Looking for guidance as local physicians have been unhelpful

Posted by blackchapstick @blackchapstick, Feb 17, 2022

Hello everyone, I am new here. I am not here to seek diagnosis and treatment just to clarify what I am experiencing, to possibly pinpoint what it could be and how I can deal with the problem I am experiencing.

So over the last 4 months I have been having concerning symptoms. In which order they have appeared I do not remember exactly anymore.

I had pain in the face and head which was on occasions accompanied by numbness. I believe I have lost some sensation on one side of my face because when I touch the other one, I feel more. There has also been itching. This has been going on for about a month and then went away, but has now resurfaced after 3 months. I have also been experiencing severe pain in my hands for 2 months, to this day it hurts when I wake up and it gets better as the day goes on. For about 2 weeks I had severe pain on the right side of my flank, it felt really swollen. Since that developed, now for almost 4 weeks, I have been having low grade fever that comes and goes (99.5F-102.2F). I believe I am starting to develop knee and elbow pain. 2 times since then I have had an episode of visual hallucinations, multiple times impaired vision and 2-3 times change in mood and behaviour.

Other things that I have are ankle pain, throat ache and headaches, sometimes pain in the toes. Everything comes and goes and at this point I am very hopeless and have become severely depressed.

Any advice is appreciated.

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Is the Mayo Clinic working to develop a breakthrough for Neuropathy with the enzyme
MMP13 ? I’ve read that a science lab in Main has isolated this enzyme as the enzyme attacking the nervous system.
The article indicated it had tuned it’s study over to Mayo Clinic for a way to attack this enzyme.
Appreciate your response.
JIm COzad

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@jcozad

Is the Mayo Clinic working to develop a breakthrough for Neuropathy with the enzyme
MMP13 ? I’ve read that a science lab in Main has isolated this enzyme as the enzyme attacking the nervous system.
The article indicated it had tuned it’s study over to Mayo Clinic for a way to attack this enzyme.
Appreciate your response.
JIm COzad

Jump to this post

Welcome @jcozad, I have not read anything about MMP-13 enzyme as a breakthrough for neuropathy. I did find one March 2020 reference but it doesn't sound like a breakthrough. It seems to be more of a way to prevent cancer treatment induced neuropathy.

Paclitaxel-induced peripheral neuropathy is caused by epidermal ROS and mitochondrial damage through conserved MMP-13 activation: https://pubmed.ncbi.nlm.nih.gov/32132628/

Are you able to share where you saw the article?

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@blackchapstick

Hello, I have considered going to a medical center but I am afraid I am incapable of executing that notion, even before this incident, I've been struggling with mental health for many years and I don't have a supportive circle to help and fight for me. I do not think that I have had covid because I have not experienced any symptoms similar to what the vaccine causes. I believe that some symptoms possibly started some years ago but then they went away (for example ankle pain, burning sensations under skin and black spots appearing in vision) and now have had a sudden and more intense onset. The past months, the symptoms however have been gradual and often changing. An example would be that I have noticed elbow pain developing this week and knee pain last week. Very light. Now after 3 days, I woke up and my left elbow feels like it is burning and as if I had hit it against something. The sensation in the knees however has not picked up yet. My fever seems to have calmed down, and yesterday at night it was difficult to breathe all of the sudden but not anymore. In general, it is very unpredictable other than the visual disturbances, headaches and throat ache. I am 21 years old.

Jump to this post

Sorry for all that you're going through and especially that you appear to be facing it alone, which I can closely identify with, and like yourself have not gotten much help from physicians in years who dismiss most of my symptoms even though there are laboratory and imaging test results that support them. Obviously I cannot diagnose exactly what's going on with you but I can make a few observations that may be of a little help. Please forgive me as I may not always the most eloquent or P.C. with speaking to sensitive issues even though my heart and intentions are good. Your symptom of flank pain with a fever could involve a kidney/bladder/urinary tract infection. Have any lab results or urinalysis or urine cultures shown any indication of such or of impaired renal function or kidney stones? and have you had any injuries to your back/flank area? The black spots in your vision can sometimes be "floaters" that you become more aware of at various times, especially at times of stress or it could be that they may have increased? The black spots could also be somehow related to some of the neurological symptoms you're having, possibly involving an area like the occipital lobe but obviously can be more involved. Have you had a ct with or without contrast of your brain? and/or a mri? One or both of those might also shed some light on "pain in the face and head which was on occasions accompanied by numbness." Have you had any severe headaches or any head injuries? Lastly I hope you might seek some mental health counseling for your depression and/or medication management of it as depression itself can reek havoc on your body and manifest in real physical symptoms. Take care.
For any of the Site Moderators or Experts, please advise me and also forgive me if something I've written here is not in good taste and please give me any suggestions on how to reply more appropriately. I'm new to this type of communication and have been isolated for so many years without any social circle that I'm not confident in my social skills any longer.

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@blackchapstick
I’m sorry you are going through so much
Have you tested for Lyme disease? UTI?
I had a stroke like event last April and took me all year to get back to walking along with many other symptoms- memory, eyes, trouble swallowing. I was told nothing wrong with me. Anxiety. I was persistent and didn’t give up. I was left to figure it out on my own.
Perhaps you could write out all your symptoms and dates to take with you to doctors.
This is what I did. I started taking vitamins and eating very healthy- fruits, vegetables, salads- which I believed helped.
I wish you well on your journey to healing.

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