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I Have Alzheimer’s or Another Dementia
Can some of you relate to this
When I speak, I'm often trying to find the word in my mind, then end up with a synonym. I end up frustrated like I can't ever find the right word, altought I'm not sure if what I'm looking for even exists sometimes.
If I read I forget everything I read very quickly, sometimes recalling the topic. 20 minutes later about everything is gone in my mind. Kind of messed up and blury. When I keep thinking and try to recall something I read it's almost impossible even after thinking about it for a few minutes.
I used to be able to outline what I would say in a conversation, and talk about those topics when time comes. Now I can't, I will talk about whatever comes to my mind in the moment.
I'm a bit lost in my mind when referring to seasons, days. Even though I have things to do everyday.
If I learn something like a task to perform I might have forgotten half of it by the next day.
It takes me a really long time for planning when there is more then 2 elements to handle. Because I have to recall them, then do the tasks. I may have to recall them sporadically 8 times before perfoming the tasks. If I recall all of them. And this over a much longer period of time than before. Planning used to be quick and easy for me.
Sustaining reading is getting hard. Articles were fine until now. At this point articles are hard to go through, it's like my eyes or brain stop collaborating quickly.
My vision seems darker.
I'm very young, so altough I've noticed many people of my worries, since these symptoms are progresssive, they will not really take it seriously since it's never something that would come to their mind due to my age. There is no solution to these issues anyways I was told. So I'm just watching things degrading each day until it's too hard for others to think this is somehow close to normal. CT scan was normal last week, doesn't appear to be anything like cancer.
Thanks for reading, Have a nice day!
I would agree with all but this as I do not understand ” My vision
seems darker.” That was me many years ago and now.
I have the same symptoms. After thorough medical, neurological and psychological evaluations, it was determined that I do not have Alzheimercs Disease. My symptoms are due to a different disease process. Thorough testing and medical evaluation is necessary. Do not settle for less.
Did you finally learn what you have? It's the fact that it's progressing that worries me the most. This is not what I had envisionned for my futur, I was making new life projects. I guess I will just keep going until things get clearer..
The last year and half it feels like areas of my brain tried to compensate for others that are weaker and became stronger.
Have a nice day!
Maybe I have vision problems due to dry eyes I'm not sure. Also people often tell me I speak too loud these days. Could be unrelated too. When it's silent I also hear a slight buzing electric sound in my ears.. who knows.
I've been trying a lot of supplements one by one in my personal pharmacy to see if some of them can make my mind a bit clearer or relief my dull headache.
The fact that this state has lasted for years for you is somehow encouraging me a little. Althought if I had Alzheimer or dementia this young I think things would go fast.. statistics would be against me.
Hello Looking, I wish I could reassure you, but I can't. You really need to be bringing all of your concerns to a knowledgeable, competent and trusted primary care physician as a start. This is because there are many dementia mimics and your symptoms could be due to several different causes. I can think of a few right off the bat. You could be losing your hearing and/or have tinnitus. Medications or supplements could be giving you side effects.
You need to write everything down, and take the list to your doctor. You need a thorough evaluation and several tests. Do not expect to find your answers from this message board or any other or any website. Keep reading, however, because you need to know what questions to ask.
Regardless of the results, we all need to make preparations for our futures. We still can have dreams and goals. But we need to be realistic. Life is moving on.
Take care of yourself.
I totally agree with Iris. You need to do something ASAP and stop
taking other supplements as they may end up confusing things. None of us planed
this and I am sure there is never a good time for it but you must be brave and
deal with it.
Were do you live as I have resourse all over the world.
I live in Canada. I came on this forum to be able to discuss my memomy issues since people around me don't like to hear me talking about memory loss, which they attribute to stress, sleep, nothing serious. The doctor who prescribed the CT scan thought it could be only cancer at my age. This forum has already helped me share about it start to accept things a bit better.
I don't think people with Alzheimer normally have a quickly degrading physical health due to the illness especially early on. My grand mother has Alzheimer, she is completely confused and doesn't know who I am now but she is still in better shape than me. My physical health keeps getting poorer since last summer. I had an opportunistic infection that puzzled doctors. Difficulty swallowing food also, throat swelling, I laid in bed for weeks at that time. I'm low energy and sleepy altought the fungal infection has gone. Work is less and less sustainable physically and mentally no matter how little I work now. I think I could sleep 15 hours a day.
