We went to the neurologist yesterday...we have been seeing him for about 2 years. He says he believes DH has "dementia" but not Alzheimer's. He has been on the Exelon patch for 6 months, with no noticeable improvements. So now he prescribed Namenda. What I am frustrated about is that he said that he still thinks this is thyroid based and needs to be treated with steroids. Last year we went to three different endocrinologists who did not agree. They thought he had thyroid disease but that it was not causing the dementia. Meanwhile DH continues to decline. We have had our hopes raised and dashed to the ground so many times. I am getting his thyroid tested again and think I will get a referral to another neurologist for another opinion. DH is 62 yrs old (acts like 82). Thoughts??? Has anyone else encountered this.
Trust your gut. I can't believe they are prescribing things without a diagnosis. One doesn't 'have' dementia; it is the symptom of something. You can have old age dementia, but there is still a reason--old age. Since your LO doesn't qualify there, you need to move to MRIs and EEGs and PETs. Don't take no for an answer, and don't accept "no answer"!
Hi shoegirl, I agree 100% with trisinger... Keep fighting to get your husband a diagnoses and the help you all need. I switched doctors when Lynn started with his symptoms for this very reason. I was told it was normal for his age *sigh* Even when we got the AD diagnoses, I still went and got 2 more opinions. Best of luck, Nikki
Shoegirl, I agree with everyone else, try to get a diagnoses. I don't know if you have read any of my previous post, however, my husband has seen 4 different Neurologist, & none will confirm that he has Alzheimer's. He has over the last 8 years 5 MRI, PET Scan, EEG's,Lumbar Puncture, & numerous blood test. Since his problems began seizure like episodes they all lean toward this episodes causing his memory problems, which are extreme. He does take Lamictal (for the seizure activity) Namenda & Razadyne ER for memory. I have been speaking to the Neurologist to get another PET scan, it has been 4 years since the last one. I myself would like to have a diagnoses, however, that may not happen until later.
Shoegirl, There is a Mayo Clinic in Scottsdale. Do you have access to it? We were able to get an appointment with Richard Caselli there and HE was the one that nailed the diagnosis for use after almost 7 years of confusion, frustration and grief. I have previously posted the difficult process we went through. You need to have an MRI and they can be done easily with the latest equipment (not being put in the "tube").
Getting someone to listen to you can be such a struggle, but you have to keep fighting - and fighting is the word. Gather ALL the support you can and push.
I didn't mention that when we finally hit crisis mode, eighteen months ago, I simultaneously had a serious sinus infection, upper respiratory infection and shingles. He was in trouble and so was I. It was my wake-up call that something drastic had to change.
My thoughts and hopes are with you - and everyone enduring this struggle.
My husband was diagnosed in a strange way. If nothing else, you can try this method too. Ask to have your husband see a cognitive therapist. She will know if what she is looking at is some kind of simple stroke, which can be fixed with therapy. Or if it is dementia, which goes no where with therapy. And basically no one else really can tell which parts of cognition are gone as well.
There is also something else. You may already have a diagnosis. It is possible that there is no name for dementia from causes where there is no name for it. Your neurologist was doing his job when he wanted your husband's thyroid to be thoroughly checked. That is one of the dementias that actually can be reversed because brain damage is not involved. If three endocrinologists say that isn't what is going on, because they have the thryoid stabilized, then it is something else.
Yes, you should have MRI, CAT scan, etc., etc. done to see if there is visible brain damage. Alzheimer's can't be diagnosed until after death at this time, although they are working on finding a test for it. It is what is left after everything else has been ruled out. And that is most of the demented population of patients.
So not having a named diagnosis is not all that unusual, although if your husband hasn't had the normal battery of tests, and you don't have an EVENT, those tests do need to be done. In many cases the "test" that proves it is an unknown dementia is trying one of the memory drugs and it works. In this disease if it walks like a duck, and quacks like a duck, it is probably a duck. The fact that you don't know what kind of duck doesn't really change things.
Thanks everyone. He has had two MRI's, 1 CT scan, a PET scan and some other specialty MRI. The conclusion from the PET scan was "an Alzheimer's like dementia". Anyway, went for blood work today, will get results from primary care physician re: thyroid (he is on thyroid medication) and then will get a referral to another neurologist. Metamorphisis, I would like to go to the Mayo Clinic but am not in a position to afford it at this time. Starling, I agree with the duck thing but I need a diagnosis so I can get some additional funding.
Not all neurologists are the same. You need one who specializes in memory disorders. Check the link on the home page of the left side of the website - "find a memory disorder clinic in your area." If you have medical insurance from your job, it should pay for all of the tests.
As for the "dementia" diagnosis confusion - this is how it was explained to me - If you have a FEVER, it is not a DIAGNOSIS of anything. It is a SYMPTOM of an underlying condition - a virus, an infection, pneumonia, the flu, or something else.
Dementia is a SYMPTOM of an underlying condition. It could be a stroke; vascular related; Parkinson's; a brain tumor; vitamin deficiency; or ALZHEIMER'S DISEASE. According to our neurologist, 70% of all dementias are caused by Alzheimer's Disease. If the tests rule out strokes, tumors, and all the other conditions I mentioned, then they go with the Alzheimer diagnosis.
I found out my insurance does cover some of the costs for the Mayo Clinic. So my dr's office made the referral, they called me and did a phone interview and will contact us in 3 to 5 days. We will see a neurologist that specializes in memory disorders. Yay! Thank you for your words of wisdom. Meanwhile, the thyroid blood tests came back within normal range. (just as I suspected)