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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!!!

Just trying to leave no stone unturned...

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?
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Southernwaver Oct 2, 2024
Going down this hole, there is a relationship between Lupus and dementia.

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.”
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This is really weird. You definitely need to get another opinion.

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.
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Dinisha2024 Oct 1, 2024
My mother does not drive because she was already confused before the seizures started. She is now on medication for the seizures. I have tried to get other opinions this was the third neurologist. He said “you have to other good doctors why are you here” if they were good doctors they would have run the proper tests and I wouldn’t have been waiting 7 months and things keep getting worse. I mean how can someone be properly diagnosed without a test result to prove it and he says don’t waste my time getting the Pet Scan so I guess I’m just supposed to take him at his word with no proof.
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If your mom is only 54 years old it is more than likely early onset Alzheimer's which can last 20+ years, so it's best that you now start educating yourself about this horrific disease, as you're in for a very long haul. The book The 36 Hour Day is a great place to start, and Teepa Snow(a dementia expert)has many great books available and videos on YouTube you can watch.
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.
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Dinisha2024 Oct 1, 2024
My mother does not live by herself now and she does not drive.
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"All he did was have his nurse perform a memory test on paper and ask a few questions and said she has Alzheimer’s." Memory tests of this nature are what's used to determine dementia and Alzheimer's in a person, combined with symptoms. Once a diagnosis is made, there is little else to "do", unfortunately. You can get her meds for anxiety and agitation, but there is no cure for AD or dementia, sadly.

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.
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Dinisha, I'm so sorry you and your mom are going through this, but as Geaton, Alva, Lea say, and others say, the diagnosis has been done. Now it is up to you to get all things in order, the paper work, the help, and your own peace of mind. It is a huge job, but you've shown so far that you are up to it by getting her to the neurologists. They were not nice to you and did not explain things well and it is very understandable that you don't completely trust them. Now you must find real help and others here have given you information on that. Read what you can about early onset Alzheimer's and take care of your mom the best you can. Get help for her, in home or a facility, to make sure she is kept safe. Love her. I found the worst of it all was being on the phone with insurance companies. The elder law people were good and the caregivers were mostly really wonderful. You can do this, sad as it is. Stay on here and let us know how things are going.
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Your Mom's primary doc should have done all sorts of bloodwork at the first appointment to get a lay of the land and rule out lots of possible health problems.

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.
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AlvaDeer Oct 1, 2024
Lymes and its mimicry may be getting missed in all the cracks. Hope not.
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Your Mom is only 54 and you are so right. We cannot let this go with the guesswork that usually goes along with Alzheimer's. You MUST have a better track record of what could be being missed. She needs the PET and she should have full blood panels even for Lyme's and other tick-borne disease. She should be ruled out for a missed injury and possible traumatic brain injury. She should have lumbar puncture.

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.
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When I put this prompt into ChatGPT (all of the Mom's symptoms), 10 diseases came back:

"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.
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Dinisha2024 Oct 2, 2024
Thank you!! We have an appointment with the primary doctor Friday and I will talk to her about all those things. I will update with any valuable information that I get.
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Dinisha:
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.
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Southernwaver 21 hours ago
Yes, we are invested in this. Please don’t ghost us.
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I am so sorry for your and your Mom's situation and pray for you getting definitive answers. I agree with those who say exhausting all other possibilities is important. Does her primary doctor or insurance have a care coordinator? If so, that person can help point you in the right direction. You need to be able to have confidence in the info you receive, for your peace of mind. Good luck and God bless.
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