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Frustrated & Scared
Posted: Tuesday, June 2, 2015 9:41 AM
Joined: 6/2/2015
Posts: 2

Hi! I'm new to the forum. I apologize for the long post. I'm a 39 year old mother to 4 teenage boys and spend most of my time volunteering in animal rescue, until recently. As of today, I have no diagnosis for the symptoms I've been having. About 4 months ago, my orthopedic doctor did an MRI on me after suspecting that I had MS. He suspected it because of the symptoms below. The MRI showed a small "plaque" in my right parietal lobe but none on my spine. After seeing the neurologist and after several tests, he could not come up with a diagnosis but suspected something neurological was going on. He's referred me to a specialist in Houston that deals with demyelinating diseases. The thing is, the more I research, the more it sounds like I may have early-onset Alzheimer's. I'm not one to self diagnose, but it is what it is. Here are my symptoms:
-memory loss-moderate for about 3 years. More recently, it's quickly gotten worse. For example, I'm seeing a therapist for claustrophobia. I ask him at least 4 times/session what we're talking about. Sometimes I get frustrated and just say, "I'm tired of talking now."
-driving in my neighborhood and not recognizing things though I know I live there
-need at least 12 hours of sleep to be able to function at all, sometimes more.
-mild loss of bladder and bowel control.
-wake up with a headache daily
-Drastic change in mood, and I get angry for no reason and go off on innocent people. For example, I was in a store and an older lady smiled at me. It ticked me off, and I said, "WTF are you looking at old b#*%$?" I then ran out of the store crying. I have no clue why it upset me that she smiled, nor do I ever talk to people like that. I've also been very confrontational in situations that could put me in danger, but I don't care. I've always do whatever was necessary to avoid confrontation.
-I'm starting to become really depressed because I don't understand why my moods are so crazy. I'm on meds for depression, but they haven't worked at all after 4 months.
-More recently, I've become withdraw from any social situations. I just want to stay in my room and be left alone.
-I'm very snappy at anyone at home that trues to talk to me. When they ask me what my problem is, it makes me angry, and I yell or slam doors. Thus is NOT normal for me.
-there's been a few times when I couldn't remember if I'd eaten or not or whether I'd even bathed.
-Also, I'm having episodes where I see thing differently than they are. For example, I was pulling on the chain to try to put our ceiling fan on a lower setting. I kept pulling the chain, and it wouldn't work. My husband told me that I was obviously pulling the light chain because the lights were going on and off. I was looking right at them and couldn't tell they were going on and off. To me they were all on. It scared me so I ran to my bedroom and started crying. I also went out to eat with my family for mother's day. I always get my mom a card with cash. So, I picked out what I thought was an appropriate card for her. When she opened it, she looked at me like I was crazy. I looked at the card and asked her what the problem was. I had gotten her a birthday card that joked about what an old man she was. It wasn't her birthday nor is she a man. When I got it, it seemed completely appropriate.
-a few days ago, I went to the grocery store that I've been going to for 15 yrs. I pretty much know everyone that works there and their names. I was checking out. I asked the lady at the register when she started working there because I didn't recognize her. She said, "Melissa, I've worked here for 20 years, and we talk all the time." I thought she was joking. I did not recognize her at all. Talk about scary.
There are many more things, but this is enough. Has anyone had similar things happen? Does it even sound like early-onset Alzheimer's? I do know that my aunt was diagnosed with it in her late 40s. She lived about 20 yrs after that and died from ovarian cancer.
If this could be Alzheimer's, do we have any specialists in the Shreveport area?

Posted: Tuesday, June 2, 2015 6:53 PM
Joined: 9/12/2013
Posts: 3608

Mswanson -

My understanding about diagnosing dementia is that people go through quite awhile of not knowing what is wrong and there are different causes, some of them treatable.

You mentioned your antidepressant of 4 months is not helping. Check side effects of that even if you had memory issues before starting it and talk to the person who prescribed it - one thought.

You are highly aware of how your memory is working and listed events that felt weird, like being lost close to home and the mood swings. Forget if you ate or not.

You probably we will be asked to take a 4 hour cognitive test that at least establishes a baseline for you. It measures word recall, facial recognition, numbers, spatial stuff, and so on. If your symptoms remain you would be tested again in a year to see if you stayed at the same proficiency - or went up, or down.

I have early onset dementia and believe my first symptoms were almost 10 years ago but altered my life starting about 5 years ago. I lost things, became weepy, had some anger stuff going, wanted to be left alone and finances became difficult (paying bills online etc). Everyone is unique except perhaps for that immediate forgetting, did I just take that pill? what did I come into this room for? forgetting how to do something.

This is pretty difficult for you I'm sure, esp when we act in ways we "never would normally". Having to keep track of things more wears me out. Many voices in a room overwhelm me and I get short tempered. I am now at the word retrieval time.