After reading on a few neurodegenerative illnesses I found Creutzfeld Jacob has similar symptoms to what I am experiencing including the dimming vision. It also attacks nerves related to hearing and gives people tinnitus. People with the disease also have rapidly progressing dementia. I certainly hope I don't have this, no one knows for sure but if I do the prognostic is a sure death with no treatment or cure, most of the time within a year. And the only way to diagnose you for sure is during an Autopsy. So I feel less in a hurry to get investigated further since very obvious symptoms would show shortly in that case. I don't want to appear overly dramatic. Maybe this can sound 'psychiatric' a little but if it were a psychiatric condition it would be like a dream come true. I'm just trying to understand a little.
Thanks for reading me
Thanks for providing more history, Looking. At first, you presented as a person just beginning this medical journey. The medical systems seem to be dyfunctional for PWDs in general, because it can take months or years to get a diagnosis of one of the dementias, even though it is one no one wants to hear.
I have a few questions. Were you tested for sleep apnea? Were you evaluated for lupus? (I ask because I have lupus. This i also a difficult disease to diagnose. I am not saying tht you have lupus, mind you.) Did you have neurocognitive testing done by a neuropsychologist? Please review your medications with a pharmacist for cognitive side effects; it is not enough just not to take too many at the same time.
You are doing all the right things. Except for scaring yourself. It's good to read, but you are reading about zebras. You did not give your age. Are you still working? How are you doing with that? Do you handle your own finances and other affairs? If not, this is significant.
It is difficult to get others to pay us attention. Keep making notes and consult a medical professional when indicated. In the meantime, keep living your life. Make memories with people who are important to you. Keep reading and keep posting.
I have 367 connections in Canada. Lets try to narrow that down by
the area. Feel free to send it privately to me. Please also start to create a
list of all of your issues including what you already said on this site.
I had to copy and paste so I can answer all the questions. This really started in April 2019. Context: I have lots of allergies especially to dust, my immune system is very reactive and for once I wanted to work in an office with better working conditions (which had carpet and new toxic materials everywhere, with walls and windows not letting air go through.) I started working there September 2018 and it made me really sick from the beginning, extreme inflammation, I was taking lots of meds (antihistamines, inhalers, montelukast, restarted omalizumab) and supplements, end of October I was really struggling and feeling the issue with every breath (allergic ashtma, but I was highly determinated to stay) I finally found a doctor who would write me a sick note the time to fight for accommodations with employer. I was off november and december, came back in January of 2019 when they started vaccuming my cubicule which didn't do much (distance work impossible in that department). I wasn't expecting to even last 2 weeks but I was doing better. Taking lots of meds but my immune system wasn't as combative as before. Then my immune system seemed weak and I caught everything around March: stomach flu, a cold that turned into bronchitis because of post nasal drip and my immune system being too busy fighting my workplace rather than the cold. I got a doctor's note to be off for a week because I couldn't fight the bronchitis while at work, took antibiotics. During this cold /bronchitis I kept rinsing my sinuses with tap water and developped a dull headache on the right side got paranoid I got infected with a protozoan infection and stopped rinsing my sinuses with tap water. I changed department to somewhere a lot more boring but with chances to work from home. They gave me part time work from home, for a week I was better then my shape dropped again. I'm not sure if the small water leak in my appartment kept triggering my immune system or if it's just a coincidence. For the memory it was more double scheduling everything, forgetting to bring a check to an appointment, forgetting I had something scheduled, etc. at that time. I had my first fungal infection of the oesophagus and throat (link to inhalers maybe) around July. Then it came back stronger with throat swelling in September. With this physical episode it seems my memory and capacities dropped dramatically. And when I tried to come back to work I was drowning in my asthma so left after 4 days of work. (Sorry it's long and probably not all related) I just wish I had not put myself through this.
As for the questions: when I realised I was starting to forget paying bills too much I set up automated payments. My money was in a few accounts I moved it all to one. I started to set up alarms in my phone for many things. Sometimes it doesn't matter too much because I forget one second after looking but just in case. I keep things simple I use my credit card and pay it by a transfer about once a month whenever I think about it.
I'm living mostly on savings, my plan was to work part time and go back to school meanwhile, to study something that would take account of my limitations. I don't think it's realistic now. I wanted to have a plan anyways in case I recover, and since I don't feel there is anything I can do anyways. These days just paying attention and going to the class would tire me too much. It all seems to go very fast. Like I couldn't play a video game too hard for my eyes and focus. Piano is no longer an option either, much more difficult and tiring.
