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Can some of you relate to this
looking4relief
Posted: Friday, November 29, 2019 3:57 PM
Joined: 11/27/2019
Posts: 18


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!


Michael Ellenbogen
Posted: Friday, November 29, 2019 5:00 PM
Joined: 11/30/2011
Posts: 2668


I would agree with all but this as I do not understand ” My vision seems darker.” That was me many years ago and now. 


Iris L.
Posted: Friday, November 29, 2019 5:18 PM
Joined: 12/15/2011
Posts: 16191


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.

Iris L.


looking4relief
Posted: Saturday, November 30, 2019 10:51 AM
Joined: 11/27/2019
Posts: 18


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!


looking4relief
Posted: Saturday, November 30, 2019 10:58 AM
Joined: 11/27/2019
Posts: 18


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. 

 


Iris L.
Posted: Saturday, November 30, 2019 3:22 PM
Joined: 12/15/2011
Posts: 16191


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.


Iris


Michael Ellenbogen
Posted: Saturday, November 30, 2019 7:45 PM
Joined: 11/30/2011
Posts: 2668


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. 


looking4relief
Posted: Saturday, November 30, 2019 9:00 PM
Joined: 11/27/2019
Posts: 18


Thanks for answering. Where I live the health care system is very disfunctionnal, and if I don't have one of the most common five diseases, they will wait until I pretty much collapse on the floor before testing me for something else. Normally if you don't have one of those five common diseases, then you have nothing. Even if I collapsed they would probably not test me for something more. This is embarrassing. I can harrass them and hope to get an other few tests. Then there will be eternal delays.. anyways thank you for your advices I will see.
looking4relief
Posted: Sunday, December 1, 2019 6:54 AM
Joined: 11/27/2019
Posts: 18


Hi, I should add that I had extensive blood testing, some of the tests were prescribed by an internist. Also an echography of internal organs. I have looked at differential diagnosis regarding Alzheimer and I believe they have tested me for most curable diseases. There are some more advanced tests for example an EEG but it would show an uncurable illness. As for supplements or vitamins I'm being careful not to intoxicate myself or taking unrecommended doses, I'm also not taking too many at the same time because yes it could intoxicate my liver. It just helps with the headache and makes me feel more focussed sometimes. Time will tell. I have prepared a will and power of attorney just in case over a month ago. It's always good to do this anyways.
Michael Ellenbogen
Posted: Sunday, December 1, 2019 6:56 AM
Joined: 11/30/2011
Posts: 2668


Were do you live as I have resourse all over the world. 


looking4relief
Posted: Sunday, December 1, 2019 11:20 AM
Joined: 11/27/2019
Posts: 18


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


looking4relief
Posted: Sunday, December 1, 2019 11:23 AM
Joined: 11/27/2019
Posts: 18


On a less dramatic note it could also be a coincidence of many less serious to moderate illness hapenning at the same time since my health is a bit weak in general.. Some of them could go away with time who knows.
Iris L.
Posted: Sunday, December 1, 2019 1:02 PM
Joined: 12/15/2011
Posts: 16191


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.


Iris L.


Michael Ellenbogen
Posted: Sunday, December 1, 2019 1:48 PM
Joined: 11/30/2011
Posts: 2668


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. 


looking4relief
Posted: Sunday, December 1, 2019 8:23 PM
Joined: 11/27/2019
Posts: 18


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. 


looking4relief
Posted: Sunday, December 1, 2019 8:28 PM
Joined: 11/27/2019
Posts: 18


This was probably TMI but it gives the whole portrait and I'm not really sure how someone could use this info against me anyways.
Iris L.
Posted: Sunday, December 1, 2019 11:43 PM
Joined: 12/15/2011
Posts: 16191


looking4relief wrote:

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.



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. 

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.


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. 

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.

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). 

Many antihistamines have memory and cognitive side effects.

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. 

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.

Iris L.



Michael Ellenbogen
Posted: Monday, December 2, 2019 8:45 AM
Joined: 11/30/2011
Posts: 2668


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.  

 


Iris L.
Posted: Monday, December 2, 2019 2:11 PM
Joined: 12/15/2011
Posts: 16191


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.

Iris


Michael Ellenbogen
Posted: Monday, December 2, 2019 2:45 PM
Joined: 11/30/2011
Posts: 2668


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.


looking4relief
Posted: Monday, December 2, 2019 5:31 PM
Joined: 11/27/2019
Posts: 18


Thank you so much for your reply
Gig Harbor
Posted: Tuesday, December 3, 2019 10:20 AM
Joined: 3/10/2016
Posts: 591


I had a friend who had CJD not due to an infection. His symptoms progressed rapidly over a year. Initially he had a lot of problems with strength and he began to fall a lot. He became very confused. His symptoms did mimic dementia but progressed very quickly over a year. The doctors did diagnose him correctly before he passed away but I don’t know what tests they did. My friend was 66 and really had never been sick so this diagnosis came as a total shock to him. I hope you find answers to your questions and that you have a curable illness.
looking4relief
Posted: Tuesday, December 3, 2019 10:48 PM
Joined: 11/27/2019
Posts: 18


It was probably the sporadic form of CJD. When the prion protein mutates by itself into an 'infectious' form. Altought it is not caused by and infection. And then destroys the rest of the brain and replicates.. It's a shock for anyone for sure especially for people who have never been sick and concentrate on preparing their retirement. And a lot of people assume they will live up to 90 years old while there are so many ways to die before that. Thank you for your wishes I do hope I have something curable too!
looking4relief
Posted: Friday, December 6, 2019 1:21 AM
Joined: 11/27/2019
Posts: 18


Interestingly I see Alzheimer people at work. They all seem to be over 80 years old and having the old age type of dementia. It looks like they carry the same type of impairments each day, it looks quite stable. They will have the same type of memory loss over the same things. The ones I see are able to walk around and do certain things independently. Dementia and especially old age dementia has a more typical aspect I think. It must be easy for doctors to recognize the disease when they see it.
Iris L.
Posted: Friday, December 6, 2019 11:59 AM
Joined: 12/15/2011
Posts: 16191


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.

 Iris


 
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