At a loss, multiple consultations still no answer...any idea?

Posted by change25 @change25, Apr 24, 2021

In the last year my health has rapidly declined, I've recently had a blood test which was normal except for my folate which was low. My Dr conducted an examination, but was unable to properly diagnose me.

Any idea what it may be from these symptoms:
*Pulsating headache, difficulty focusing.
*Weak eyes where they feel droopy along with being dry and painful.
*Dry and sore mouth.
*cheek and jaw pain.
*Changes in pigmentation, face appears gaunt.
*Back pain.
*Odd tingling sensation present in hands and feet.
*cold hands along with an odd rash present on hands and knuckles, which is a deep purple.

I know something isn't right, yet I'm unable to obtain the answers I need. I've added some images before the changes occurred to now so that you can get a context into what's occurred. Any insight will be greatly appreciated, many thanks.

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Profile picture for Rachel, Volunteer Mentor @rwinney

May I ask what medications you take?

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Over the last 25 years I have taken metoprolol for my irregular heartbeat. I'm not too sure if long-term use of metoprolol can cause persistent neurological problems such as what I've described. I'm going to go back to my cardiologist, who has a bedside manner of a rock, and ask him if my metaprolol could be the problem.

I also had two and a half years ago a loop recorder inserted into the left breast that I have a constant recording of my heart and I was wondering if maybe the loop recorder could be adversely affecting my health because it is some kind of a recording device.

My husband's employer, Publix, only provides one medical insurance company to choose from and that's Blue Cross Blue shield and at this point I believe they know we are at their mercy and they can deny deny deny whatever they want whatever test and we have no choice and nowhere else to pick up and take our money to during open enrollment.

Any advice is greatly appreciated. I have been suffering for 1.7 years now and have had so many tests done except for an MRI of my spine. The MRI of my neck two and a half years ago showed cervical stenosis and myelopathy and calcification of the cervical vertebraes and narrowing of the spinal fluid.

I'm not too sure if all my problems are autonomic nervous system malfunction because I've been misdiagnosed several times, one heart doctor says I have dysautonomia and the other heart doctor says I do not. The neurologist says I have benign fasciculation syndrome because I do have muscle twitching throughout my entire body for one year now but all tests rule out ALS etc. And of course my primary care and a neurologist thinks I have anxiety problems. I know there's something else brewing that's way beyond anxiety.

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Profile picture for suzetteirons @suzetteirons

Rachel my name is Suzette, i was watching the video and I feel like this doctor was talking to me and what I am going through. Thanks for sharing

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Hello @suzetteirons, welcome to Connect. I'm so glad you joined the conversation and am thrilled Dr. Sletten's presentation spoke to you. Light bulb moment, right?!

Do you care to share your health journey and how you currently manage your symptoms? Have you considered attending Mayo Clinic's Pain Rehab Center?

REPLY
Profile picture for joannemm34293 @joannemm30809

Over the last 25 years I have taken metoprolol for my irregular heartbeat. I'm not too sure if long-term use of metoprolol can cause persistent neurological problems such as what I've described. I'm going to go back to my cardiologist, who has a bedside manner of a rock, and ask him if my metaprolol could be the problem.

I also had two and a half years ago a loop recorder inserted into the left breast that I have a constant recording of my heart and I was wondering if maybe the loop recorder could be adversely affecting my health because it is some kind of a recording device.

My husband's employer, Publix, only provides one medical insurance company to choose from and that's Blue Cross Blue shield and at this point I believe they know we are at their mercy and they can deny deny deny whatever they want whatever test and we have no choice and nowhere else to pick up and take our money to during open enrollment.

Any advice is greatly appreciated. I have been suffering for 1.7 years now and have had so many tests done except for an MRI of my spine. The MRI of my neck two and a half years ago showed cervical stenosis and myelopathy and calcification of the cervical vertebraes and narrowing of the spinal fluid.

I'm not too sure if all my problems are autonomic nervous system malfunction because I've been misdiagnosed several times, one heart doctor says I have dysautonomia and the other heart doctor says I do not. The neurologist says I have benign fasciculation syndrome because I do have muscle twitching throughout my entire body for one year now but all tests rule out ALS etc. And of course my primary care and a neurologist thinks I have anxiety problems. I know there's something else brewing that's way beyond anxiety.

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I understand, but what current medications are you taking? Pain, anxiety, nerve medications...any of that?

