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[QUOTE=emmaspaws;3762128]Thank you Rainbows End...I just spoke to the doc at the ALF and he basically told me that I am in denial about my moms dementia and that I need to accept this. Okay, then please tell me why NONE of the Benzodiazepines (Xanax, Ativan, etc.) have helped her nerves or shaking. She is in a constant state of Anxiety and can't tell me why she's shaking! She walks around like she is in a daze and only speaks when spoken to and VERY softly. This is a woman in her mid 60's who just a year ago was living by herself, had her own business, cute sporty car, always looked nice, etc. Now she walks around hunched over and looks like she could be 80!!! It is so sad and I just can't stand for her to be in such turmoil. If I can help get rid of her anxiety or at least help it, then I wouldn't care if she could remember my name! Which, she does know by the way! Thanks for the help![/QUOTE]

Hi There emmaspaws

Oh I am really sorry to hear about your run in with the doc however it is not surprising.......
I agree you are not in denial (they think they know it all dont they) you are wanting to help your mum I think the fact that if you are right he is wrong and we cant have that can we LOL.....
Vever miond the fcat that dementia can be caused by a B12 deficiency in the first place and that is caused by something else you dont just get it for nothing......Any one of your mums age presenting with those symptoms needs a B12 test it is wrong to deny her that...
I agree with the preceding statement fire the doc and hir a new one you may need to do this s few times but i think it is a option worth considering......

She certainly has the symptoms...Are you able to get copies of all the bloods shes ever had to see if they have taken B12..........
As I said they are obliged to take a B12 with neuro symptoms you could put that to him...You could say ok if you are right then ok your right but lets check anyway we have nothing to loose...And if I am right perhaps we can help my mum"...Or well if your right the B12 tests will be normal and your right but what if your wrong" Sometimes we need to be bold and persistant this is the only thing that worked for me.....There is plenty info out there about your mums symptoms and b12 take it to him annoy him persist demand if you have to........
If there is a deficiency none of those meds are going to do much at all...What did he say when you said that to him ...about the meds not working

Please keep trying I know you will any way I can detect some very strong determination your mum is lucky to have you there and I am sure she appreciates what you are doing you have to try dont you.....

If she has a B12 deficeincy the type of b12 is crucial and the amount as well to get the symptoms healed all haltered at the least.....

You could try using the subs if you cant get any doc to acknowledge you but i feel it is important to find out why she has it.......

If you can get copies of those bloods even FBC post the results I would love to see them........

The very best of luck go for it I am thinking of you

Cheers
Rainbows End
Hi Bethesba, thanks for the support. yes, I can give you more details. It started back in September of '07 when she was complaining of severe stomach pains and the doctor diagnosed her with H Pylori and GERD. He put her on Nexium, CIPRO and was on Omeprazole as well. These are all stomach meds and she started on them in March '07. In April she was put on Phenazopyridine for her frequent Urinary Track Infections, which she got probably once a quarter for the last two years. In May he put her prednizone (not sure what that was for). In October just as the anxiety attacks started coming, she started taking Tetracycline for her H Pylori. The doctor put her on samples of Lexapro for the anxiety/depression as well as 1.5mg Xanax per day and she was taking Metoclopramide HCL for Stomach problems. When she complained that the anxiety wasn't going away and the stomach problems weren't resolved, he increased her Xanax to 3mg per day(double!). She was only 117lbs and 5'2". Petite little thing! While visiting one day, she was so lethargic and couldn't speak, so I took her to the hospital (it was a Saturday and her doc wasn't available). She was told that she was on too much Xanax and gave her fluids. The Nurse Practitioner in the ER said to stop taking the Xanax immediately and that she needed to see a Psychiatrist. (we had an appt. for the next day). She was in the ER all day and I am guessing went through withdrawal...by the time we got home that evening, she was angry, talking about secrets she had kept from our family all my life, almost suicidal. We took her to the Psych ER at the hospital and she was so violent that we had to Baker Act her and she tried to kill herself because they put her in a very small room and she is VERY claustrophobic. The Psychiatrist in the hospital the next day (without taking a family history by the way) diagnosed my mom as Schizophrenic! Say what???? We were apalled and totally helpless. Now she was locked up and they started giving her Haldol, Geodon, Prolixin Dec, not to mention Folvite (not sure why) and Prilosec, Nexium, Pepto Bismol, Mylanta!!! The list goes on and on. She went crazy after a week of being on all that stuff! This lady (aside from the stomach meds she started taking in '07) had never had to take medicines for depression, anxiety, never showed any signs of being Schizophrenic, etc.

