My husband started having short term memory "issues" a year ago and also had some trouble making decisions. He had a complete workup by a neurologist and neuropsychologist and they ruled out AD (by MRI) pretty early. They then spent a year giving him everything from anti-depresants to ADD drugs and nothing cleared up the fogginess. AFter a one-year follow up that I finally attended with him the Dr. sent us to another Dr. in his practice who specialized in this area of Cognitive Impairment, he called it.
The next Dr. looked at the declining cognitive tests from the one-year mark and sent us for a PET scan. She had mentioned in her office that we could be looking at FTD which completely freaked me out. The day after the PET scan she ordered on 8mg of Razadyn. The scan had come back with a report that the radiologist said was consistent with AD but she added that due to his age (53) and her want to keep people from labeling him she wasn't ready to diagnose yet. She was not ready to call it AD yet. Is this normal?
He started the drugs the next day and now we don't see her for another three weeks. Does anybody out there have experience with this type of test? How often does a PET scan come back with a bad report but it turns out to not be AD or FTD? Was she being non-commital just to give us time to scramble and get long-term disability insurance lined up? Or are there doctors out there that really will just treat him with AD drugs even if it's not AD? I know I probalby wont' get any great answers when we see her in a few weeks but this sitting around is driving me crazy. He reports he doesn't feel much difference after one-week on the drugs. How long does it take for these to ramp up. I think he seems less symptomatic but maybe I'm just deluding myself.

Any input anybody?

TYFT:

Welcome to the board. So sorry to hear about your husband. From what I've read on these boards it can take several years to get a diagnosis. My husband (52) was diagnosed this year with EOAD. In his case it is herditary his mother died from it and his 49 year old brother has it. In my husband's neurologist was a friend and I told him I wanted a diagnosis as soon as possible so he gave us one after 2 months without doing any tests. My husband afterward went to a neuropsycoligist who confirmed a major loss of short term memory.

I would advise you to get long term care & disibility insurance if possible. I would also advise you to contact the ALZ Society for any help you need.

Enjoy the time you have with him.

I am so sorry to hear about your husband, but you will get a lot of support here. Some of your questions do not have easy answers, and that includes getting a diagnosis. It is just not easy for doctors to do, and your doc may well be giving you a chance before he is 'labeled'. As already mentioned, if you think you can get long term care insurance for him at this point and before an AD diagnosis, that's a good idea, altho it may be impossible. Sometimes AD drugs are given to people w/out AD. They can take several weeks to kick in. AD testing is done by eliminating anything else that could be causing dementia, it's about 85% accurate, so you often get a diagnosis of 'probable' AD. If you have specific questions or just need to vent, don't hesitate to come here. Everyone will do their best. It's a difficult thing, no matter the cause, try not to borrow worries--I know easier said than done. We understand what you are going thru, you are not alone in this.

Hi and welcome! You will certainly find a supportive group here! They are all a wealth of information.
My husband is 51. We have four children (8, 12, 18 and 20). We have been dealing with memory loss issues for three years. It has gotten progressively worse. So far, no diagnosis. We cannot get the insurance company to pay for the PET scan.
We have no diagnosis, but the dr told us last week during an hour long appt that she is now ready to diagnose with EOAD by the end of the summer. I guess she finally see's we aren't getting anywhere? Or perhaps because I had this outburst in her office where I told her I need a plan for my family? Something is going on...more than she has told us...as we were leaving, she had the receptionist give me a booklet on adult day care.

quote:

So far, no diagnosis. We cannot get the insurance company to pay for the PET scan.

That's nasty of them. We paid for ours out of pocket. Not cheap, as you know.
But it was the info which the neurologist calls the "bottom line." The undermetabolizing brain areas on my husband's PET are striking, and lined up with his neuropsych testing and an AD pattern.

quote:

Originally posted by emmline:

quote:

So far, no diagnosis. We cannot get the insurance company to pay for the PET scan.

That's nasty of them. We paid for ours out of pocket. Not cheap, as you know.
But it was the info which the neurologist calls the "bottom line." The undermetabolizing brain areas on my husband's PET are striking, and lined up with his neuropsych testing and an AD pattern.

