It hurts me to write this!! I know that none of you are doctors but I just need some advice. Please leave the criticism. Ok so last year around August I noticed some things happening with my mother. I noticed she had anxiety and was panicky. She sent someone a text and it didn’t make sense. She came home from work and went to sleep when she woke up she said she missed work and asked what time it was. She eventually started crying and the next morning she didn’t remember it. There was also another incident where a cousin was explaining to her what time he was going to pick her up to go to the football game and she didn’t understand what he was saying. Now after these two episodes she went back to normal. Eventually, she started having diarrhea and was going to the bathroom 4 to 5 times in the mornings, she started having abdominal pains, lack of appetite, and weight loss and the confusion got even worse. She would say that she was tired even on her days off from work. Turns out she had an h pylori infection. She took antibiotics the diarrhea and abdominal pains went away. They say that H Pylori can cause absorption problems and she became chronic anemia and she is on iron medication. She had a MRI in November then the doctor had some insurance problems so I wasn’t able to see him and the primary doctor made appointment with another neurologist. Maybe it’s me but these doctors are not helping!! This neurologist won’t stay in the room long less than ten minutes. Says she has dementia but it’s mild performed an EEG. The nurse called says EEG was abnormal and goes to his office he says it’s nothing to be concerned about. Wants to do a long term EEG at home. My mother was hysterical as she couldn’t sit in one place for that long to do the EEG so we had to cut it short and he says it came back normal. We saw him again a month later she was different as things had got worse. I asks some questions he says unless it’s an infection it won’t get better and he says let him study it but what exactly is he studying???He writes prescriptions and that’s it does not explain anything I need to do. A month later she has an actual seizure when she has never had one before. MRI does not show anything. Afterwards she started having real bad headaches in the mornings that wouldn’t go away with regular medication. That next month she had another seizure and was put on seizure medication and it helps with the headaches but she still has headaches sometimes. Neurologist didn’t explain the headaches or seizures just prescribed medication and no additional testing. The primary doctor recommended that I go back to the other neurologist as the insurance issue had been solved. This doctor was very rude with no bedside manner but I have to stick with him because he is a big doctor and he can do more for her than the other doctors. However, I did see another neurologist today because it’s about yo be Holiday time and I just want someone that will listen and help. He tells me I have two other good doctors and why was I there. First they are not good doctors because it has been 7 months and no one advised me on what I need to do how does a doctor speak for other doctors when they are not even a patient. So this doctor has his nurse perform a 15 minute test where she asking her to perform some tasks and asks questions. The doctor comes back in and says she has Alzheimer’s and it is progressing rapidly to enjoy the time I have left with her because eventually she may not be able to swallow food. Says the seizures are caused by the Alzheimer’s and that she is going to need a caregiver. He asks about her parents. Her dad is healthy and in his 70s her mom died in her 50s from ovarian cancer and he says if her mom had lived longer she could have had it but no one else in the family has had Dementia or Alzheimer’s. He says an MRI wouldn’t show it but a Pet Scan would. He said he wouldn’t waste time getting the Pet scan. I’m lost for words!!!
https://www.alzheimers.org.uk/blog/what-link-between-seizures-and-dementia#:~:text=It%20quickly%20became%20clear%20that,could%20have%20been%20epileptic%20seizures.
Dementia is usually most accurately diagnosed by discounting all other health/medical possibilities. Your Mom was having more than 1 health issue at a time, so it was tricky to sort through what was happening.
It would help us to give you best guidance if you could provide more information, like:
What state/county does your Mom live in?
Does your Mom live alone or with someone?
Does she take any medications daily/ongoing for any health issues (this is connected to her living arrangement, since if she is living by herself and having memory problems it is highly likely she is not taking her meds properly, or even at all so requires close oversight).
If her primary doctor has done testing/treatment for all other possible physical health problems (like UTI, diabetes, HBP, thyroid, vitamin deficiency, etc) then, if the neurologist did the proper scans/diagnostics and saw signs of dementia/ALZ there is really nothing to be done about this diagnosis except to provide the proper care and protections for your Mom. She is so young (my friend's Mom was 58 at the time of her diagnosis). Others get it even younger.
