conditionally, then I want nothing to do with them in the future if that is the way they felt. Thay tried to make excuses and said they were worried about me but I felt deeply that all was all BS and I was a social embarassment to them. I am saying all this because this condition is now starting to tear my family apart. I was divorced 20 years ago and was a university professor and spoke at many conferences. This I think is how they think of me, and don't accept all the abilities I have lost over that period of time. It is tearing my family apart from me and I am feeling more alone and misunderstood as each day passes. I really appreciate our concern, I really do, but even the Drs seem to treat me the same way:: the more I inisist on getting answers to my quesitions, the more they ignore me. What the h--ll is wrong with people today. I guess you have to suffer the disease to know its full impact. But I am taking your advice and pressing the Drs each time I see them but I am wearing down after 2 years of asking questions that are never answered and being shuffled on to another Dr for more tests or Drs in other fields. I am almost at my wits end. I mean after 2 years you would think they would have at least tell me what type of brain atrophy it is and prescribe something. I keep asking about my falling seizures and they just place hand on chin, and shake their heads and that's about it. No further in depth testing or anything. Again, thank you so much for caring; it seems the only people that do care are people you meet online in groups like this.

 
Old 10-14-2009, 08:02 AM   #6
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Re: Brain atrophy suffer. Help I need some input and guidance

hi Wayne
If you can ty to get a copy of your brain MRI report.I noticed that you are in Canada so I'm not familiar with their medical ways,but here in te United States you have the right to have a copy of any test you have.
Did you mean B12...you wrote you took B16?I never heard of B16.....but really I'm wondering if you need B12 injections....most drs. don't bother to check patients B12 levels.Also as we get older we don't absorb B12 that well...this could be so in your case.
Is there a chance you could possibly get in to see a hematologist?They are blood drs. and will listen to all your symptoms and check things that have to do with your blood....a hematologist is the dr. that found my B12 problem while my regular dr. said he "couldn't find anything" wrong with me.So don't give up...you need to keep trying...you know you're not well and your body is telling you something is not right...so don't let those crummy drs. make you feel like your a nutcase,okay?
As for your daughters...that is truly a shame.My dad passed away at age 64 and there wasn't anything me & my six sisters and 1 brither woyuldn't do for him.Excuse me Wayne,but your girls are acting very selfish if I may say so.Why aren't they giving you some emotional support and helping you find out what is going on with your health?Are they too busy to care?That is really sad...but sometimes strangers will give you more compassion then family....that seems to happen a lot these days.
Anyways try to get copies of your test reports,okay?Also think about seeing a hematologist if possible....

have a good day~
Scout~

 
Old 10-14-2009, 08:46 AM   #7
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Re: Brain atrophy suffer. Help I need some input and guidance

Scout...thanks for the info on the B12. I started is about 3 weeks ago after developing dislocating joints in my left arm. I broke my neck 3 years ago and my left arm was partially paralyzed. I worked really hard to get all the function back only to develop numbness and these dislocations in August. My doc suspected the nerves were going despite all the rehab and the muscles were relaxing too much and allowing the dislocations. So he told me to see my neurologist which I'm doing this afternoon. And he added Vit. B6. since the B12 seems to help. With the 2 vitamins, a lot of the numbness has gone but the dislocations continue. I guess the neuro will start EMG testing and other tests to see if it's related to the broken neck or something different.

It was also after my neck that I had an MRI showing atrophy.

You've given me a new avenue to approach the docs with. Thanks...and I'll keep taking my B 6and 12.

