I am trying to getting some feedback if anyone has experience this My DH had several test done several weeks ago, the doctor and I have been playing phone tag I called him to get the results of the test and had several questions about the DH and it was like 2 weeks after the test was given. I thought maybe because I hadn't heard from the doc everything must be ok but the doctor has reached out to me 3 times while I was not home and would leave a message for me to hang in there and call him back to go over the results. Today again I called early this morning and still have not gotten a call back maybe because it is Sat. Could this mean that it must be serious or wouldn't he just say on my answering service that the results came back and everything is fine. I am not trying to jump to conclusions but I thought when something is fine the nurse or doctor asst would call and say the test are normal. Has anyone experience this
angelb - I have always had to get reports from the doctor. I know some may let the nurse do it, but not all. Evidently it is not critical or there would have been more urgent effort to contact you. Sounds like maybe something has gotten worse, but nothing to hurry about.
What is your hb's diagnosis? What was the testing for? just routine?
Relax cause you will have to wait until Monday. Stressing will accomplish nothing. When call Monday, make it a point to stay home. If the doctor has called around the same time then particularly be near the phone then. If you have a cell, give that number.
His diagnosis is FTD/EOAD he was give this double diagnosis because of the severe braing shrinkage all over......stage 5 showing some symptoms of 6. The test was ambulatory EEG had . and another MRI done this is the second since last year. When he was hospitalized in March out west the doctors there said the MRI showed significant frontal lobe shrinkage and that it was so severe he looked to be 80 not 59 also. My DH has severely declined in my opinion since last year it is almost hard to believe......I am thinking that when a doctor has a patient with FTD or AD they are not on there priority because it nothing they can really do for them.. My husband is on Aricept 10mg and I think he has gotten much worse since being on it. He also has glaucoma,pernicous anemia, hypothyroidism,myasthienia gravis,
i was told due to hippaa laws that any medical diagnosis couldnt be left on a message recorder due to someone else maybe getting the message in error. sounds feasible to me. drs dont usually work weekends. call monday am and ask to speak to his nurse directly, (they have extensions) and then leave HER the message saying you are returning 3 calls from the dr. its works for me this way. she will have him on phone or call you back. hope its nothing serious -divvi
Call the doctor on Monday and you can also ask when does the doctor do his return calls. My husband's neuro always makes his calls after hours between 7 and 8pm.
Do you know why a FTD patient shouldn't take Aricept? I guess they put hubby on Aricept because of also having Alz. What medication is usually prescribe for FTD? I wonder if there is anyone on the message board who also got a double diagnosis
There is generally no medicine for FTD, except behavior management meds. For depression and rage. However, we have a friend who has FTD and is on the Exelon patch.
I'm not sure whether you can have FTD AND AD. They are two separate diseases. However, in Sid's case, he has AD that is affecting the frontal lobe portion of his brain much more than other areas at the current time. Could that be what is happening with your husband?
I am known as the Question Queen at our neurologist's office, and I wear the name proudly. Never stop asking questions directly to the neurologist. What is the difference between FTD and AD? Can he have both? Does he have AD that is affecting the frontal lobe? If he has FTD, and there is no medicine for it, why give him Aricept? What tests did he have, and what are the results? What do the results mean? Ask. Ask. Ask. You have a right to have all the answers. I'm lucky that I have a good rapport with our neurologist, and when I say - "I have a question", he always laughs and says, "Of course you do. I wouldn't expect anything else." But he always answers every question clearly and honestly.
Angelb, I know you're worried, and with all the problems your husband has, I don't blame you a bit, but as much as possible try to put those worries away in a a distant compartment of your mind until Monday. It doesn't sound like there's much you can do until then, but it does sound like you've got your hands full at home. Please let us know what happens. Our specialty here is reaching out and supporting each other.
Angelb, My husband is 58 years old, he has FTD. Even though his memory has been declining for the last 6 years, only after his 2nd PET Scan last July was he diagnosed. He takes Namenda, Lexapro, Keppra & Lamictal. He was taking Razadyne ER, after he was diagnosed, the Neuro took him off it. We were going to stop the Namenda also, but after researching that is the only memory medication that sometimes helps FTD. I was afraid if we removed it, he would really decline. He has declined so much the last year, that I am thinking it is no longer working after 5 years of taking. The Neuro did tell me that Namenda is the only medication that if stopped and the patient declines worse, that it can be started back & the patient can return to the stage they were in before. I am still debating on what would be the best thing to do. Some days I feel if it is not helping, why take medication.
Angelb, my husband is 59 years old and has FTD. He is on aricept, namenda, cymbalta, seroquel and pravastatin. His neuro put him on aricept first and did say that a lot of FTD patients don't tolerate it (it can cause more aggression) but he had some that it did help. The aricept did seem to help in the beginning -- I'm not so sure now his short term memory is really bad. He has been on cymbalta for depression since before d/x. His psychiatrist recently added the namenda and seroquel to try and help his aggitation. I have read that namenda is being tested for FTD too. Right now I believe that only the cymbalta and seroquel or doing anything, but I'm afraid to stop the other meds to see.....
angelb, my husband is 59 and has been diagnosed with FTD. When the geripsychiatist diagnosed him last year as having FTD, he also said that 50% of patients diagnosed with FTD may really have AD; there's no conslusive way to tell while they are alive. DH was on Aricept, Namenda, Lexapro, Clonopin previously but was taken off both Aricept and Namenda when in the psych hospital for med adjustment to control aggression. In his case, initial doses of Namenda made him very aggressive but he settled out on it. I too was very concerned about the dr taking him off Aricept and Namenda because his cognition seemed to be very good on them. He's been off them for about 8 months and I really haven't seen much of a decline in his cognition, however, he has become less verbal. Ther are clinical trials currently being conducted using Namenda for FTD patients to see if it works. He's now on 225mg of seroquel a day, and 300 mgs of Neurontin which seems to have helped with his agitation, aggression.
