It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board


Anemia Board Index
Board Index > Anemia | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


Thanks very much. I was on 1 B12 injection a week in the month of June and July. Now I am back on them again also getting 1 each week and am getting my 4th 1 next week, but still don't feel the difference. Suppose I will have to think positive. I have 2 get bloods taken then a few weeks after to see how my B12 Level is doing, but I find if my B12 level goes up even a slight bit they take me off them again and i just seem to go away down again. My level was extremely low so maybe that it why it is taking so long to feel the effect. Thanks.
When I went to the doctor, I honestly thought I had a very bad case of Mono. I had all the symptoms and I have already had it twice within the last 10 years.

I was very tired, had a headache, achy body, and my head felt like it was in a constant fog. I had the overall blah feeling. I was actually diagnosed with a UTI and a sinus infection to start with, but after meds, I was no better. That's when the testing began.

I was very surprised at being B-12 deficient. It runs in my family. The doctor did say it is hereditary.
Hello everyone....I have a had aB12 deficiency since 1999.My symptoms were extreme fatigue,pins 'n needles feeling in my fingers and toes,difficulty eatting/swallowing sometimes,confusion,very weak in arm/hands/legs/feet,sore/red/glossy tongue,unsteady walk,dizziness...I think that's about all of them.I have a complicated,hidden B12 deficiency.My levels get borderline-low and the hematologist found that my methylmalonic acid level was sky-high which points to a hidden B12 deficiency.So I had shots for almost 2 years and then I was told to get them 3 to 4 times a year,but I didn't,because our insurance plan wasn't good.Then 5 years later I was depleted again...so now I'm getting the shots monthly,but I have some irreversible nerve damage now because of being deficient for so long.

I still feel tired most of the time though.So I don't understand why I don't feel energy from it....

I have been getting monthly shots again since February 2007 and I just started to get my level up to a fairly decent number.

Have a good week everyone.

Scout~
I hope no one minds if I listen in. Not many doctors would be willing to hear about symptoms with a B12 in range but I have read that in Japan, they like the number to be over 500. My B12 was at 324 and my doctor said there is NO WAY a number that high would cause any symptoms and I am JUST depressed. They started me on Sertraline (Zoloft) and increased the dose twice when I said it was not helping and then switched to Effexor XR and increased the dose twice as again I said it was not working. It made me a different person alright but not the one my husband married!! I started being very paranoid and withdrawing and complained even more about sore hips (biggest symptom), fatigue, etc. My ionized calcium is HIGH 1.42 (1.17-1.32) but the doctor also says that is not high enough to worry about. Vitamin D is 19 (40-100) and Ferritin is 28. Total Cholesterol is 252. [U]Why do the labs even bother with ranges?[/U] Heck , I have been to 3 different doctors and they are all telling me I am just depressed. How blatantly obvious does a problem have to become before it is addressed? How much does a person fight before they just give up? Thanks so much for listening to me rant!! :mad: Hoppy
Scout, Hashimoto's thyroiditis is an auto immune thyroid disorder which causes hypothyroidism. I take Synthroid and Cytomel daily for this. To diagnose it, the doctor does a test for TPO and TG antibodies. Both of mine were positive. The body just destroys the thyroid slowly so thyroid levels have to be taken and adjusted frequently. I am new to this. I have been on meds for it for about 10 months now. I won't even bother with the symptoms as it would be very easy for you to check it out if you are at all interested. This GP I go to now is the one who listened to me with regard to the thyroid. I do not want to leave her. I would rather stay with one doctor and try to work things out. Thanks for asking. Hoppy;)
Hi all
Ohhh B12 deficiency what a trip!
I started not being well 5 years ago & it has taken that long to be diagnosed as the drs (all 9 of them ) kept telling me my levels were normal...I was getting symptoms at 372.....It had to get to 130 and serious symptoms before my new dr had his suspicions and tested me.......The uMMA (more sensitive than the serum MMA) & homocystiene tests are very important as they will pick up a deficiency if your levels are normal the levels really need to be upgraded normal is different for all and anything under 550 can present symptoms you should also get tested for Red Cell Folate....
I have come te experience that the type of B12 is crucial indeed...Here in Aus we normally treat defiencies this way Hydroxocobalamin injection everyday for 7days then breaking down to just 1 every 3 months that will work on correcting blood problems like PA but you will not get to much other healing.....Hydroxo needs to be converted as does Cyanocobalamin (one I would aviod all together) to Methylcobalamin and Adynosedylcobalamin (i havent spelt that write) I was having Hydroxo injections with not much help my new Dr treats it differently and rather aggresively I now have Methylcobalamin injections of 10,000mcg 3 x a week for 3 months then we will go down to 2 ect I also take sublinguals 5000mcg everyday and multi vitamin and folic acid...Folic acid is a crucial cofactor for B12........I was really ill with numbness and pins and needles memory loss, extreme anxiety ,elctrical like pains in my body, vision problems, foggy head,fatigue,positive for rombergs (fell over all the time when I closed my eyes) couldnt walk well in the dark, couldnt talk properly (by now my husband was getting really really concerned)........I was told that most of my symptoms because of there duartion would stay with me,,,,,,,but that is wrong I have no more numbness or back pains ect.....My stomcah issue were the first to heal I can think clearly have great energy ect I have had 17 injections and big doses as you can see but I am healing & I know i have the Methyl & my doc to thank for it....Methyl is the active form of B12 so it does not need to be converted and is taken up more into the cells....

