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Post by putabuttononit on Jan 26, 2024 10:38:51 GMT
UPDATE:
Still no answers. We suspected temporal arteritis and she had a biopsy of the temporal artery. Tests came back negative. They started her on prednisone anyway? We don’t know what to do next. She will see her doctor Monday to discuss. Ear pain continues, extremely fatigued. Headache is better with pain meds. Any more ideas? Seems she’s had every test! This is terrifying. The biopsy was actually surgery and pretty invasive.
She’s 80 and has bad earache, headache, extremely tired, and now her vision is failing. She’s had every test imaginable (CT scan, MRI, EKG, X rays, blood work etc) Been to optometrist for every visual exam. Tomorrow they are doing a lumbar puncture and another MRI (this one of her head/eye). We are desperate for answers so she can be treated! She’s finally gotten some headache meds that take the edge off. She’s miserable. Can’t see to walk or drive etc. She was absolutely fine and healthy until Jan 16.
Any more ideas or thoughts?
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gsquaredmom
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Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jan 26, 2024 11:11:40 GMT
Maybe call in an infectious disease specialist? Look for strep, staph, ordinary things that can turn extraordinary.
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Post by malibou on Jan 26, 2024 11:26:41 GMT
Regarding the blood work, are they doing cultures? Those take several days.
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Post by peasapie on Jan 26, 2024 11:44:11 GMT
The earache — is there an ear infection being treated with antibiotics?
I get terrible earaches due to psoriasis in my inner ear. It can’t be seen or reached and I need to use a liquid eardrop (betamethasone) to help when it acts up. It took two years and many doctors to diagnose. It’s a long shot but I know you are considering all possibilities.
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wellway
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Jun 25, 2014 20:50:09 GMT
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Post by wellway on Jan 26, 2024 11:58:40 GMT
How miserable for her, I hope you have an answer asap.
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Post by piebaker on Jan 26, 2024 12:56:15 GMT
Dental infection? Sending positive thoughts the cause and proper treatment are found soon.
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sweetpeasmom
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Jun 27, 2014 14:04:01 GMT
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Post by sweetpeasmom on Jan 26, 2024 13:08:04 GMT
Migraine?
It is so frustrating when you can't get an answer. This happened to my mom in October and November. In the end, no real diagnosis. The only thing we could come up with was possibly a migraine and I also think one hell of a muscle spasm.
Hope you get answers soon.
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Post by mom on Jan 26, 2024 14:50:43 GMT
I am so sorry and yes -- I will keep her in my prayers.
Have they not done an MRI on her eye/head? She needs one stat if she hasnt. My guess is inflammation or infection.
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Post by mcjunkin on Jan 26, 2024 14:54:51 GMT
Any recent viruses that could have settled somewhere in her brain? One of my kids' swim team mates had some flu type virus, and a few weeks later developed debilitating headaches and a repetitive cough. The virus had moved to a part of her brain, triggering those symptoms.
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samantha25
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Post by samantha25 on Jan 26, 2024 16:22:04 GMT
When I was tested for double vision, in my 30's, doctors tested for brain tumor as that is one of the major causes but didn't tell me this up front as didn't want to alarm me. I just had strabismus.
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River
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Jun 26, 2014 15:26:04 GMT
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Post by River on Jan 26, 2024 17:15:20 GMT
I'm so sorry y'all still haven't gotten answers. I'm praying for her.
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Post by flanz on Jan 26, 2024 17:43:13 GMT
I'm so sorry, I hope she can get relief soon! (((( hugs ))))
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Post by mikklynn on Jan 26, 2024 18:11:26 GMT
No advice, just wishes for your mom to get better!
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Post by Scrapper100 on Jan 26, 2024 20:58:00 GMT
No idea what it could be but I hope they find something snd it’s easily treatable. Hugs to your mom.
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Post by putabuttononit on Jan 27, 2024 20:27:43 GMT
I am so sorry and yes -- I will keep her in my prayers. Have they not done an MRI on her eye/head? She needs one stat if she hasnt. My guess is inflammation or infection. Yesterday they did a lumbar puncture and tested her spinal fluid. They also did an MRI on her head/eyes. Every test came back completely normal. Her vision is even worse today. Her headache continues and her ear pain.
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Post by mom on Jan 27, 2024 23:02:25 GMT
I am so sorry and yes -- I will keep her in my prayers. Have they not done an MRI on her eye/head? She needs one stat if she hasnt. My guess is inflammation or infection. Yesterday they did a lumbar puncture and tested her spinal fluid. They also did an MRI on her head/eyes. Every test came back completely normal. Her vision is even worse today. Her headache continues and her ear pain. Weird! Are you in a larger hospital or it is a rural hospital? Maybe it's time to take her to a teaching hospital where you can get fresh eyes to look at things? Would that be possible?
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Post by malibou on Jan 27, 2024 23:41:50 GMT
Have they done an MRA? It's like an MRI, except it looks at arteries, like the ones in your brain that can develop into aneurysms that could be enlarging, or leaking. There is definitely symptom overlap.
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Post by dewryce on Jan 28, 2024 0:18:04 GMT
I didn’t notice an update for your original thread, did they definitively rule out a UTI?
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Post by Lurkingpea on Jan 28, 2024 2:12:42 GMT
I hope you can get answers. As I said on the original thread you could be describing my mom to a t. My mom has had eye specialists, MRI, cat scans, neurology appointments, ENT appointments. Everyone is baffled.