We did get the "official" diagnosis yesterday of EOAD. Apparently there was a change in his MRI - frontal lobe. THAT was why the dr wanted the PET scan....she wanted to look into what exactly was going on. However, with all the cognitive decline, she was ready to make the diagnosis.

quote:

Originally posted by Too young for this:
My husband started having short term memory "issues" a year ago and also had some trouble making decisions. He had a complete workup by a neurologist and neuropsychologist and they ruled out AD (by MRI) pretty early. They then spent a year giving him everything from anti-depresants to ADD drugs and nothing cleared up the fogginess. AFter a one-year follow up that I finally attended with him the Dr. sent us to another Dr. in his practice who specialized in this area of Cognitive Impairment, he called it.
The next Dr. looked at the declining cognitive tests from the one-year mark and sent us for a PET scan. She had mentioned in her office that we could be looking at FTD which completely freaked me out. The day after the PET scan she ordered on 8mg of Razadyn. The scan had come back with a report that the radiologist said was consistent with AD but she added that due to his age (53) and her want to keep people from labeling him she wasn't ready to diagnose yet. She was not ready to call it AD yet. Is this normal?
He started the drugs the next day and now we don't see her for another three weeks. Does anybody out there have experience with this type of test? How often does a PET scan come back with a bad report but it turns out to not be AD or FTD? Was she being non-commital just to give us time to scramble and get long-term disability insurance lined up? Or are there doctors out there that really will just treat him with AD drugs even if it's not AD? I know I probalby wont' get any great answers when we see her in a few weeks but this sitting around is driving me crazy. He reports he doesn't feel much difference after one-week on the drugs. How long does it take for these to ramp up. I think he seems less symptomatic but maybe I'm just deluding myself.

Any input anybody?

Too Young, I thought I was too young also, I was diagnosed in 2002 at 38 years old at the Mayo Clinic in Rochester. It took 2 years of Doctors and tests and repeats of tests to finally know what we were dealing with. So you may find yourself getting repeats as well over 6 month periods until they feel ready and comfortable in giving you a "probable" diagnosis as there is no definite answer with dementia until after death and then if you wish they can do an autopsy.

You stated that they put him on Razadyne also known as Reminyl. It will take about 4-6 weeks before he or you notice any diference and you may not notice any real difference but the fog may be just alittle better and if so then the medication is a plus. I suspect if the med works then the doctor may add another medciation called Namenda also known as Memantine, it works as a booster to the other dementia meds and has been a blessing to our family as well as thousands of others.

I am so sorry for what has brought you here but you will find lots of encouragement and support here. If you need someone to talk to or your husband would like to talk to someone and know that he is not alone, feel free to call me
417-345-1709, if I am not home I will get back with you. You can also e-mail me at tiger@todays-tech.com

My husband finally received a diagnosis today. He was placed on the new Exelon patch and the plan is to add Namenda in a month. I am really hoping and praying that this helps to bring him out of the fog - even a little clearing would be great.

We've been about a year trying to figure out what was wrong. My husband has a mood disorder that has complicated his diagnosis. I remember telling his doctor last year that the only way I knew how to describe his behavior was he was acting like an alzheimer's patient. I had no idea at that time that we would ever be looking at this disease seriously.

My husband is 45. We have 2 children - 12 and 9. It is really hard to accept. There is some relief in a diagnosis even though it is not what you wanted to hear. Just knowing what you are up against helps. Having doctors tell you that there is nothing wrong with your husband and they think it is just a psychological issue is really frustrating.

At least now I know that my husband has not just gone off the deep end. He's not insane. There is a reason for his strange behavior. This gives me the ability to stay in the fight.

I feel for what you are going through. It is so frustrating, scary, and emotionally draining. My husband had a PET scan last year as well. The radiologist report says that it is consistent with early alzheimers disease. But it has taken this long for a diagnosis to happen and for medications to be prescribed. I wish there was a better and more definitive test that could be done.

Hang in there....

Lelore

Dear Lefore: I would request a copy of the report on the PET Scan. Signs of early Alzheimers might be "white matter hyperintensities." Once you know what the report actually says, you might want to also post on the caregiver's portion of this forum because those who interact most often are there.

White matter hyperintensities can be caused by migraine headaches as one example. They may also be caused by chronic, prolonged exposure to low levels of EMF/EMR (electromagnetic fields/electromagnetic radiation).

Early physiological changes on a PET scan may be subtle chemical changes. Chemical changes also occur when persons are exposed to low level EMF/EMR.

If you haven't read my appeal to the Alzheimers' Advisory Board, you may want to check it out by clicking on: http://freepage.twoday.net/stories/3038870/

A primary concern expressed in my email appeal above is the critical need for persons to move electric items and some telephone equipment away from close proximity to beds. Walls on the otherside of head of one's bed s/b checked also.

My new website has now been released to the domain and is: http://guineapigsrus.org NOTE: If the site doesn't have a picture of a guinea pig and two little boys, would someone please let me know? My computer keeps coming up with the old, irrelevant "test site" w/only a sick looking guinea pig at the top. My webmaster released the site yesterday and says my computer needs to be "refreshed." I have tried F5 and otherwise can't fine the "refresh." I have pulled up the site by just typing guineapigsrus.org also....

Your doctor may have explained more than what you have posted about the results of the PET Scan but I would "proceed with caution..." unless it is fairly conclusive.