Some peolpe I know also needed ADB12 which greatly improved their energy levels......My doc said I was low in folate so I neede supplements but it is crucial when having B12 injections as they work together and large doses of B12 can pull down the folate this works a treat for me I take one with my injections....

I feel that docs pay to much attention to lab levels if you have been having injections and the levels go up which they will most of it is just circulating and not used anyway and the say oh lets just give them to you every month this is not going to heal damage done it is just not enough the healing takes a while and you need to saturate the system with it...If one is still having the symptoms you must address it more than 1 per month even if the docs say no you can treat yourself with the sublinguals using methylcobalamin.......

I am living proof that healing can take place and I know of plenty more some who ended up in wheelchairs because of the deficiency

Happy to help with any questions

Good luck all
hi,i read if you are low on b12 you have no moons on your fingernails and ridges, i have no moons, only on my thumbs and they are very faint,is this true.shirley:)
I find that doctors are very reluctant to order any sort of urine or blood test for fear of repercussions from the insurance companies!! Every time I mention a test, for example B12, my doctor said my level was great at 324 and because it was normal, the insurance company would not let her order another one so soon! I am also having the same issue with calcium and PTH. My calcium is constantly above 10 with the cut off at either 10.2 or 10.5. I have had quite a few at 10.5 and as mentioned earlier my ionized calcium has always been high. The doctor just says not high enough to worry about. I asked if I could have the test every Monday for 3 weeks (that was suggested by Dr,. Norman at parathyroid.com). At first she said she would agree but when the first test came back at 10.5 (8.5-10.5) she said no more. When I began arguing that the ionized calcium was high, I was told IT IS NOT RELIABLE!!! A person should not have to go doctor shopping to be able to have blood testing done! Hoppy:mad:
Hi Ashley

scout has given you some great advice there with re your tests..
I would love to know your levels......
I presented with symptoms at 372 5 years ago I got down to 130 before I was treated my symptoms were like scouts plus a few more to boot.....

I agree with scout that injections would be better for you Methylcobalamin being the prefered type of B12.....
Sublinguals are also good for some people i know of a good brand if you are interested........The thing with the tablets is that they do not work on some people thats why those other tests that scout mentions are very important if you have intrinsic factor antibodies for example the tablets wont really do much the subs & injections are better.........