AFter two weeks of being in that place, we got her in to see another pyschiatrist and he took her off the Geodon and Haldol and put her on Risperdal, Ambien for sleep, Klonipin for anxiety. Nothing, I repeat nothing even touched her shaking and nervousness. She has been in and out of hosoitals even through December. She was admitted on the Neurology ward for one week and had CT scan and MRI and saw a psychologist while there. They left there not knowing any more than going in. She was diagnosed with depression. While taking the Klonipin, she started losing some cognitive function (she insisted that the frozen meals were raw and that she didn't know how to cook them in the microwave). After telling her it was already cooked, she kept arguing with me...but how do I know it's cooked??? That was the first sign of memory loss. Her next Psychiatrist claimed that the Klonipin has been making her lose her memory and then prescribed Paxil for her anxiety. BIG MISTAKE!!! She then went ballistic and told my sister that the voices told her she had to kill her. We panicked and got her doctor to admit her into a different hospital for her safety. She was there or two weeks and was put on Seroquel and many other meds for her hallucinations, etc. He then diagnosed her with Psychotic Depression. When she got out of there, we never heard from him again. He didn't know what to do with her. So now we have her at an ALF and she is depending on people to cook for her. She still has the ability to toilet, bathe, eat, etc. on her own. In april she was taken off ALL meds for a month to see what her body would do. The shaking continued and her speach got very quiet. She does play with my children, but very limited. She likes to play the same games that she knows. She walks about 5 feet behind me and walks very slowly. She kind of walks like a duck.

After seeing a neurologist for a month, she ordered a PET scan to determine if the dementia is Lewy Body Dementia or Alzheimers. The PET scan indicated early onset Alzheimers. I guess the PET scan uses metabolism of sugar and the levels based on her PET scan showed Alzheimers.

I am not convinced because she doesn't seem to have a memory problem. She has some cognitive problems, like she forgets to lock the door, she walks in front of people and isn't conversational at all. She is like a zombie.

If you could have seen her last year...she was a 65 year old vivacious woman who drove a sporty car, worked for herself. Completely independent and lived for her grandbabies!!! She absolutely LOVED life! Now, a year later, her anxiety isn't any better and she shakes all day. Complete misery. If this is Alzheimers, why aren't any of the Benzodiazepines working. By the way, she is also on Exelon to help with memory (an Alzheimers drug). Why isn't anything helping her????

I am not willing to stand by and watch her in misery every day because nobody wanted to test her for B12. It may not be the problem, but how can I not have her tested???

Sorry about such a long post, but maybe someone will read this and have an idea that I may not know about. Thanks for reading!

emmaspaws:confused:
Linda,

Would you please review this and make any corrections/additions? Also, do your mother's symptoms change at all if she eats sugary things (sweets or fruit), caffeine? alcohol?

When did she begin having the urinary tract infections? Was it the two years before the stomach problems? If not, when?


Prior to 9-07 healthy woman
9-07 presented with severe stomach pains
diagnosed with h pylori and GERD
3-08 treatment: nexium, cipro, omeprazole
4-08 phenazopyridine for urinary tract infections
5-08 prednisone
9-08 anxiety begins
10-08 anxiety attacks
10-08 tetracycline for h pylori, lexapro for
anxiety/depression, xanax, metoclopramide hcl for
stomach
stomach and anxiety problems remain unresolved
xanax dosage doubled to 3 mg/day
lethargy and loss of speech,
xanax stopped abruptly
anger, paranoia, violent, suicidal, claustrophobic
10-08 Hospitalized and in psych unit
12-08prescribed Haldol, Geodon, Prolixin and Prilosec,
Nexium, Pepto Bismol, Mylanta
Geodon and Haldol disco’d
prescribed Risperdal, Ambien for sleep, Klonipin for
anxiety
hospitalization in Oct 08
diagnosed with depression
prescribed klonopin
loss of cognitive function begins
paxil prescribed for anxiety
experienced auditory hallucinations, (voices)
admitted to hospital and prescribed Seroquel
diagnosed with psychotic depression
shaking and nervousness began after psych
unit discharge

admitted to an ALF
PET scan suggests alzheimers

4-08 taken off ALL meds for a month
shaking continued, speech quieted, walks slowly, waddled gait

4 or 5 of 08 Increased desire for sweets and coffee (caffeine)??