KADEE: How did you get the second Pet Scan? Husband's current neurologist refused to order one when I requested - we had one two years ago to determine whether he had FTD and it showed nothing but his neurologist at the time still believed he might have FTD as opposed to AD. This neurologist (new state) said it was pointless now as he obviously has a dementia and since the treatments are not different (according to him) there was no real point in knowing. He also thought that continuing with the yearly neuropsych tests were not necessary except that he thought it seemed I needed them. Since this one is leaving the area, we're about to start over with a memory clinic. Wondering whether I should push for that PetScan. He has BlueCross and Medicare/
My neuro, whose reputation is very good indeed, says my husband has "dementia." He says that the more dementia is studied, the more difficult it is to make an EXACT diagnosis. The only reason for the various diagnoses is to try to figure out what meds might give them trouble - but you can find that out by experimenting. My husband, for instance, gets antsy and impossible on Seroquel, the exact oppposite of what we want. He says that there is now discussion of "FTD Alzheimer's" as well as "classic FTD" And that there is very little that can be seen with PETs and CT scans etc - that promising work is being done at this point but that it's no more than "promising" now.
I listened to the web seminar on Lewy Body Dementia, which is my husband's diagnosis. One of the scientists presented a study where they did autopsies to see how well they were differentiating Alzheimers and Lewy Body Dementia, which have different markers in the brain (plaques and tangles vs. Lewy bodies). The study showed one group with just Alzheimer's, one group with just LBD, but the largest group had both kinds of brain damage. I don't know about FTD but at least in the case of Alz and LBD it is common to have both.
My husband has FTD, and has been on all the Alz drugs mentioned, but is off everything now. The FTD expert at our med school says none of them help and often hinder. Aricept caused horrific aggression, Exelon did zilch, and Namenda caused problems also...better off without any of them. He does take MCT Fuel three times a day, however...at least that doesn't hurt.
Finally I have receive a call today it is Wednesday the 24th of June and we connected. The doctor said from the ambulatory EEG my husband is having quite alot of seizures throughout the day every few hours and he said that on days that he seems really confused is probably when the seizures are really kicking in. He said he is declining fast and the seizures are attacking the frontal lobes. He wants to immediately start him on Kexpro I guess this is the correct spelling and asked if we could come to the office tomorrow to start it because it is quite expensive. I haven't had a chance to look it up yet he said the generics don't really work to well. He also said to keep an eye on him that if I notice him going into that blank stare or the look where is eyes are blinking real fast he is having a seizure, I told him he does this almost everyday at some point. He said on the test results it show that when he has them it last for about 20-30 seconds. Has anyone experience this . When reading on relation of Alz and seizures it states it happens in the later stages.
Most petit mal seizures last only a few seconds. Most commonly they involve staring episodes or "absence spells."
The person may stop walking or talking in mid-sentence, and start again a few seconds later. The person usually does not fall. The person is usually wide awake and thinking clearly immediately after the seizure.
"Spells" can be uncommon or occur up to hundreds of times in one day. They may occur for weeks to months before they are noticed, and may interfere with school function and learning. The seizures may sometimes be mistaken for a lack of attention or other misbehavior. Unexplained difficulties in school and learning difficulties may be the first indication of petit mal seizures.
Symptoms of typical petit mal seizures may include:
Muscle activity changes No movement Hand fumbling (especially with longer spells) Fluttering eyelids Lip smacking (especially with longer spells) Chewing (especially with longer spells) Consciousness changes Staring episodes (unintentional) Lack of awareness of surroundings Sudden halt in conscious activity (movement, talking, etc.) May be provoked by hyperventilation or flashing lights, in some cases Abrupt beginning of seizure Each seizure lasts no more than a few seconds Full recovery of consciousness, no confusion No memory of seizure Atypical petit mal seizures begin slower, last longer, and may have more noticeable muscle activity than typical petit mal seizures. There is usually no memory of the seizure. Symptoms may include:
Unintentional staring Lack of awareness of surroundings Sudden stop of conscious activity (movement, talking, etc.) Hand fumbling Fluttering eyelids May be provoked by hyperventilation, in some cases May have slower, gradual beginning of seizure Each lasts only seconds to minutes Recovery may be slower May have short period of confusion or bizarre behavior No memory of seizure May change into a different type of seizure (such as a grand mal or atonic seizure)
Support Groups Epilepsy Foundation of America -- www.epilepsyfoundation.org
Thanks Sandi I have been trying to search for seizure meds and this one never came up, but I am sure this is what was said. I am going to get a starter kit from the docs he said, he mentioned it is quite expensive, but is needed. Do you know anyone on this medication?
On the subject of combined diagnosis, my husband has cardiovascular dementia. I'm pretty sure he has Alzheimer's as well because if I go back before the big event that gave him the cardiovascular dementia he had early stage (2 and 3 and maybe 4) symptoms then too. It is very common for those two diseases to go together.
They have put my husband on Keppra XR 1000mg daily.The side effects are delusions, hallucinations, tired, weakness, depression, suicidal thoughts, etc. he has already been having these symptoms from the Alz I wonder will they get worse. when I went on the Keppra XR website it states for tonic clonic seizures formerly "grand mal ", the seizure affects the entire brain of course my husband seizures are more like petit mal and abscense seizures and he said this drug wil be more effective than the lamictal. We will start it and see what happens.