It is always possible that a physician might rely more strongly on the radiologist's report of mild changes when the patient is already reporting a variety of symptoms consistent with EOAD if the evidence leans strongly in that direction. In other words, the diagnosis may be more of "a judgment call" than based on the actual PET Scan results since the test was ordered in the first place because of the reported symptoms. We, of course, know that no test is conidered to be "conclusive" except examination of brain tissue.

However, another suggestion might be to request a blood test for the APOE4 gene. This is not the only possible gene involved but Bud' neurologist said "if you don't have the gene, you don't have Alzheimers and you won't get Alzheimers."

The neurologist does not, however, do electromagnetic radiation research. I can say from years of research that there is more than a suspicion (there are actual studies) linking Alzheimers to low level of EMF/EMR exposure.

New information (on my website) re the ASTM Gene -- "Letters section" indicates low levels of melatonin are found in autism and believed to be also linked to Alzheimers and other neurodegenerative disorders.

There are many studies regarding low levels of melatonin linked to chronic, prolonged, low level EMF/EMR exposures.

I assume other causes were ruled out by blood tests, etc.

There are numerous explanations why exposure to low levels of EMF/EMR induce adverse chemical reactions including subtle reactions and advrse interactions with medications -- even in the case of high doses of Vitamin C if an individual is sleeping close to electrical items and/or some telephone equipment.

One of my guinea pigs developed "Reactive Renal Amyloidosis" due to EMF/EMR exposure. You may know that "amyloid" is found in Alzheimers' patients' brains, albeit in a different form. Amyloid is linked to "toxic exposures."

Feel free to call or email. You may want to check out my website even if you don't think your husband has any of the problems my husband, Bud, experienced as cited in my email to Dr. Marilyn Albert.

I, of course, can not "medically advise" you or your husband but I can share knowledge acquired over 17 years of electromagnetic research and experience as the grandmother of two wonderful boys who might not be here but for "forging ahead," doing research, evaluating lab reports and clinic notes, and "following my heart" in spite of all.....

Best of luck to you and your husband....

I do have a copy of the radiologist's report from the PET scan last year. Here's what it says...

"The is a normal heterogeneous pattern of radiotracer localization to the brain.

There is diffusely and mildly decreased activity in both posterior pariertal lobes in a relatively symmetric fashion. There is no other focal abnormality definitely identified.

The summary said: There is mildly decreased metabolism in both posterior parietal lobes in a pattern which is consistent with early Alzheimer's disease.


Genetic testing was also done last year. Robert has the Apoliprotein E genotype: 3 and 4.

As far as elctronic devices..... Robert has never been much of a techie. He did use a cell phone - I say did because he can't find it now. But he was not a frequent user. We have an alarm clock on our headboard, but it is on my side of the bed (we have a king size bed). So, I'm not sure how electronic devices may have impacted his dementia.

There is so much that we don't know. It can scare you sometimes if you really sit and think about it.

Thanks for the information.

Lelore

Lefore: Sorry to learn that your husband does have the genetic link.

Still, this doesn't mean you can't improve quality of life for both of you.

I just made a post re my new website on the first group on this forum (forgot title -- getting very tired even tho early in evening) anyway it is titled "Guinea Pigs "R" Us Fighting.... website is: http://guineapigsrus.org

I highly recommend you move any electric clock away from the bed -- I would put it across the room and buy a battery-operated clock for the nightstand.

Currents are induced on metal mattress springs, metal headboards and metal frames. Without being able to access whether you may have a waterpipe that is carrying currents, a bad wire in the wall, or some other exposure such as an electric or phone item on the wall in room on other side, etc., it is difficult, like you say, to determine how much electrical pollution (EMF/EMR-related toxicity) applies to your husband's situation.

Many jobs involve chronic, prolonged exposures also. Certain persons are more vulnerable to effects of electricity just as in the case of any sensitivities or allergies.

I would alo be very suspicious of adverse effects of any medications. We are all being bombarded with electromagnetic radiation pollution from cell towers, radio towers, high voltage powerlines, cell phones, etc.

It is for that reason, plus the fact that we have lived for over 30 years only 50 ft. from two high voltage powerlines that I would consider any other possibilities re "close, chonric exposures, combined with any medications, etc. first. In other words, both my husband and I have greatly improved after making simple changes to lower "close EMF/EMR exposures at night" as well as taking melatonin before going to bed. As I mentioned before, we also take a lot of other supplements.

Not only herbs, minerals and vitamins can be "radioprotective," but so can foods. Everything has its own frequency.

A lot to think about. Be encouraged in the meantime that I interact with many persons who continue to report improvements after various lifestyle choices. The science does bear this out.

In other words, I think we all will start hearing more about benefits of supplements because there certainly is a lot of "bad press" re medications of all sorts lately.

Take care - Joanne P.S. I hope you and your husband are able to discover things that will help to slow down progression in any event.....