Jenny

 
Old 10-14-2009, 10:28 AM   #8
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Re: Brain atrophy suffer. Help I need some input and guidance

hi Jenny

thank you for your post...as I was telling Wayne B12 is very important....it is crucial to your central nervous system and because you suffered a broken neck in the past I'm sure B12 will help you.There is something called sub-acute degeneration of the spinal cord which I think can be dx by an MRI...this can cause problems with your B12 level.
Symptoms of low B12 are numerous and neurological...I'll list them here:

muscle weakness
fatigue
parathesis(pins 'n needles feeling in hands/feet)
loss of appetite
sore tongue(sometimes glossy & red)
trouble breathing
memory loss
confusion(disorientation)
irritability
paranoia
depression
dementia
impaired vibration or position sense
impaired pain or touch perception
ataxia
abnormal gait(walk)
decreased reflexes
vision/taste impairment
urinary/fecal incontinence
Lhermitte's sign(sudden electric-like shocks down the spine...especially when flexing head)
positive Romberg's sign(increased unsteadiness on feet when eyes are closed)
tinnitus(ringing,buzzing sound in ear/s)
brain atrophy(modifiable with B12 shots)

I think that's about all of them....also not everyone will have all these symptoms,but more than likely will experience most of them to some degree.

Wayne maybe you could make a complete list of your symptoms and see if they relate to the symptoms that I posted for low B12.
Have a good day....and nice to meet you Jenny!

Scout~

 
Old 10-14-2009, 11:29 PM   #9
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Re: Brain atrophy suffer. Help I need some input and guidance

Dear Waynel,

I just want to say that B12 deficiency could be something to look into. I go to a B12 deficiency board where some of the members were losing neurological functions, getting personality changes, forgetting their thoughts in mid-stream and B12 eventually fixed the problem. Not saying this is the cause of your brain atrophy, but it wouldn't hurt to look into it.

 
Old 10-16-2009, 02:29 AM   #10
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Re: Brain atrophy suffer. Help I need some input and guidance

Quote:
Originally Posted by scout316 View Post
hi Wayne
First of all did they check your B12 level?This is very important...low B12 can cause brain atrophy which is modifiable with vitamin B12 therapy.I have had this.I showed mild brain atrophy in 1999 and then was found to have a hidden B12 deficiency.My B12 level was "low normal",but they did an MMA test which showed my methylmalonic acid was very very high...which pointed to what they call an "occult B12 deficiency".

You might be having "brain fog" which is a symptom of low B12.I am concerned about your episodes of severe weakness,falling down....that is something that a dr. should be looking into.I know drs. these days don't give a care about patients....you hear it so often.Don't give up...keep voicing your concerns to any dr. that will listen to you.

Please post back Wayne~I care~
Scout~

 
Old 10-16-2009, 02:47 AM   #11
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Re: Brain atrophy suffer. Help I need some input and guidance

HI Scout, thanks for the reply. I made a mistake in fact it was the one you recommended B12, sorry about that. I have had extensive blood workup over the past two years and on a regular basis each month or so. Each time the results come back the DR says everything is absolutely normal; they have tested virtually every part of my chemical makeup from foic acid, tryglycerites to you name it, and each test comes back compeletly normal. So under these circumstances I don't think I need B injections because testing shows all vitamin etc are normal. That's the dilemma, they just can't seem to find out what is going on about my falling muscle atrophic attacks. Drs have told me all MRis, Catscans, EEGs, blood work etc doesn't point to a specific reason why I am having the attacks although they do acknowlege I am having them. So I am at a loss as well. What do I try next? A Voodo DR? You are also right about my grown daughters and I am glad you were honest enough to voice what I was feeling inside. If I embarrass them, then to hell with them. I should mention that their were wee ones when I divorced 20 years ago and were raised by their mother. So, I didn't really have a lot of contact with them over those years as I moved to another city. So maybe that's why they don't feel close to me as much as I thought they should be. Who knows? Anyway not to harp on that theme anymore, thanks for the support and if you have any suggestions please keep in touch. Thanks again Scout.
Wayne

 
Old 10-16-2009, 11:00 AM   #12
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Re: Brain atrophy suffer. Help I need some input and guidance

hey Wayne

If I may ask you what was your B12 level?Do you have copies of your lab results?Many drs. will do a "CBC" and say you're fine....I'm really wondering what your B12 level is,because you have many symptoms of low B12.Most labs say a normal level of B12 is 200-1100,but under 400 will many times present with neurological symptoms and warrant an MMA test which shows B12 deficiency at the tissue level.

I don't want to keep pushing the B12 thing,but drs. have been saying people are fine as long as their B12 is at least 200...not so.....I hope this is not your case.