You could talk to your doc about these and scout & myself know a bit about B12 deficiency and are happy to help you with any questions & suggestions



take care now
Cheers
Rainbows End;)
Moomin,
It is very interesting reading your post, loss of taste--- I have been anemic, low ferritin, low D, low thyroid this past 8months.. numbers have gotten better on supplements but I never had my B12 checked and my cortisol levels and had that checked last week. The Dr. called me and said I should start a B12, folic acid supplement twice a day due to the slighlty low number (although I do not know what he is considering slight). I too have had the numbness, the worst thing has been the loss of taste and I have not been able to explain it to anyone--sometimes it is fine and other times I cannot taste what I am eating. I wonder if it is coming from the B12 deficiency. Does anyone know if this can cause this. With the low ferritin and anemia that causes so many physical symptoms I have gotten so confused on what is causing anything anymore.
Hi Shirley..
I agree with scout I also have normal blood levels although my MCV levels were edging up with every test....
This is were a lot of docs drop the B12 thing because they think if your FBC is normal there is no problem if the bloods are out that can dictate Pernaciuos Anemia also know as Megablastic anemia........

However this thinking is very out dated as you can have a severe deficiency without blood symptoms like elarged red cells, scout and myself prove that one..

Its hard when you have to convince someone otherwise isnt it........Is it possible for you to try another doctor...Where abouts in the Uk are you there is a Dr Chandy over there how I believe is fabulous here treats CFS & MS with B12............

If you can try to get those other tests mentioned before taking supplements as the supplements can skew the test results....

But with all those symptoms you need treatment for sure ...neurological damage usually occurs before blood changes at least that is what I have heard...There is a small window to repair damage I was told once you have gait problems its around 6 months or it is irrepairable.......But I know of people who have had excellent results after a year of gait problems......When I was really bad I couldnt stand with my eyes closed I would just fall right over that and my digestive issues were the last to occur before I got treatment...
Please keep us posted...........
Best wishes to you

Cheers
Rainbows End
Anyone experience anxiety and shaking with a B-12 deficiency? My mom has been given a diagnosis of alzheimers but her only symptom is anxiety, shaking and very mild cognitive problems (forgets to lock the door). I am waiting to hear from her doctor on getting a test for this, but I did get her a supplement of 1000 mcg per day. I pray this helps. It has consumed her life!!! And mine! Thanks!:(
Hi....Yes I had Extreme anxiety when my B12 was borderline low!!!!I get a monthly shot and it took about 7-8 shots to get rid of the anxiety.Also I read that a lot of studies are showing patiens with Alzheimers tend to be low in B12...great idea having your mom take a B12 tablet...you can get the sub-lingul(spelling) at health food stores..you just put a drop under the tongue...it's very good(better than the tablets!).

I also was very shakey and confused when I was so low in B12.....mine is the B12 deficiency that was "hidden"....that's why your dr. needs to do he other tests that go along with the B12 level test...methylmalonic acid test,homocysteine test,folic acid test.

That is so nice that you're looking out for your mom......hope everything gets better for your her.

Keep us posted....everyone here on the boards are very helpful and kind.

Take Care Scout~
[QUOTE=Bluze;3759443]Hi: I'm a 58 y.o. male with many neurological symptoms, blood test showed 234, doc gave me weekly 1,000 mcg injections for 4 weeks ending Oct. 3, and am taking 5000 Methyl subs now. Many symptoms improved, vision and mental fog within a couple days of first shot, however the fog returns now and then (but not as bad as before) and foot numbness is still there but has not gotten any worse.

Here's what I am confused about: I have read elsewhere that once therapy has started the blood test is worthless because it will show normal or high.

But on this board I read about people who get a series of shots, then their doctor tests them again and the number goes from 225 to 300 for example, and supposedly these on-going serum tests are used to monitor how well you are absorbing the B12. Yet other people claim this test is useless in these circumstances, aside from the fact that serum level and tissue level can be quite different.

