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Could Vit D be the problem?
Michelle 50
Posted: Wednesday, December 28, 2011 12:11 PM
Joined: 12/28/2011
Posts: 43


I have just finished all the testing needed such as blood work, 10 hrs of  Neuro psyc

testing, MRI and EEG. Have been seen by my primary care MD along with Neurologists and Psycologists and Psychiatrist. At this point it looks like EOAD according to the person that did the nuro psyc tests. All other tests have been negative with the exception of my vit D it was only 13 which is very low.

I was started on a antidepressent and ativan for anxiety and will start the aricept this week. Does anyone have any info on the relation of low vit D and alzheimers? None of the Dr's seemed to pick this up at least it was not mentioned in relation to alzheimers by any of them. My MD did start me on VitD supplements. One thing I did not mention was that my mother and 6 of her siblings all died with alzheimers.

I'm feeling pretty depressed these days just wainting for the meds to kick in. I have not been able to go back to work secondary to the amount of stress it caused me before I was diagnosed. Being new to all this. I would appreciate all the help I can get!


nwlegaleagle
Posted: Wednesday, December 28, 2011 1:01 PM
Joined: 12/6/2011
Posts: 3326


Michelle D, so sorry for the diagnosis. You aren't alone and hope you will find this Board invaluable. I have traveled the path you are entering. My father and 9 of his siblings died with AD. When I first noticed symptoms (disorientation), I went through all the testing you did, but nothing was found. When symptoms persisted, I had my DNA tested and learned I had the Presinilin 1 gene, which has been found to cause EOAD. That was a year and a half ago. I was prescribed Aricept and Namenda, but couldn't tolerate Aricept, so am on the Exelon patch. Symptoms stopped for a year, but recently I started to experience fogginess and disorientation. Decided to try Anoxa, which is a medical food, and the fogginess went away. There is info about Anoxa on this Board.

I felt very alone and isolated until I found this Board a few weeks ago. There are incredibly wonderful people with lots of great information, understanding, and comfort. If you have not already done so, read through the posts for great information.

Love and hugs to you.


Iris L.
Posted: Wednesday, December 28, 2011 1:07 PM
Joined: 12/15/2011
Posts: 16143


Michelle, welcome to our online support group.  You have come to the right place.  The members here have information that can help you and will support you.

   

 

My story is somewhat like yours.  After testing my diagnosis was cognitive impairment nos plus depression.  NOS means not otherwise specified.  It means a dementia is caused by another disease but not Alzheimer's.  This is the type of diagnosis given to someone with lupus or multiple sclerosis or other type of disease. I have lupus, along with multiple other diseases and conditions which could impact my cognition.

 

 

My vitamin D level was low, but it was within the range of normal.  The doctors dismissed it.  I read up online and decided on my own to supplement my vitamin D intake.  I take 2,000 IU per day with fish oil, because vitamin D needs fat to be absorbed.  I also spend more time in the sun when I can because vitamin D is made naturally through sunlight.  Approximately 15 minutes in the summer is enough sunlight.  You need more time or access to a sunlamp at other times of the year.   

 

 

 

 

 

 Nutritional support is very important.  Make sure you are getting good levels of all your vitamins, especially the B vitamins along with folic acid and vit B12.  Folic acid is easy to find in most foods.  Vitamin B12 becomes hard to absorb in people over 50, and you may need B12 shots or sublingual tabs.  

 

 

 

 

 

 

 I have to go now.  I'll write more later.  Others will come along to respond to you. 

 

Iris L. 


Mimi S.
Posted: Wednesday, December 28, 2011 3:02 PM
Joined: 11/29/2011
Posts: 7035


Hi Michelle,

 

Yes, there is a definite association between the two. You might google Alzheimer's and Vitamin D.

 

I'm not at home, and so can't check. I think you would benefit from getting a copy of the Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ. It will give explanations for the process you went through.