Linda, I have not kept up with the alzheimer's research...have you checked with the "experts" on the alzheimers' board for their opinions and interpretations regarding the tests?? Again, I don't think your mother has AD (for one thing AD develops slowly and your mother's symptoms occurred rapidly)...but the people on the AD board may have info that would help.

Bethsheba
Linda,

The falls I would be willing to bet are due to atenolol...I experienced 4 serious falls in 4 weeks (I was only on that nasty drug 4 weeks!)only to end up in the ER on Christmas Day because I fell on my face hurting my eye...atenolol also causes severe anxiety and often panic attacks, and it causes sleep problems in some people!! Your mother's doctors prescribed the xanax and ambien instead of changing her blood pressure medication...although the side effectss of atenolol are serious and can be life threatening (as I found out personally), the atenolol is not the original problem! Do not take her off atenolol cold turkey as it can result in stroke or heart attack if you do!! That is something to be addressed a little later.

I have so much to share with you...some from personal experience and some from my past two years of research.

But I really would like to know more about those uti's...when did they occur? Before the stomach problems? During? After?

A family member of mine had parkinsons disease...I don't think it is parkinson's either.

As far as the AD, we have an alzheimer's board here!!! Just go to the top of the page under "Anemia Message Board" and look for "Health Issues", click on that and look for Alzheimer's Disease...there are some very, very knowledgeable people on that board...Martha comes to mind...again, I don't believe your mother has AD, and as far as I know there are no tests to confirm AD other than doing an autopsy...but my info may not current...the people on that board should have more info. What I would suggest is finding out more about that PET test as I would question the results. No, tests aren't always accurate and if accurate they can be misinterpreted.

I personally think your mother's condition is reversible. More later.

Bethsheba

[I]PS This is important...how long has she been on the atenolol??[/I]
[QUOTE=bethsheba;3763219]Linda,

Would you please review this and make any corrections/additions? Also, do your mother's symptoms change at all if she eats sugary things (sweets or fruit), caffeine? alcohol?

When did she begin having the urinary tract infections? Was it the two years before the stomach problems? If not, when?


Prior to 9-07 healthy woman
9-07 presented with severe stomach pains
diagnosed with h pylori and GERD
3-08 treatment: nexium, cipro, omeprazole
4-08 phenazopyridine for urinary tract infections
5-08 prednisone
10-08 anxiety attacks
10-08 tetracycline for h pylori, lexapro for
anxiety/depression, xanax, metoclopramide hcl for
stomach
stomach and anxiety problems remain unresolved
xanax dosage doubled to 3 mg/day
lethargy and loss of speech,
xanax stopped abruptly
anger, paranoia, violent, suicidal, claustrophobic
12-08prescribed Haldol, Geodon, Prolixin and Prilosec,
Nexium, Pepto Bismol, Mylanta
Geodon and Haldol disco’d
prescribed Risperdal, Ambien for sleep, Klonipin for
anxiety
shaking and nervousness continued[COLOR="Red"](when did this begin??)[/COLOR]
diagnosed with depression
prescribed klonopin
loss of cognitive function begins
paxil prescribed for anxiety
experienced auditory hallucinations, (voices)
admitted to hospital and prescribed Seroquel
diagnosed with psychotic depression
admitted to an ALF
PET scan suggests alzheimers

4-08 taken off ALL meds for a month
shaking continued, speech quieted, walks slowly,
waddled gait

Linda, I have not kept up with the alzheimer's research...have you checked with the "experts" on the alzheimers' board for their opinions and interpretations regarding the tests?? Again, I don't think your mother has AD (for one thing AD develops slowly and your mother's symptoms occurred rapidly)...but the people on the AD board may have info that would help.

Bethsheba[/QUOTE]
I just went back and looked at your questions and forgot to answer your first one...you asked about eating sweets or caffeine and if her symptoms changed. I don't know if her symptoms change, but she craves coffee and sweets all of the time...never passes it up. She used to be that she would have her coffee with meals but not usually in between meals and she never hardly ate sweets. Now, when we go to the store, she wants to get coffee cake to eat with her coffee. She has gained a little weight because of this...this has just been since April or May.





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