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snyder
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Post by snyder on Jan 28, 2024 5:42:41 GMT
Praying the doctors can find the root of your mom's troubles and get her back to being healthy pronto! {{hugs}}
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Post by tuva42 on Jan 28, 2024 17:08:46 GMT
My first thought was viral meningitis, but it should show up as a virus on the lumbar puncture. It can be caused by different viruses and can come on after an illness. I had it when I was in my late 20s and it took 3 months for the headache to go away. Viral meningitis is very different from bacterial meningitis in that it is NOT fatal.
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Post by putabuttononit on Jan 28, 2024 22:40:18 GMT
My first thought was viral meningitis, but it should show up as a virus on the lumbar puncture. It can be caused by different viruses and can come on after an illness. I had it when I was in my late 20s and it took 3 months for the headache to go away. Viral meningitis is very different from bacterial meningitis in that it is NOT fatal. They suspected that but ruled it out after the lumbar puncture. Also ruled out UTI and have done every possible test. And she just keeps getting worse.
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Post by gar on Jan 28, 2024 22:46:07 GMT
Migraine? They can go beyond the normal expectations.
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paigepea
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Post by paigepea on Jan 29, 2024 14:25:23 GMT
Autoimmune encephalitis?
I didn’t recognize any of my symptoms as serious until my vision went funny. My GP kept saying long covid or peri menopause. But how to explain vision?
I had 6 normal MRIs including 2 full 2 hour body scans plus 2 normal brain and spinal scans. I had 4 normal CT scans, a normal PET scan and normal blood work. I had a slightly abnormal lumbar puncture.
I was eventuallly positive for an autoimmune encephalitis. They’re rare. Most people test positive in a coma. Everyone has different symptoms because everyone’s brain is affected differently and there are so many unknowns.
im not a dr but maybe would have needed an abnormal puncturel. Otherwise what about a concussion for unknown reasons. Good luck.
Weirdest thing. I haven’t been on the board for many years. This is my first time since a couple of years before covid. And this post shows up on the first page. No one knows about any of my medical stuff here. And then something that hit close to home. Wishing your mom the best.
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paigepea
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Post by paigepea on Jan 29, 2024 14:26:12 GMT
Maybe have the lumbar puncture repeated if your mom’s symptoms don’t improve.
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paigepea
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Post by paigepea on Jan 29, 2024 14:31:01 GMT
Just another thought.
Hearing loss or inner ear problem.
Was she sent to ENT.
That was the first thing I was sent to when my vision started to change. Mine was all normal but the inner ear and hearing loss affects vision and affects us in different ways.
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paigepea
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Post by paigepea on Jan 29, 2024 14:34:11 GMT
When I was tested for double vision, in my 30's, doctors tested for brain tumor as that is one of the major causes but didn't tell me this up front as didn't want to alarm me. I just had strabismus. I have double vision from strabismus diagnosed in my 30s so when my vision started failing from the encephalitis no one cared so much at first. Turns out I have nystagmus from nerve damage. I haven’t driven in almost a year. I’m technically allowed to drive. Just still nervous about it.
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Post by Zee on Jan 29, 2024 19:45:57 GMT
Autoimmune encephalitis? I didn’t recognize any of my symptoms as serious until my vision went funny. My GP kept saying long covid or peri menopause. But how to explain vision? I had 6 normal MRIs including 2 full 2 hour body scans plus 2 normal brain and spinal scans. I had 4 normal CT scans, a normal PET scan and normal blood work. I had a slightly abnormal lumbar puncture. I was eventuallly positive for an autoimmune encephalitis. They’re rare. Most people test positive in a coma. Everyone has different symptoms because everyone’s brain is affected differently and there are so many unknowns. im not a dr but maybe would have needed an abnormal puncturel. Otherwise what about a concussion for unknown reasons. Good luck. Weirdest thing. I haven’t been on the board for many years. This is my first time since a couple of years before covid. And this post shows up on the first page. No one knows about any of my medical stuff here. And then something that hit close to home. Wishing your mom the best. You've been here plenty in the past year, not sure what you mean by not having been here for a couple years since Covid. Is this a shared account?
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Post by putabuttononit on Feb 4, 2024 19:51:41 GMT
I hope you can get answers. As I said on the original thread you could be describing my mom to a t. My mom has had eye specialists, MRI, cat scans, neurology appointments, ENT appointments. Everyone is baffled. Have you gotten any answers yet? My mom just had a very invasive temporal artery biopsy. It came back negative for temporal arteritis. We have zero diagnosis so far. We are so scared because her vision is getting worse.
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Post by Lurkingpea on Feb 4, 2024 20:37:45 GMT
I hope you can get answers. As I said on the original thread you could be describing my mom to a t. My mom has had eye specialists, MRI, cat scans, neurology appointments, ENT appointments. Everyone is baffled. Have you gotten any answers yet? My mom just had a very invasive temporal artery biopsy. It came back negative for temporal arteritis. We have zero diagnosis so far. We are so scared because her vision is getting worse. No. She to the neurologist again this week. Passed every test with flying colors. He ordered blood draw. They apparently took 8 vials. She thinks they must be running *all* the tests. Not sure when she will have results from that. She did see eye specialist. He thinks they can do surgery to tighten eyes which he thinks will correct double vision. Anesthesiologist shortage means it will be a few months before that gets done. No idea why blood pressure is all over the place or why she is so fatigued, headache, dizzy, short of breath and blood pressure is so off. It is extremely frustrating and disheartening not to have answers. Prior to this she was full of energy, volunteered several times a week, did crafts and cooked. Now she can barely walk around the house with a walker. I hope we can both get answers. I am so sorry you are going through the same thing.
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