Undiagnosed. Developing Dementia?

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Profile: 33 yo non smoker. Social smoker from 18-25. Probably Avg of 1 pack every other month in that time (6 packs per yr). Heavy alcohol consumption 18-23, moderate 23-27, light 27-current (1-3 drinks week) 6' 180 lbs gluten free pescatarian diet. Excercise 5+ times week cardio and weights. No significant prior medical problems or family history of early onset disease. Mother had stage 1 breast cancer (62), in remission. Regular physicals and labwork always normal. Satisfied with professional and social status. Reside in Socal.

The only noteworthy illness was a case of diagnosed oral thrush in 2011. Fluconazole cleared it up, but was never given a diagnosis. Doctors thought it was odd, but all labs came up normal.

Medications: Alprazolam .5 mg daily. Prescribed about 1.5 months ago due to anxiety from health situation

I'll start by saying that I am in bad shape and my friends/family are greatly concerned with my deteroriating health.

Summary: Unable to work or excercise in last 3.5 months. 14 lb weight loss in last five weeks. Drenching night sweats, recurrent infections, Cognitive decline, extreme headaches, mood disturbances, seizure-like episode, pruritus, skin manifestations, lower back pain, abdominal pain, frequent urination, bone pain, change in stools, etc

April '15

Flu-like illness that lasted approximately 6 weeks. Low-grade fever 99.5-101 everyday for 6 weeks. Drenching night sweats, dry cough, body aches, joint pain, minor headaches, fatigue, mouth sores. Loss of 10 lbs. Was not able to work or excercise for the duration. Completely normal basic labs (cbc, mono, stds). Was given a diagnosis of a virus.

Jun-Oct '15 Regained health for the most part. Had two more infections in this time. Low grade fevers and fatigue, both went away within 10 days. The night sweats have been intermittent over this entire time span, but have not went away completely.

Late Oct '15

Recurrent illness with similar presentation. Low grade fever, fatigue, mouth sores etc. However, this time I started to have extreme head pain and brain fog/confusion. The head pain would always be in the same spot after waking up (back left side of head that radiates down to the neck) and extreme pressure throughout head. Confusion, irritibility, short term memory loss, vertigo, blurred vision, confusion, cognitive impairment. I was also experiencing more intense muscle aches and pains all over my body. Pain under both ribs, lower abdomen pain as well. 10/10 head pain.

CT/MRI/Lumbar puncture results negative.

Developed respritory issues. Consistent dry cough for 1.5 months. Violent at times. Spit blood a few times. Two normal chest xrays.

Developed extreme itching of my skin all over my body. From my scalp to my toes and everywhere in between. No rash at this time. Itch began to be focused on nostrils, head, and face. Lasted 3 weeks and is now gone.

Acutely worsening lower back pain. Lumbar Mri has some abnormalities. Will post them, but have been told they are not relevant to my underlying illness. Waiting for appt with ortho.

Purple skin legion on temple. Begins as tiny dot, in five weeks grows to larger than pencil eraser. NP freezes it off (wtf, shouldn't have biopsied w my condition??). Said it was precancerous growth. It flaked after freezing, but is growing back. Will investigate more.

Sudden body hair growth. On arms/chest/pubic region. I had basically no hair on my arms/shoulders 4 months ago. The difference is insane. My gp didn't believe me.

Small skin "scabs" or nodules form on my body and last for weeks at a time. Also develop eczema type rash on elbow for first time in my life.

Change in stools. Decreased frequency, blood on occasion but not recently (tar and red), thin, flat sometimes ribbon consistency, foul odor. Food does not seem to be digesting properly based on how the stools look (white spots possible candida I guess. Can post pics) Colonoscopy and Endoscopy normal.


Bizarre seizure like episode. I move my facial muscles uncontrollably for hours and start making strange flinging motions with my arms. Very wobbly and am.slurring my words. I know where I am, but don't feel in control of my body. All I could do was tell my mom 'I'm sorry". She thought I qas having a.stroke. I could not stop twitching and moving my mouth/nose/cheeks. ER sedated me and gave me CT, was normal. I twitched and was really out of it for about 8 hrs total.

Very frequent urination at night. This has been going on for about 5 weeks. 6-9 times per night.

Otoh, no night sweats for 10 nights. Still have constant lower back pain. Lower spine painful to touch. Bone joint pain is gone, abdominal pain mostly gone, but still odd stools. Better appetite. HOWEVER.

I am having lots of head problems the last few days, mainly concerned with the cognitive deteroriation. The last seven ish days:

-Extremely painful daily headaches 7-9/10. Pain from the moment I wake up until I sleep.

-Losing cognitive function. Can't drive, very difficult to speak, my handwriting is illegible, going to wrong destinations. Going to destination and not knowing why I'm there. Not knowing answers to basic questions. Wandering aimlessly in apt staring at ground for long periods of time. Did not know the name of the president of the us. Can't do basic math. Can't read.

-Mood disturbances. Very irritable, want to snap at everyone for no reason. Having to hold back tears while ordering a salad?? Yelling at night about the "clowns" who can't diagnose me.

