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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I forgot to add that I also have 2-3 months problems with my memory and severe brain fog. There might have been also some other things that I have missed, it is just so much going on.

REPLY

I am so sorry that you are experiencing all of these symptoms. Since I am not qualified to give you any opinion on the above, I wonder if you have been to Mayo Clinic. The doctors are committed to finding a true diagnosis when multiple symptoms are present. My husband had several puzzling symptoms and we made appointments in our hometown amd nearby cities with many doctors in different specialties. All had differing opinions, and yet my sweet hubby was progressively getting worse. Many medications were prescribed and one – an anti psychotic called Vraylar caused irreversible lost ground. Finally someone mentioned Mayo Clinic and the doctors (neurologist, psychologists, hematologists, radiologists, etc. ) all ran a huge battery of tests and eventually we were told that he is probable for LBD. While it was heart breaking, at least we had a path to walk and time to make new memories. – and most of all- the appropriate medications.
I hope you can get to Mayo Clinic very soon, so you can go forward and manage your symptoms. God Bless!
J.C.

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Welcome, @blackchapstick. I can imagine that you're at the end of your rope with no answers yet. I agree with @teacher502 that you might consider going to a large medical center of excellence or teaching hospital, like Mayo Clinic.

May I ask, have you had COVID? Did these symptoms start gradually or suddenly? How old are you?

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@colleenyoung

Welcome, @blackchapstick. I can imagine that you're at the end of your rope with no answers yet. I agree with @teacher502 that you might consider going to a large medical center of excellence or teaching hospital, like Mayo Clinic.

May I ask, have you had COVID? Did these symptoms start gradually or suddenly? How old are you?

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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.

REPLY
@teacher502

I am so sorry that you are experiencing all of these symptoms. Since I am not qualified to give you any opinion on the above, I wonder if you have been to Mayo Clinic. The doctors are committed to finding a true diagnosis when multiple symptoms are present. My husband had several puzzling symptoms and we made appointments in our hometown amd nearby cities with many doctors in different specialties. All had differing opinions, and yet my sweet hubby was progressively getting worse. Many medications were prescribed and one – an anti psychotic called Vraylar caused irreversible lost ground. Finally someone mentioned Mayo Clinic and the doctors (neurologist, psychologists, hematologists, radiologists, etc. ) all ran a huge battery of tests and eventually we were told that he is probable for LBD. While it was heart breaking, at least we had a path to walk and time to make new memories. – and most of all- the appropriate medications.
I hope you can get to Mayo Clinic very soon, so you can go forward and manage your symptoms. God Bless!
J.C.

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Thank you for your input, I hope you are doing better.

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@blackchapstick

I forgot to add that I also have 2-3 months problems with my memory and severe brain fog. There might have been also some other things that I have missed, it is just so much going on.

Jump to this post

What types of doctors are you seeing? Did you get sick, like flu etc.. prior to anyone of these symptoms? I am asking because you are describing some of the same symptoms I have also had. I am going to a post Covid Clinic as I had a test run to see if I foresure had gotten Covid, as I hadn't tested for it while I was sick. My blood test showed positive for the antibodies, telling me I had. You may want to get a Covid antibody test run and start there. Just an idea

REPLY
@mamafluh

What types of doctors are you seeing? Did you get sick, like flu etc.. prior to anyone of these symptoms? I am asking because you are describing some of the same symptoms I have also had. I am going to a post Covid Clinic as I had a test run to see if I foresure had gotten Covid, as I hadn't tested for it while I was sick. My blood test showed positive for the antibodies, telling me I had. You may want to get a Covid antibody test run and start there. Just an idea

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I am new to connect and I have been battling most of these problems for about 10 yrs. I am a Vet and all my Medical treatments are at a local VA hospital. I do not have any of these problems to a debilitating state but I have feeling that is hard to explain to a Dr. I have a total flush feeling in my head mostly on the left side. It feels as if all the emotions I have are triggered together. Any else experience this?

REPLY
@mamafluh

What types of doctors are you seeing? Did you get sick, like flu etc.. prior to anyone of these symptoms? I am asking because you are describing some of the same symptoms I have also had. I am going to a post Covid Clinic as I had a test run to see if I foresure had gotten Covid, as I hadn't tested for it while I was sick. My blood test showed positive for the antibodies, telling me I had. You may want to get a Covid antibody test run and start there. Just an idea

Jump to this post

I've been to three primary care physicians and a neurologist. Two just gave me Ibuprofen, other took a blood test. Today I've been to the ER, there I have tested negative for Covid. They had reason to believe it could be an autoimmune disorder so they did a bunch of test but they came back negative and gave me a letter to take to my physician for further investigation but I doubt I will get help there. I also got some Prednisolone now to try for 3 days to see if that helps.

REPLY
@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

Have you ever been bit by a tick? Do you know if they tested you for Lyme disease or other bacterial infections from tick bites? Lyme disease symptoms can come and go and will skip around to different joints.

REPLY
@denisept

Have you ever been bit by a tick? Do you know if they tested you for Lyme disease or other bacterial infections from tick bites? Lyme disease symptoms can come and go and will skip around to different joints.

Jump to this post

That is a good question, I have considered taking a look if it is Lyme disease. Do you think it is a good idea to go to the doctor's office with a list of things that I might suspect it could be? I feel like the inflammation, pain and neuropsychiatric symptoms could be literally anything to be honest when I take into consideration all the possible causes I can think of and find in databases. To expand, I have never been bit by a tick, I spend very little time in the woods or fields and I have no pets I spend time with. The prednisolone I got now is actually doing wonders although it is not sufficient. Improved mental clarity, less pain, I can finally take a deep breath after many years. This however I just got for a few days to test out, I suppose. It also causes new pain at times so I don't think this would be sustainable.

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