I'm new here. Hope I can articulate what I am looking for.
How is Alzheimers diagnosed? Is incontinence a symptom?
My SIL has a dementia but the doctors have not been able to find the cause. Seems like one (ie the doctors) would want to find the cause in order to treat the dementia. She has had 2 MRIs and blood work; also LP for spinal fluid. At first they said stroke, but now they say not.
She is 65. She has had dementia (slowly getting worse) for 3-4 yrs. No diagnosis except dementia. Is it normal to not be able to give a definitive diagnosis? Guess I am not sure what I am asking. Just frustrated. Thanks for listening.
Welcome! I'm sorry that your SIL has this awful disease. It is so frustrating to watch in those we love.
I think it's pretty common to NOT be able to diagnosis what caused the dementia. Many things can cause it; stroke, alzheimers, etc.
My Mom's began many years ago, slowly. When we finally got a diagnosis last year, they weren't for certain what had caused it. I believe they have fairly standard treatments for every one, regardless of the cause. Unless, of course, it's misdiagnosed and not dementia at all but another illness.
Incontinence is a symptom, later into the disease. On the opening page to the Alzheimers board, there is a sticky that lists the symptoms. The Seven Stages. You might be interested to read it, also.
I'm sure some of the other ladies will be along shortly, and may have more answers for you.
Another welcome to you! Sorry you need to ask these questions - we do understand.
My mother was in her early 80s when 1st diagnosed with dementia by her long-time doctor. He just announced that was what was wrong because of the odd things she'd done that I could tell him about - forgot math and how to write a check, house became very cluttered, had several car accidents, couldn't tell what mail was important and what was junk, etc. As her memory problems worsened and were more apparent (I lived far from her), I found the 7 Stages of Alzheimer's during my on-line search. I was dismayed to find how many of her odd behaviors were listed as part of the early to mid stages of Alzheimers. I travelled back to see her and I took her back to the doctor with my printed 7 Stages list on which I'd highlighted all of the things Mom was doing or saying. The doctor looked at that and said, "I suppose she does probably have Alzheimer's and not just dementia." No tests, nothing. He just went by the evidence that I presented. Probably almost 2 years went by before Mom became incontinent and she'd long forgotten I was her daughter by then.
At best, an Alzheimer's diagnosis is what you're left with after lots of tests show no other cause for the memory loss and decline in abilities. Sometimes in the late stages of Alzheimer's an MRI can pick up some oddities in the brain.
If your SIL is suddenly incontinent, she may have a urinary tract infection, so suggest to her doctor or her family that be checked.
Thank you, Sandy. I read the seven stages and it helped me a GREAT deal. It made me think that perhaps my brother is in denial about his wife's "problem". I am confused, probably because my brother is confused. I live away, in a different state.
After reading the seven stages, I began to think: my SIL's behavior started changing YEARS ago. First, she lost her job. A yr or two later, my brother reported rather matter of fact that she could not remember gadgets on their new car. It was then I asked him to get her tested by doctors. He did in time. In past yr, she has had all the tests. Now, she is incontient, quiet (VERY unusual for her), not oriented to time. I think she is quiet in order to hide how little she remembers. She does not wander, she is socially appropriate, she cannot do any household chores - totally dependent on her husband.
My brother says AD and other causes of dementia (stroke, vascular, etc) have been ruled out. I am beginning to think that her dementia is AD, and that we are all dealing with denial.
I think from reading your reply that it does not matter what kind of dementia she has - she has dementia. I guess our goal should be caring for her and coping ourselves. It is hard to face until one experiences it. You just keep hoping that the cause can be found and that the dementia reversed. It is very sad. Thanks again. I am so thankful I came here and read those seven stages.
That's an excellent idea, Barbara, about UTI. I should have thought of that.
My SIL is only 65 and best I can tell the deterioration started at age 60.