Please check back, people who know more than me about the diagnostic stuff will reply soon. Worry and stress can cause a certain amount of cognitive loss - even now if I have a few super good days I can regain the ability to do something I thought was gone. So as difficult as things feel right now, expect periods of improvement as you relax your mind in what ever way you can.

My best wishes to you. Sometimes I felt a lot better after making an apology for an outburst, I'm sorry I did that. I did not want to. It feels like something is wrong inside me. Please forgive me." Talking about the odd stuff with someone you trust is a big help as you work through the diagnostic part - and for everything the rest of our lives!

Will look for you again on boards. It is frustrating.

Posted: Tuesday, June 2, 2015 11:38 PM
Joined: 6/2/2015
Posts: 2

Thank you so much for taking the time to answer me. A couple of things. . .

-not remembering to eat, bathe and take medicine were recognized by family members. I now put reminders in my phone to do those things, and it's helped some.

-thankfully, I haven't actually gotten lost. The first time it happened though, my 12 yr old was with me. I asked him how we got back in the neighborhood we just came from, which is 4 miles from ours. He said, "Mom, we're in our neighborhood." I didn't believe him at first. All the trees looked smaller and the houses too. Anyway, he pointed out where we were, and I snapped back into reality. Another time, I was driving home, and the cars in front of me were shrinking and then going back to normal. It only lasted about 5 seconds. That one baffles me. My eyes were checked 5 months ago and we're fine, but maybe I need to go back.

-I my memory issues started about 2-3 years ago, maybe more. I assumed it was menopause because I'd had a hysterectomy when I was 29. But this last 6 months or so have gone way beyond menopause memory loss. It honestly terrifies me because I don't want my husband to have to deal with this til I die. We're already letting his mom live with us to help her out. He's overwhelmed financially as well as emotionally because of my moods. Yesterday, everything he did and said made me very angry to where I was hitting him, lightly, and pushed him away. I spent most of the night crying, and most of tonight as well. Today was much better, but my husband is still frustrated with me I think because I can't explain my mood swings.

-I've been on several different anti-depressants. I'm thinking that I'm not depressed. I'm having so much trouble understanding why my brain is turning against me. Maybe that's why it won't work.

-Two of my biggest memory issues are like you. I am extremely noise sensitive now. I spend most of my time away from my family, sitting on my bed, just due to the noise, mainly from the TV. If the TV is on and anyone talks or starts making any kind of noise, I get very angry!
I frequently try to talk and can't think of simple words like "milk." I'll say, "that white stuff you put on cereal." MY therapist thought I may have had a stroke because it happened so many times in front of him. I also get very ticked off trying to remember my symptoms. I have to put it in my phone when it happens or type it and print a copy to take to the doctor.
-Some of my other symptoms that are likely unrelated are these:
- loss of bladder and some bowel control. I have loss of sensation there. It started about 8 months ago.
-I've lost feeling in my left, outer leg around my knee, and it now goes down my leg and into my foot. I do have 5 bulging discs in my back, but I've had that almost 15 years.
-About 2 times/week, I Have extremely bad muscle pain in my legs and arms, but mainly legs. I will end up bedridden a couple of days when it's really bad.
-My sense of smell has changed. I now am constantly smelling dog poop, skunk and rotten cheese. Coffee smells like dog poop even if I smell the grounds.
I'm sure there's more, but that's all I have for now.
I sure hope you have more good days than bad ones.

Jo C.
Posted: Wednesday, June 3, 2015 1:42 AM
Joined: 12/9/2011
Posts: 13593

Hello Mswanson and a very warm welcome to you. I am so very sorry for what is happening and my heart goes out to you and your family. How deeply frightening this must be for you.

I am an RN whose mother had FrontoTemporal Dementia and whose step-dad had Alzheimer's disease and my MIL also had Alzheimer's.

From what you have written, you have not yet received a concrete diagnosis. I have to say, with your description of your history, at the gut level, this does not "feel" like Alzheimer's Disease. By your writing, it sounds as though something else is going on. In MS, the symptoms you mention rather fit, but Neuro was not able to diagnosis this.

I see you live in Louisiana. Where is the largest University Medical Center from where you live? It would be good to see a multidisciplinary team of specialists headed by a top Neurologist and others at a university hospital center of excellence. No stone should be left unturned and some tests may have to be repeated. I just feel based on your words that there is something percolating that is eluding the doctors and it is going to take very high level medical attention to get things nailed down.

Did you have a PET Scan? Lumbar puncture?

I am so dreadfully sorry and so wish this could be much easier. I think hope for accurate diagnosis lies with getting to the large medical center and seeing the high level specialists.

In the meantime, go slow. Try not to overload yourself and keep your environment structured and keep a routine. Simplify everything you can with your husband's help.

Also, the Alzheimer's Assn. has a Helpline at (800) 272-3900. PLEASE: IF you call, ask to be put in touch with a Care Consultant. Consultants are highly educated Social Workers who can help problem solve, support and may also know which is the center of excellence for you and the issues you are facing.

Please let us know how you are, we will be thinking of you and we truly do care.