 

And the following is from a person who was diagnosed five years ago and who is still ahead cognitively of where I was at the time of diagnosis. 

I believe in and follow the Best Practices.

 

1. Take meds as directed. If you are given aricept and have problems, try taking it in the morning. If diarrhea is a problem, get off cow's milk. I use soy milk and goat cheeses. I also take an acidophalus pill in the morning and yogurt in the evening.

2. Strenuous physical exercise. 

3. Strenuous mental exercise.

4. Mediterranean Diet; I also take antioxidants and Omega 3.

5. Keep up or increase socialization.

No smoking. Limit alcohol. Red wine, in moderation is great.

 

Keep in touch!


Iris L.
Posted: Wednesday, December 28, 2011 6:28 PM
Joined: 12/15/2011
Posts: 16143


Michelle 50 wrote:

 At this point it looks like EOAD according to the person that did the nuro psyc tests.

 

 

 

. One thing I did not mention was that my mother and 6 of her siblings all died with alzheimers.

 

 

 

 

. I have not been able to go back to work secondary to the amount of stress it caused me before I was diagnosed

 

 

 

Dear Michelle, Did your Mom and her 6 siblings who died of AD have Early Onset AD or did they have late onset AD?  There are some cases of familial AD.  JAB and others know more about that.   

 

 

 

Are you planning on applying for disability?  Does your company have a company long term disability plan?  The Alzheimer's Association has lobbied to have Early Onset AD "fast-tracked" as far as getting Social Security Disability Insurance benefits.  Your local Alzheimer's Association can help you with making plans for your financial future.   

  

  

Here is a link to some information for newly diagnosed patients: 

http://alz.org/living_with_alzheimers_early_onset.asp  

 

 

 

Iris L. 



Michelle 50
Posted: Thursday, December 29, 2011 7:48 AM
Joined: 12/28/2011
Posts: 43


I want to thank you all for your responses! This is so new to me I just don't know where to begin. One of the problems is that I can't work and I have been primary supporter of the household. I have applied for SSI and short term disability from work but in the meantime it's hard to get by and evev harder not to worry about. Somewhere deep down inside I have faith that some how things will work out, that feeling is often overcome with worry however. For today I am very grateful I have found you all because I feel very isolated at times and thats not good either. I look forward to connecting with you all....
JAB
Posted: Thursday, December 29, 2011 10:28 AM
Joined: 11/30/2011
Posts: 740


Hi, Michelle, welcome to the boards. 

  

There is a very strong link between vitamin D deficiency and cognitive dysfunction ... but exactly what that link means is still unclear, and whether taking vitamin D supplements will either prevent or resolve cognitive problems, at least in some people, has not yet been established.

http://www.ncbi.nlm.nih.gov/pubmed/21790207

Certainly, it would be a good thing to discuss taking vitamin D supplements with your doctors.
 

  

  

Iris asked whether your Mom and her 6 siblings all had early-onset dementia.  There is a very rare kind of Alzheimer's, called "early-onset familial Alzheimer's disease (eFAD)", that can be inherited.  If all the siblings developed Alzheimer's in their 40s or 50s, that would sound like it could be eFAD.  One of their parents would have also had eFAD. 

  

If your Mom and her siblings developed Alzheimer's later in life, then they would have had what's called "sporadic" Alzheimer's, which is what the vast majority of Alzheimer's patients have (including many who develop it when they are younger).  If that is the case in your family, your risk of developing sporadic Alzheimer's is higher than the average person's, but still not all that high. 


nwlegaleagle
Posted: Thursday, December 29, 2011 1:26 PM
Joined: 12/6/2011
Posts: 3326


 If that is the case in your family, your risk of developing sporadic Alzheimer's is higher than the average person's, but still not all that high. 


If the inherited gene is presinilin 1, the chances of inheriting the gene is 50/50 (depending on whether the child inherits the gene from the parent with the PR 1 gene).