The MRIs and other tests do show Brain shrinkage and moderate enlarged ventricles. AD does not have these problems, right? Or could you have the ENLARGED VENTRICLES with AD. I think I remember that brain does shrink with AD. Also a test showed that she is getting good blood flow to brain. One minute I think AD, and one minute I think it is not.
I think what I am concerned about is that it is NOT AD and that it could be something that we can control - like B12 deficiency, etc. (We hope)
If anyone knows why the brain shows shrinkage AND why there is moderate enlarged ventricles, please let me know. We are getting to the end of diagnosing I believe.
Thanks to everyone....GotHope
If your SIL's ventricles are enlarged, she could have that low pressure hydrocephalus that's spoken of in a TV commercial. In that commercial, an older man is shuffling, confused, and stooped. After the diagnosis and treatment for low pressure hydrocephalus, he's energetic and active again. Perhaps that's worth mentioning to your brother.
I do think brain shrinkage is part of AD, but I'm no doctor. Hope the problem your SIL has is one that has a pill remedy!
I also hope that your SIL has something cureable or manageable by medicines! My dad has alzheimers and parkinsons and my mom has uncontrolled diabetes and dementia. My mom does not have it too badly, she just has her bad moments or days!
When we first started checking on my dad, he went to his family dr., who then referred him to a neurologist. That dr. did 2 or 3 big tests, outpatient hospital. One had circles on his head, hooked up to a machine. All of his tests, showed nothing wrong. But, then the neurologist gave my dad the MMSE, which is a test with asking questions, memory and writing. He failed that one. He gives him a partial MMSE about every year, and he has gotten worse in the last 2 years, since he was diagnosed. We think that my dad had it years before he was diagnosed.
He only had urinary problems, because of prostate cancer many years ago and now just enlarged prostate (he is 78 now). He wears pads, most of the time, now.
I do hope that you check out all of the different illnessess, before yall settle on AD. It might actually be something else, that is wrong with you SIL.
Thanks for all input. It helps to clarify my feelings and thoughts.
We have thought about that disease on TV (?NPH?). But there are three symptoms: incontinence, wide gait, and ???. She does not have wide gait (slow but now wide), and the tests done showed blood getting to brain; therefore, that disease was ruled out. FRUSTRATING. At least that disease was treatable and sometimes reversible.
Another thing: she has had two docs - one GP and the neurologist. After the second MRI, the neurologist said at last appt that "the area of interest has changed". In other words, they are now looking at a different part of the brain. These appts take forever - this has been going on for months now.
We have started doing our own research on the Net. I can't imagine what people did before the Internet. There is so much info, not to mention the support available.
Even tho the MRI shows atropy, we are continuing our research; BUT, I am preparing myself for AD.
Ooops! You're right - it's Normal pressure hydrocephalus, not low pressure like I wrote. Check that out on-line as NPH has nothing to do with blood flow to the brain. There is a fluid that bathes the brain and spinal cord and in hydrocephalus, that's the flow that is interrupted. The increase of this fluid in the head enlarges the ventricles and puts pressure on the brain, causing symptoms. The NPH is kind of a new wrinkle, so make sure the neurologist has actually tested for it.
As with all diseases, every patient does not have all of the symptoms. Having some of the symptoms warrents investigation.
LOL, Barbara. I didn't catch that. To me, Normal Pressure means everything is normal. It still doesn't make sense...but then a lot of things in life don't make sense to me. I go in faith - probably a failing.
Anyway, from what I understand, NPH has been ruled out. The good blood flow must have tested for something other than NPH. I just read the email my brother sent me. SIL had an "angiogram which involves the taking of X-ray pictures of the circulation of the blood in her brain". Not sure what they were testing for if not NPH. Brother never said. So much remains mystery...and being far away doesn't help my understanding.
Some memory problems can arise from poor blood flow to the brain. That's what an angiogram checks for. It looks at the blood vessels that bring blood to the brain (those in the neck) and how the blood circulates in the head.