Did you look at the list of low B12 symptoms I posted on this thread?I'm just concerned that you might be suffering from low B12 and your drs. are missing it.

So please post yur B12 level results if you know them...if you don't know what your B12 level is then I'd suggest you get copies of all your lab results as soon as possible.There are many caring people on these boards who would be more than happy to take a look at your test results and give you some excellent feedback.

Have a good weekend~
Scout~

 
Old 10-17-2009, 06:02 AM   #13
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Re: Brain atrophy suffer. Help I need some input and guidance

Thanks for the reply Scout. Actually I really don't know if they did a separate test for my B12 level; they may as you say have just done a general testing of items and not a specific B12 test in itself. Good point, the next visit with my Dr I will ask about my exact B12 levels if he has them and if not, I will ask that he test my B12 independently to get results. You are obviously more knowledgeable than I about B12 deficiency so I will insist the Dr setup such a test. Thank you very much, you instill a sense of determination in me that is enlightening me in demanding from Drs rather than acquiece to just what they tell me or the tests they do. Thanks for that also. Just to ask, how are you feeling? Ok I hope?

Have a nice weekend too, and keep in touch.

Wayne L

 
Old 11-24-2009, 11:10 AM   #14
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Re: Brain atrophy suffer. Help I need some input and guidance

Quote:
Originally Posted by waynel View Post
Hi I'm waynel and new to not only this thread but to this website and I am looking for support and help on issues I am and have encountered. I am 63 and had brain atrophy for 6 years but it was only diagnosed 2 years ago. It started with seizures where I would loss all strength in my arms and legs and collapse wherever I may be. I did even fall in intersections and in my home and broke ribs and other physical damage from each attack. It took me 3 years for my DR to believe me and he just wrote it off as probable drug interaction until I was finally sent to a neruologist and through usual tests was diagnosed with brain atrophy. That was 2 years ago. My neurologist from the start didn't seem to have his heart in it and never prescribed an meds or even answered all the questions I had about the condition. I'm in the process of getting a second opinion. I was sent for Alzheimer testing and the Dr said the results indicated not Alzheimers, but he couldn't to this day explain the falling seizures, lack of memory, concentration and at times, I didn't even know where I was. The first time I took the Alzheimer tests at the neurologists office I failed miserably but at the Alzheimers clinic I passed with flying colors and showed no signs of the disease. I need help because I am very concerned and really don't know what is going on. Drs here in Ottawa seem to treat me like I'm a hyphondriace although they know I have brain atrophy and they don't seem to really care about my quesitons or concerns. I live alone and feel if I fell and hit my head as I once did, I might do irrepreble damage to myself.

Any suggestions of what I should do? God, I have read medical articles noting that brain atrophy is the 1st stage of Alzhiemers and other articles say it is a distinct disease. First, the one basic question I have is: "Is brain atrophy actually the 1st stage of the onset of Alzheimers? And if anyone can help me with the other problems I am experiencing I gladly would like your input.

Sorry for such a long dissertation but this is my first entry and the first tendency is to give one's life history about dealing with such a disease. I need your help and guidance because I am very afraid and feel I have done so much reading about my conditon, that whenever I ask my Dr a question and bring a print out related to it, he just ignores it completely and what I have asked. I am looking forward to some input to guide me, not because I can't, but because I'm confused and don't know what to do next.
(I wentto China for stemcells that did nothing then found a sight for B12 defisency am trying that now mabe you should look into that now?

 
Old 05-04-2010, 06:04 AM   #15
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Thumbs up Re: Brain atrophy suffer. Help I need some input and guidance

HI my name is Jane and I have a brother with Brain Atrophy he was diagnosed just over 12 months ago after suffering what we thought was a stroke.
My brothers name is Royston and he will be 60 years old in October 2010

He has good days and he has bad days

He no longer drinks smokes or drives


My brother and his wife were told this is a result of Roystons drinking habits from years ago .I am afraid he did rather like his beer and yes we have been told this is a degenerative desease of the brain :

 
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