Help your Mom get her legal ducks in a row, If she's in the US she will need to assign a PoA to legally manage her affairs and make decisions in her best interests when she can no longer do so. She should be encouraged to create a Living Will (Advance Healthcare Directive or POLST) and a Last Will.
Since it seems she already has a formal diagnosis don't let this deter you from taking her to an elder law attorney. The attorney will privately interview her for legal capacity (plus make sure she isn't being coerced into creating the documents). The bar is low for legal capacity so don't make any assumptions, just make the appointment and encourage her to go.
This forum is an excellent source of support and information, so -- use it as much as you need.
I wish you and her all the best that is possible and peace in your hearts on this journey.
And yes, eventually your mom will not be able to live by herself, so it's best to get her ducks in row now with her care and legal paperwork such as will, POA's, and POLST or MOST forms all filled out before she gets too far along for any of it to be legal.
Take some deep breaths and take just one day at a time. You're going to be ok.
You need a second opinion! You need to put in a grievance to the insurance company and tell them you need a new doctor! I had a problem with my daddy getting his cataracts done it took me six months! I was on the phone with Kansas, Florida, New York, customer services - I finally put in a grievance and within two weeks we were in the hospital having it done. Know that I have said a prayer for you and your family. Hugs
Your first step should be getting the seizures under control. Speaking from personal experience, you can be mentally “out of it” for multiple days after having a tonic clinic (grand mal) seizure. Even a absence (petit mal) seizure where one does not lose consciousness can leave you very disoriented and confused for multiple hours or more.
You also need to prevent her from driving. Check the laws if your state/province to see when she can drive again. There is usually a seizure free period if multiple months required.
I always got a very specific type of headache after a seizure. The best way I can describe it was a dull pain when I held my head still but an intense pain with nausea when I moved it.
I had the absence seizures as a kid and was misdiagnosed with all kinds of things until I finally had a tonic clonic and was correctly diagnosed with epilepsy.
I am so dreadfully sorry for this dire diagnosis.
Let me start by saying I am an old (82) retired RN. When I started my nursing career there was no diagnosing Alzheimer's, FTD, Lewy's, vascular, and the many other kinds of dementia. There was ONLY "senility". We have come a long way in some ways, because our more sophisticated diagnostics can tell us so much more, and more quickly.
HOWEVER the sad truth is that we are only beginning. We STILL rely for a DEFINITIVE diagnosis, finally, on autopsy after death.
That your Mom had to deal with H Pylori amidst all this is horrible, but unrelated to her dementia.
YOU, Denisha, did it all right. You followed up and you followed up and you followed up. ALL of the tests have been done.
And now, to the best of mankind's ability to diagnose these things, the answers are in.
Do know that the seizures may have been the final symptom that caused certainty--they are common to Alzheimer's.
There is little you can do now but what you were advised to do. Enjoy the time you have and learn all you can. Watch Teepa Snow videos; where you will see mirrors what your mom goes through. Google them online. Read all you can about this disease.
Sadly your mother apparently has what is called Early Onset Alzheimer's. It often progresses much more dramatically and much more quickly than later onset.
I am so horribly sorry. You will now stand witness to something that is devastating for families. And your mother will go through this devastation firsthand. There is really no way around it. When my brother was told he has "probable early onset Lewy's by symptoms" he learned what was coming for him. He said he was sad to know that and hoped to die before it could "get him" and rob him of everything. And he did, to his and my relief, die of sepsis from a small wound 1 1/2 years later before most of his mind was lost. Meanwhile we explored together his disease, and spoke so much about how we saw the world so differently. Our ability to talk about it kept its terror from his door more than I can say. We were lucky.
There's so little I can say to you that can be of the slightest help to you. Do go to Alz.org for help, for advice. There are also groups on Facebook.
My heart goes out to you. This is devastating.
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your mom. Alz.org is a wonderful resource with an 800 phone number to call.
I used to work in a Memory Care Assisted Living facility where we housed a few female residents in their late 50s and early 60s who had advanced AD or dementia. It's occurring more and more frequently these days, where younger folks are being diagnosed with early onset illness.
I'm so sorry for your situation. These types of diagnoses are very hard to process, I know. Wishing you strength and patience as you navigate your way thru this difficult time.