-Vertigo. Very dizzy and feel like I am going to faint.

-Vision problems (tunnel/blurred/seeing spots)

-Numbness/tinging on head/forehead at times

-Face and head feels v heavy, physically tough to lift eyebrows or smile. Eyes are constantly very bloodshot. Idk if that's relevant.

-Short term memory loss

-Light and loud noise sensitivity

Saw Neurologist this week about those issues. Scheduled eeg and a cognitive exam to determine if I have dementia. I am rapidly getting worse, so I'm not sure what my next step should be.

Dr's I've seen: Gps, Rheumatologist, Infectious Disease, Neurologist, GI, Psychiatrist, Dermatologist. I am speaking with an Oncologist that I met via a friend. He has not examined me yet but I told him my story. Thinks a bone marrow biopsy is a good idea. I'm not sure I agree? My GP won't refer me to an oncologist because my workup in his eyes is 'sufficient'

Tests I've had: CT Brain, CT chest/ab/pelvic. Mri brain/neck, CT lower lumbar. Colonoscopy, Endoscopy, Gastric Emptying, Chest xrays, LP, abdominal ultrasound, many many many blood tests.

I've had a pretty extensive workup. I had a positive ANA 1:160 in Nov. Rhumatologist ran a bunch of labs and everything was normal. ANA been run twice since then and it was negative.

Had liver function tests twice spike up randomly, only to be brought back down to normal immediately after (ALT twice went to 75 and 82, but immediately back down to 30s) Blood glucose is at 127 and in Nov it was at 87, but Dr's didn't seem concerned. Had low lymphocyte % of 13-17 through alot of this, but now at 22. Had mild elevation of Eosinophils of .5 for a stretch.

Did a CEA test on my own and it was 3.0. The ref range for nonsmokers was 0-3.7, but I thought this might be concering. My GI yelled at me, but he did insta order the colonoscopy. Other tumor marker tests were normal. Ca19-9, LDH, another one I forget. Inflammatory tests always been normal.

I'm very worried. Everyday my brain is getting worse and I don't know what to do. It seems it could be rapidly progressive dementia? ER will say they can't do anything. My Neurologist is stumped. Oncologist I'm speaking to thinks malignancy could still be possible given symptoms.

Could it be a paraneoplastic syndrome of the CNS?

I have the financial means to get health care anywhere. But I don't know what to do. I thought about flying to Minnesota and waiting standby at Mayo, but I don't think I have the mental capacity for that trip. I cant really function right now. This post took me two hrs and most of it was copy/paste.

I really don't know where to go from here. I just need some direction, I'm very concerned!

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11 Replies

  • Posted

    I feel sorry for you. I have experienced everything you've describe in different episodes or the last 3 years. Not a seizure, but have woken up feeling like a had one once. Mine and go in month to month spells,ten will gradually get better for a while. I also always seem to get alopecia, which is patches of hair going bald, right before everything else comes. No doc ever finds anything except low b12 and extreme low vitamin d. It is So nerve wrecking, you don't even wanna travel and aren't able to enjoy anything. Dementia starts with not being able to remember today's date throughout the day and you'll never have a sense of time(of the day). Also it can't ever get better and worse, it slowly gets bad, and rapidly advances out. Best of luck and I wish I had suggestions, but please keep us posted.
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  • Posted

    Do you think you may have an auto immune illness or a type of vasculitis? 
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  • Posted

    Jeff I know exactly how you feel, I too am going through the same thing. Ana test positive. I've had every test possible. So more researching I'm doing, I'm going to request a Lyme disease test and a hypo parathyroid disease test.. All our symtoms associate with these two and I was positive for herpesvirus 1 which is just the blisters on the lips.. And I'm also checking into that. If you have any feedback please do.
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    • Posted

      Same as yours.. I would like to keep in touch because seems like we are having the same things in our bloodwork. My liver test were also up and down and my potassium was low and sodium and at times other things would be off scale and then maybe back up again. I go back to the specialist on February 22
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    • Posted

      Some other symtoms I have are sometimes my kidneys feel like they are going to blow up and I have burning feeling after going to the bathroom. But don't have a UTI. I have severe twitching with ant crawling feelings also vibrating feelings and the spasms. It goes through my whole body and when it's in my head then it's like electronic shocks in the brain and my head feels swollen. Sensitive to light and my eyes are going bad. I worked out almost everyday and now I have the want to but can't from exhaustion. Wake up tired and tired throughout the day. Insomnia is a problem and irritability is an issue. My elbows are both with tendinitis that is getting more severe. Can't remember things and loose where I am.. Be having a conversation and forget what I was going to say.. Does any of this sound familiar with you?
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    • Posted

      Mary, I don't wanna be rude. But I posted this question to possibly get some help. If you want to discuss your issues I would appreciate if you either posted your own thread or sent me a pm. Thanks
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    • Posted

      Oh sorry Jeff thought I was helping by seeing if you might be looking into some of the same test that I am, and then would let you know my results if you hadn't. Wow
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