What is the truth?[/QUOTE]

hi Bluze
Good to hear you are feeling better with the injections and great to hear you are taking methylcobalamin subs are you still having injections too?
methyl is the best for neuro damage I have this in injections in huge doses and my numbness is gone noe I have a little tingling thats great cause I am healing...
You ask a fair enough question and i will do my best to explainn it as i know it
The docs usually will take another serum reading after the patient has been offthe B12 for say amonth b12 doesnt stay very long in the system so they usually will give a few injections hoping that it will biuld up & then test agian..if it is still low they may give injections more regularly or if its higher they may pull back a bit.......
You are right the blood readings are always not reflective of what in the cells that is why the uMMA & Hcy tests are more conclusive........

I personally think you are better off going by how you feel when you are having thereapy for example the injections or subs or pills may reflective a higher serum level but you can still be having neuro signs to help with alot of these symptoms you really need to saturate the system and the levels should be around 2000 and maintained there for healing to take place this has been my experience and the same for many others I know it is also important to have B12s cofactors as well..............

I have 3 injections a week at 10,000mcg and my levels would be through the roof luckily my doc doesnt work like that is going by my lessening of symptoms it has worked really well I had severe symptoms for 5 years.........

Oh I have rambled on again I do this when it comes toB12 it is my passion to make an awareness about it
I hope i have helped answer your question

Good luck with your healing:)
Hi Scout
I found ya
Lovely to hear things are really improving for you
I will check my platlets and let you know I know my ferritin was low...

I had shin pain to it would kill every time I walked...and severe back pain in the middle of my back around my spine that was horribel I remember thinking that I had pancreatic cancer at the time...The anxiety you get with the deficiency just compounds everything your thoughts just run in the worst case directions I would freak if my kids hurt themselves or has a headache I would presume the worst thank goodness that has all gone......

I had another injection today I love the feeling I get from them it is really hard to explain it is like a feeling of real wellbeing very calm and centered I havent felt like that for years if at all.....

Keep up the great work with your posting and your true compassion for other is just lovely what an inspiration you are.......

Well chat soon
have a great day I hope its not to cold;)

Rainbows End
[QUOTE=Rainbows End;3761927]Hi
I am so sorry about your mum.....When you have her tested foe B12 I recommend you ask for the following..

B12 serum
Homocysteine
MMA (these will be elevated in a deficeincy even if the levels are so called normal)
Folate

Most doctors just dont think about it if you dont have anemia which is soooo wrong.......

I believe but dont quote me on this if they have not ever checked your mums B12 levels and she has damage because of it is malpractice But docs may have done it & just never said anything as it may have been in the normal range which is grossly wrong anything under 500 can cause neuro damage...

But for now it is great you are getting this tested but please make sure to ask for all 4........I hope you get the answer because at least it can be treated.....

I wish you luck and all the best for your mum

Good Luck[/QUOTE]
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=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:
[QUOTE=Ashleymichele23;3761975]I am SO surprised at how these doctors do not check for the B12 deficiency when people keep coming back with the same symptoms. When I had my B12 checked a few weeks ago and the only reason I had it done was because of these boards and hearing the symptoms and I pretty much have most of them they talk about w/B12 deficiency, along with anemia, my doctor called me and said I was deficient and take B12 w/Folic acid, but that is all he said, I have no idea what my numbers were and he made light of it. This could be the reason why I am exhausted, why I feel brain fog and why I have weakness when I walk sometimes, it sounds like these are all symptoms of this. Why do the Drs. miss this?[/QUOTE]

Hi Ashleymichele23
Most certainly is thecause of your problems
It is great you heeded the advice and you obviously felt truth in it and had the tests good for you...
I dont know why docs dont pick it up perhaps they like to look for the major things first even though we know deficiency is very major.. I had many tests for it but at first it was always in the normal range even though it was low then it went way down past normal by this stageI was pretty well ill......I think if I wasnt diagnosed )and it really was very strange how I come to get that last test but thats another story I know persistance helped) I would have no memory either be dead or in a nursing home and i really mean that I was that bad & I am only 43.....
Can you get hold of your levels?
I also think he is being to blaze about this you need to have other tests to find out why you are deficient there can be some big issues underlying there that need to recognized gluten being one of them..
Also are you taking oral pills or injections and how much and what type of B12 these are all relevant......