I have worked 5 days since I quit end of October, I found it extremely hard and exhausting, and like it deteriorates me even further. If my condition deteriorates so fast I would be placed or taken care of by the public system within a year and I could cope by then financially. If I recover I will work more. I started a new job which is 3 days a week. I'm not sure how long I will stay there it's a mystery for now.
A doctor told me the only thing I could do about my progressive memory loss is to get tested by a psychoneurologist. Then my sister convinced me not to do that because even if they found something there would be no cure and it's expensive. She is not completely wrong.
I didn't have any tests for sleep apnea. No one ever suggested the possibility. I saw the internist doctor and asked him to test for autoimmune diseases, I have an uncle that has them. And my immune system is usually hyper reactive. He prescribed some tests and never followed up. I assume there was nothing special showing. I was supposed to have an other appointment in the future I'm not sure when exactly. I may call the clinic.
I am not taking anything with cognitive side effects. Just allergy stuff. I can sleep in 15 seconds now I would never need sleeping pills anymore. A lot of my physical symptoms could be associated to nerves (burning sensations).
I want to be prepared for whatever and grieve if I have to. I also want to prepare the people I care the most about in case things don't go so well. I spend a lot of time with those who are close to me and already let go of the unnecessary. I'm 35 years old.
I had to copy and paste so I can answer all the questions. This really started in April 2019. Context: I have lots of allergies especially to dust, my immune system is very reactive and for once I wanted to work in an office with better working conditions (which had carpet and new toxic materials everywhere, with walls and windows not letting air go through.) I started working there September 2018 and it made me really sick from the beginning, extreme inflammation, I was taking lots of meds (antihistamines, inhalers, montelukast, restarted omalizumab) and supplements,
Read what Larrytherunner has to say about montelukast. He had an interesting thread on this board about a year or so ago, and several threads on the Clinical Trials board. This is just FYI, not that I think you should do what he is doing.
I'm living mostly on savings,
If you cannot work, you will have to go on disability. I don't know how that works in Canada. Your savings will run out eventually.
Before applying for disability, you can ask for vocational rehabilitation. You would need yo disclose the nature of your disability. Again, I don't know how this works in Canada.
Neurocognitive testing will confirm the nature of your deficits, whether from brain disease or from psychological disorder or learning disorder/attention deficit, for example. If there is any kind of diagnosis, you probably will become ineligible for qualifying for long term disability insurance. You might already be ineligible, due to your medical history. Having aspecific diagnosis can avail you of more resources, because people will take you seriously. But there are few resources for younger PWDs.
I didn't have any tests for sleep apnea. No one ever suggested the possibility.
It's just a thought for completeness of the diagnostic process. Sleep apnea can cause some of the complaints you have, and sleep apnea is treatable, whereas dementia is not.
I saw the internist doctor and asked him to test for autoimmune diseases, I have an uncle that has them. And my immune system is usually hyper reactive. He prescribed some tests and never followed up. I assume there was nothing special showing. I was supposed to have an other appointment in the future I'm not sure when exactly. I may call the clinic.
Don't assume. Get answers. Get and keep copies of your records for your own files.
Many antihistamines have memory and cognitive side effects.
The dementias are unusual before age 65, and very rare in your age group, although not impossible. Keep seeking answers, but don't stop living your life.
While I am far from being a doctor, I would have to say I don’t
think your issues are related to a progressive dementia. I think there are
many other things and test that need to be done at this time before you go down the dementia path.
If your body is so sensitive to things, I would do some basic house testing for
where you live. There are many kits sold today that you can use to test for low
pricing. Let doctors fix tose issues and insure drugs are not adding to your isssues.
Iris using your Dr Hat do you think I should send her to a dementia
contact path? I am thinking that may not be in her best interest at this time.
Michael, I am not posting as a doctor, but as patient who has gone through much to get some understanding of my own cognitive and memory issues. I don't know where you want to send Looking, but it seems premature to me at this time.
Great as that is what I thought also. I am InTouch with the person
and waiting on them to make a decision on how to move forward. I should have known
better than that to as how I asked you that question or worded it.
It's easy for doctors to recognize mid-stage and late stage dementia in the elderly, when it is obvious to everyone. Nevertheless, the doctor's job is still to discern treatable and potentially reversible causes of dementia, even in the elderly.
Addendum: Doctors and other professionals are not so familiar with patients with early stage dementia or what advice to give them. That's why these message boards are so important, because here is where we can learn what to do for ourselves.