They did everything correctly to rule out other causes and to confirm her diagnosis. It doesn’t matter that you don’t think they did stuff correctly. They did.
You now need to learn about the disease so that you can best help your mom. Good luck.
“Learning that someone you care about has been diagnosed with Alzheimer’s or other related dementia can be life changing. Coming to terms with the diagnosis requires time. Immediate reactions of denial and fear are normal and may help you and the person diagnosed process the grief you are feeling.”
Please read this article.
Did your Mom ever get bloodwork done after she recovered from her h. pilori infection?
From one of your responses below you seem to think the neurologists should be doing this but I don't think this is their purview... they conduct different types of testing (scans, spinal taps, etc). Blood/lab work is first-level triage that can reveal a lot and usually happens at the primary visit. That's not to say there isn't blood/labwork that will look for other, more rare problems. But again, I don't think it would be through the neurologist necessarily.
As far as I can research, this is a list of issues that can create dementia-like symptoms. Many (but not all) of these would be revealed through examination, bloodwork or scans.
Brain Tumor
Diabetes
Huntington disease
Infection
Vitamin deficiency (including B12)
Traumatic brain injury
Creutzfeldt–Jakob disease
Wernicke-Korsakoff dementia (from alcoholism)
Normal pressure hydrocephalus
Medication side effects or incorrect dosing/compliance
Thyroid disease
Stroke
Urinary tract infection (UTI)
Congestive heart failure CHF)
Endocrine abnormalities
Hypertension
HIV-associated dementia
Mental illness / depression
Fatal familial insomnia
You can go through all these with her doctors one by one to make sure they've tested for them. If all her doctors discounted all of these through examination and testing, then I can understand why they would think a PET scan might only tell them what they already have concluded is the correct diagnosis.
You will need to decide if fighting for the PET scan will be worth it.
https://covid19.nih.gov/news-and-stories/rapid-progression-dementia-following-covid-19
(if mom had the beginnings of EOD, and then had Covid, this could explain the rapidity)
54 is very young. It can happen, but I would be pushing hard to rule out other diseases/conditions too.
Could there be brain injury (ABI or past TBI) brain tumour or hydrocephalus?
Brain MRI has been done, yes?
Is there a gene test that would identify & assist with diagnosis?
Given her age and all that a missed diagnosis of a young person could mean is there any way you can go to her primary and say you need referral somewhere like Mayo Clinic, a University Hospital in your area. Just SOMEWHERE.
I can only imagine how desperate you are feeling.
This reminds me of that woman doctor who created the series of articles for New York Times "What is wrong with this patient" and got opinions from around the world diagnosing some patients who couldn't be previously diagnosed. Netflix has a series about it. It's called Diagnosis, and still is on Netflix for those interested.
Neurologist #1 says what?
Neurologist #2 says what?
Neurologist #3 says what?
Has she had blood work by her family practice doc or the first doc you took her to? You should be able to find these things through patient portals.
Have you thought about doing 23 and me for her to see if she has any Alzheimer’s genes?
Late-onset Lupus can cause dementia-like symptoms and can include seizures early on, headaches and extreme fatigue. Having an infection can initiate lupus, as can some medications. It is more common in African Americans than in Caucasians and is also more common in people of American Indian and Asian descent. It also is not easy to diagnose, often taking months or years.
What is the most reliable test for lupus?
Anti-Nuclear Antibody (ANA) Test. Anti-nuclear antibodies (ANA) are autoantibodies to the nuclei of your cells. 98% of all people with systemic lupus have a positive ANA test, making it the most sensitive diagnostic test for confirming diagnosis of the disease.
Best doctor to see for lupus is a rheumatologist.
https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
https://www.lupus.org/resources/common-symptoms-of-lupus
Has any of your Mom's doctors mentioned lupus as a possibility?
https://www.ajmc.com/view/dementia-tied-to-most-common-form-of-lupus-study-finds
“A new study has found a significant association between dementia and the most common form of lupus, and that patients with the autoimmune disease are at high risk for early vascular dementia (VaD) and should be screened to prevent occurrence.”
One more thing.
The DE-NILE (denial) word.
You are going to hear it over and over and over again. When first you came here I SAID it. I said that I believed the third doctor. I believed it until I started really thinking. What about Lyme's. What about Lupus.