Cheers
Rainbows End
Dear emmaspaws

Thanks for recent posting it has helped a bunch I was thinking h-pylori and you confirmed this this will cause a deficiency not to mention all the drugs that are taken for it Prilosec, Nexium, Pepto Bismol, Mylanta!!! oh my goodness.... Destroying even more stomach acid when there was hardly any to start with.....
Then all the other meds will just mask the deficiency and wont do any thing as the deficiency is continuing to eat away at the nervous systems brains and cardivascular systems.....

Under the circumstances as this started around the H-pylori and then all the meds compounding the deficiency & just a continuing down slide in a short time (she may have had the h-pylori for a very long time) I wil say she is probably B12 deficient for sure.......

Cheers
Rainbows End
Hi Bethsheba. I am curious to know what you have in mind, but I will be patient and wait for what you have to say. To answer your questions...the shaking and nervousness began after she left the mental hospital at the end of October. It has never gone away. When we started seeing her 3rd Psychiatrist, he said her shaking and slowed hunched walk was a condition from side efffects of medication called Akathisia and that it would go away in time. It never has. She does stop shaking for very short periods of time which is why her Neurologist didn't think it was Parkinson. Parkinsons shaking is involuntary and continues repeatedly without stopping. Also, she is currently on Xanax 3mg per day
Atenolol for her pulse rate (it was 152 last month, BP fine)
Exelon 4.5mg 2 per day
Ambien 10mg at bedtime

I think that's it.

I asked her this morning if she felt any tingling or numbness in her arms and legs and she feels no pain, but when she is laying in bed, her hands fall asleep or go numb.

I wish you could see her...she just sits and trembles all day (unless she has something to occupy her hands to make the shaking stop.

I didn't contact the alzheimers assoc. because I didn't know who to contact, but I have been going to a support group for caregivers of AD patients and they gave me a booklet that talks about symptoms and moms seem to be intermittent and all over the spectrum. Like her slowed speech and lack of emotion is like end stages, but she is still ambulatory and eats and toilets herself. I don't know...I just want a clear answer...if there is one.
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]
Hi Bethsheba & Linda

I hope you don't mind if I get in on this.What a horrible time for you & your mom Linda...my heart goes out to you.Bethsheba you are a wonderful person....I can't believe how much you're trying to help Linda's mom....You Are An Angel!

I'm still wondering what your mom's B12 level is.I researched B12 'til kingdom come and I agree with RainbowsEnd that all those stomach meds can and do deplete B12.Plus as we get older we don't absorb nutrients as well and have less stomach acid.There are a lot of studies going on how B12(the methylmalonic type Not cyanocabalomin!)is being used to treat patients who are just elderly and also who have other health issues including Alzheimers.They are finding it helps patients recover their memory and they are more clear thinking plus the B12 goes right to the CNS and can repair a lot of the neurological damage.

That is why your mom's drs. should be giving her B12 no matter what.It's non'toxic and is Beneficial.Even the liquid form(they sell it in health food stores...I think it's about $12.00)is really good.It comes with a dropper made in the cap.....you just put it under the tongue.Ask her dr. what her B12 level is......Demand to know what it is!

I know I'm very passionate about B12 as RainbowsEnd is also.There's too many drs. out there who are not up to date on this subject.Did you know that most people who are low in B12 are mis-diagnosed as having a "psychiatric" problem?

Well I don't want to push the B12 thing...it's just one of many things that may be going on with your mom.She should be getting B12 even if she isn't deficient,because older people need it to prevent it from getting low anyways....that's what the experts say!

I really care...it just breaks my heart that your mom's life was fine 'til the drs. started giving her all those drugs.

Don't give up hope Linda...I'm hoping and praying your mom will get better.