I've remembered that the fluid around the brain, in the ventricles of the brain, and bathing the spinal cord is called cerebrospinal fluid, of CSF. This circulation is not connected in any way to blood circulation and blood flow to the brain. When everything is working right, the CSF just circulates in its area and all is well. If its circulation is blocked, symptoms start (like headaches, vision trouble, balance, or nausea) and on xray, you can see the ventricles are larger than they should be. In kids or adults who've had a head injury, the pressure inside the head increases as more and more CSF is trapped there. The symptoms intensify and it's apparent that something is wrong. Tests reveal the increase in the pressure in the head and doctors take steps to relieve the pressure so the symptoms stop and the blockage is open again.
In normal pressure hydrocephalus, the "normal" only means that the pressure inside the head isn't elevated (it's still in the normal range), yet symptoms are present anyway. All is not well.
I'm sure your brother is eager for any help, so please ask again about the NPH as it's better to leave no stone unturned in helping your SIL. He should specifically ask the doctors if this has been tested for, and if not request it or find out why not to test for it. Again, an on-line search may be helpful for your brother to do so he understands better.
I have a friend who is a nurse to a brain surgeon and she says it is amazing when they find this fluid around the brain. A shunt is inserted and the person's symtoms disappear almost overnight. Ah, if it could be that easy to cure other dementia.
Speaking of the brain, when our daughter was 13, she was very sick with flu like symptoms......sleeping a LOT, blowing her nose constantly, no appetite, fever, no energy. The usual stuff. I took her to a walk-in clinic and they gave us some meds for her stuffiness and sent us home. The next morning she woke up and went into the bathroom to take her usual morning shower before school. At the time I thought "good, she must be feeling better today". How wrong I was. Our son yelled at me and said he heard noises coming from her bathroom. I rushed in and found her sitting on the commode, unable to move. I had seen my Dad after his stroke and looking at her made me think she had had a stroke. My heart started pounding so hard I thought I would die. I tried to get her up and walking. She couldn't . She was paralyzed on one side. I managed to get her into her bedroom and layed her down. I guess I was in a state of shock. Finally, I grabbed her up and took her to the car and rushed her to the ER , which is not far. I pulled up and yelled at the nurse to hurry up, my daughter has had a stroke! The nurse calmed me down and said that a 13 y/o probably didn't have a stroke. They rushed her in and called her doctor. All I remember now is that he came right away and ordered a spinal tap. He said her blood count, the white count was too high. Infection. But what?? She could talk, but had a glazed look. He told us he was in touch with Children's Hospital, which is 3 hours away, and trying to schedule the Angel Flight to come and get her because we don't have a pediatric neurosurgeon here. That scared me to death. They finally whisked her away with me standing there watching, praying and crying. My husband and son were home packing by this time and we drove the long, long journey to Children's, not knowing what to expect when we got there. When we did, they had her in isolation and couldn't seem to get her fever down. We were all scared to death. The next day they did an MRI and discovered she had infection on her brain and they would have to operate or she would die. of course, with shaking hands, I signed the release form. They said she had meningitis but they weren't sure what kind yet. After the operation they were able to pinpoint that it was bacterial meningitis caused by strep B sinus infection. They couldn't say for sure if she would get over her paralysis. The next day she did begin to move her leg and arm and went right into therapy. We stayed there 11 days and then got to bring her home for more therapy. By then she could move all but her foot. She was a dancer, very strong and very determined. After a couple of weeks of therapy, also a pic line for the antibiotics, she could walk without her crutches. One month later I went to school and watched her dance with her drill team! That was 4 years ago. Her ordeal that almost took her life didn't affect her thinking or learning and she has had no after effects at all. She is still a straight A student and recently won a full Honors Scholarship to college! I thank God everyday that we got her help just in time and that my Faith in Him and all the people who prayed for us was all that got me through those horrible days. God bless you all for going through what you are. I know it's hard and some days worse than others. I will say a prayer for you all. C
How awful! There are miracles everyday that are just being in the right place at the right time and paying attention - and you certainly were for your daughter. It's wonderful that she had no aftereffects!!!!!!!!!!!!! Cheers!