And until you said "LOOK this is my MOTHER; she is 54" and told us all the tests aren't run. It sent me into the search engines.
More and more I believe you are right. She is FIFTY FOUR and could be locked away for life with a curable disease that (golly. gosh) got MISSED.
She must have all the tests.
Sad thing here is that genetic testing, PET scans, all expensive and insurance is not going to want to do it.
You are going to have to set aside some of the driving anger that is motivating you and get ready for the long haul fight, inlisting everything and everyone you can in getting this done.
"Denial" is going to be what EVERYONE says to you. As in "Oh, you poor dear uninformed child.....you're in denial". You are going to have to march past that just as you did here. Because there are two answers to that:
1. This is my mom and she is 54.
2. The tests that would rule out everything else are not done. They are Lumbar puncture, full blood work up including testing for lyme's disease, PET SCAN and genetic testing. And those are only the ones I know of.
The sad truth here is that the only real way until Alzheimer's is soooo advanced that the tangles show on MRI to diagnosis it is by ruling everything ELSE out. That hasn't been done.
So when you hear "denial" shrug, smile gently, say "Golly, how did I know you would say that?" and move on.
My heart goes out to you and I wish you the best of luck and hope you will ask mom's insurance for someone to guide you in this. Most have specialists. If you can possibly get a nurse manager for your case, possibly afford that. Do Go-Fund-Me or anything you can think of. You need the big guns.
Young onset dementia happens under age 65.
“For most people with young-onset Alzheimer's, the cause is not related to any single gene. Researchers don't fully know why some people get the disease at a younger age than others do.”
https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356
Yes, of course, making sure everything else is ruled out is essential. We know from this post, mom doesn’t have a brain tumor or anything else showing up on imaging.
It’s happening to the mother of one of DH’s nurses. This mom is in her early 50s also. I will also add as a side note that this lady is an anti vaxxer and has had covid a few times.
Since Covid is a novel virus, there are untold things we will find out as the next 20 years of research continues. As with the novel 1918 viral flu, diseases continued to show up years and decades later.
I’m not saying it’s covid in either of these cases. I’m saying no one can rule out that we will get to see an uptick in young onset dementias because of covid.
What I suggest to OP is to say to the docs and providers “my mother is 54. What would you do if she was your mother?”
As far as I can tell, 3 neurologists have said she has young onset dementia.
OP’s mother is Gen X as I am so I am interested in this. What is happening to her mother is simply awful.
I do think OP should fight for a PET scan.
"what disease has all of these symptoms:
- decline in cognition and memory
- confusion
- chest pain
- headaches
- seizures
- lethargy"
"
1. Encephalitis
2. Hypertensive Encephalopathy
3. Systemic Lupus Erythematosus (SLE) with CNS Involvement
4. Meningoencephalitis
5. Paraneoplastic Syndromes
6. Metabolic Disorders (e.g., Severe Electrolyte Imbalance)
7. Toxic Encephalopathy
8. Cerebral Vasculitis
9. Mitochondrial Disorders
10. Brain Tumors or CNS Mass Lesions
Given the severity and the involvement of multiple systems, a thorough evaluation by a healthcare professional, including imaging studies (e.g., MRI or CT scan), blood work, and possibly a lumbar puncture, is essential for diagnosis."
I think the neurologists may have already discounted some on the list through the scans and imaging they performed to date.
For clarity: neither covid nor Lyme's disease include seizures as part of the illness.
Keep fighting the fight. Alzheimers at age 54 would be very rare.
Each time you go to doctors tell them you want to rule out other diseases and at age 54 it would be very rare for Mom to have alzheimers. Keep repeating Mom's age.
Re-read this entire thread. There is good info from the posters.
If anyone has any "Medical Mystery things" here to just "suggest" on a wing and a prayer I hope this question stays up top a while? This is a young woman fighting for the life of a young mom. I would hate to see this mother locked away with a "wrong" diagnosis just because medical insurance won't cover other tests. So many here are commenting with some good ideas to explore. It's what this Forum is about.
I recall you and your mom are to see doctor today.
I hope that you will update and want to send you best wishes and good luck and let you know we will think of you today.