Thank you again Bethsheba for all your help and for caring about everyone.I will let you know what happens when I ask my GP for a lyme test...I'm sure he'll say no,but Cindy said he should've checked it anyways,because of all my symptoms......if he won't let me have a lyme test and also check my ferritin level......he's getting dumped ASAP...I'll look for a real dr.Isn't it terrible how we have to beg for tests?Not right at all.

I will keep checking in to see how things are going~Scout
[QUOTE=scout316;3763470]Hi Bethsheba & Linda

I hope you don't mind if I get in on this.What a horrible time for you & your mom Linda...my heart goes out to you.Bethsheba you are a wonderful person....I can't believe how much you're trying to help Linda's mom....You Are An Angel!

I'm still wondering what your mom's B12 level is.I researched B12 'til kingdom come and I agree with RainbowsEnd that all those stomach meds can and do deplete B12.Plus as we get older we don't absorb nutrients as well and have less stomach acid.There are a lot of studies going on how B12(the methylmalonic type Not cyanocabalomin!)is being used to treat patients who are just elderly and also who have other health issues including Alzheimers.They are finding it helps patients recover their memory and they are more clear thinking plus the B12 goes right to the CNS and can repair a lot of the neurological damage.

That is why your mom's drs. should be giving her B12 no matter what.It's non'toxic and is Beneficial.Even the liquid form(they sell it in health food stores...I think it's about $12.00)is really good.It comes with a dropper made in the cap.....you just put it under the tongue.Ask her dr. what her B12 level is......Demand to know what it is!

I know I'm very passionate about B12 as RainbowsEnd is also.There's too many drs. out there who are not up to date on this subject.Did you know that most people who are low in B12 are mis-diagnosed as having a "psychiatric" problem?

Well I don't want to push the B12 thing...it's just one of many things that may be going on with your mom.She should be getting B12 even if she isn't deficient,because older people need it to prevent it from getting low anyways....that's what the experts say!

I really care...it just breaks my heart that your mom's life was fine 'til the drs. started giving her all those drugs.

Don't give up hope Linda...I'm hoping and praying your mom will get better.

Thank you again Bethsheba for all your help and for caring about everyone.I will let you know what happens when I ask my GP for a lyme test...I'm sure he'll say no,but Cindy said he should've checked it anyways,because of all my symptoms......if he won't let me have a lyme test and also check my ferritin level......he's getting dumped ASAP...I'll look for a real dr.Isn't it terrible how we have to beg for tests?Not right at all.

I will keep checking in to see how things are going~Scout[/QUOTE]
It's true she was given a LOT of meds and it has crossed my mind that maybe the drugs they gave her in the hospital did permanent damage to her brain! All the doctors tell me it's not possible, but I'm not convinced. The best way to describe mom is like a scared little child who smokes and drinks coffee. She asks permission to do everything...go to bed, take a shower, smoke a cigarette...really sad. This woman's life is completely opposite of what it was. I have convinced her GP to take the B-12 test. He said he ordered it back in March when she was admitted into the ALF, but the results were not in her file, it's nice to know that he followed up on that one! The ALF director is trying to get the results from the lab. I am reading the book "Could it be B-12" and I have found that the mental illness chapter has stories that are almost identicle to Mom's. It gives me hope, you know? Thanks for all you do!

Linda
Mom has been drinking coffee all of her adult life, I don't think we could stop her from drinking coffee. The ALF only lets her have it in the morning. I don't notice her more worked up after she drinks it. That's just it, we could be riding in the car or sitting outside playing with the kids...she just shakes nervously. The only time it gets worse is when she thinks about going back to the ALF. She hates it there, but I can't take her 24/7. I will lose my own mind!

The Atenolol was only for her pulse rate, she has never had high bp in fact all of her life she has probably been healthier than most young people. She didn't eat very well living by herself, she lived on cereal and cheese with bread for meals. She was always pinching pennies and had no desire to cook a meal each night for one person. Weekends were the exception.





All times are GMT -7. The time now is 04:46 AM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!