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Profile picture for Rachel, Volunteer Mentor @rwinney

I understand, but what current medications are you taking? Pain, anxiety, nerve medications...any of that?

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The only medication I'm taking is metoprolol and it's 25 mg in the morning and 25 mg in the evening.

I'm very hesitant on getting any pharmaceutical antidepressants or anxiety. I need to find out why I have all these persistent progressively getting worse neurological symptoms that have no rhyme no reason and have no trigger for them just occurring out of the blue everyday.

The doctor never prescribed any nerve medication for everything including my muscle twitches throughout my body He just said it's benign fasciculation syndrome and I need to go get a hobby or go do yoga or go learn meditation etc but he said it's benign and I just need to learn to live with all the muscle twitching so I have no medicine for that either.

REPLY
Profile picture for Rachel, Volunteer Mentor @rwinney

Hello @suzetteirons, welcome to Connect. I'm so glad you joined the conversation and am thrilled Dr. Sletten's presentation spoke to you. Light bulb moment, right?!

Do you care to share your health journey and how you currently manage your symptoms? Have you considered attending Mayo Clinic's Pain Rehab Center?

Jump to this post

Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.

REPLY
Profile picture for joannemm34293 @joannemm30809

The only medication I'm taking is metoprolol and it's 25 mg in the morning and 25 mg in the evening.

I'm very hesitant on getting any pharmaceutical antidepressants or anxiety. I need to find out why I have all these persistent progressively getting worse neurological symptoms that have no rhyme no reason and have no trigger for them just occurring out of the blue everyday.

The doctor never prescribed any nerve medication for everything including my muscle twitches throughout my body He just said it's benign fasciculation syndrome and I need to go get a hobby or go do yoga or go learn meditation etc but he said it's benign and I just need to learn to live with all the muscle twitching so I have no medicine for that either.

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i'm very relieved to hear your doctors haven't been pushing meds because that in itself can be the cause of many "extras". And kudos to you for not wanting to be on them.. Your doctor's holistic approach is a smart one although having been there, I understand completely how sucky that feels when you have discomforts and symptoms and just want help.

As hard as this is to hear...once you navigate testing and results...it may come down to chronic conditions and understanding how to gain acceptance and learn how to manage for a better path forward. Central Sensitization Syndrome really seems to line up with all you describe.

The confusion, anxiety and frustration is actually fueling your fire. What do you do to calm yourself?

In pain rehab, I learned the 5 P's:

Pause
Process
Perspective
Patience
Plan

REPLY
Profile picture for suzetteirons @suzetteirons

Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.

Jump to this post

100% true, you came to right place. I'm sorry to hear you experience pain through your body. I do too, and it wasn't until I Dr. hopped, had extensive testing, took multiple drugs, and drove myself a little crazy that I realized what I was living with were chronic conditions. This in turn messed with my psychological state and brought depression, anxiety, etc... which entices symptoms and round and round we go. All of this became overwhelming until I learned how to manage, accept and plan my course of action. Putting yourself in control instead of Drs is empowering.

How are you currently managing inflammation? Are you eating a healthy diet to help reduce inflammation? How are you managing your mental state? Are you giving yourself grace?

REPLY
Profile picture for Rachel, Volunteer Mentor @rwinney

i'm very relieved to hear your doctors haven't been pushing meds because that in itself can be the cause of many "extras". And kudos to you for not wanting to be on them.. Your doctor's holistic approach is a smart one although having been there, I understand completely how sucky that feels when you have discomforts and symptoms and just want help.

As hard as this is to hear...once you navigate testing and results...it may come down to chronic conditions and understanding how to gain acceptance and learn how to manage for a better path forward. Central Sensitization Syndrome really seems to line up with all you describe.

The confusion, anxiety and frustration is actually fueling your fire. What do you do to calm yourself?

In pain rehab, I learned the 5 P's:

Pause
Process
Perspective
Patience
Plan

Jump to this post

Hello! This really is an amazing community for people who have other than the most routine symptoms!
For a long time, I, too have been going the route of being told "you're fine, you have anxiety, you need to do X, blah blah blah". This while knowing something was wrong. I, too, have an implanted loop recorder. And I have begun to feel kind of crazy when I see this list!
Turned out to be several things, long undiagnosed celiac disease, pernicious anemia, UCTD, AFib, labile hypertension, neuropathy, cutaneous Lupus, on and on, most recently Pure vasovagal response as the result of a Tilt Table Test.
That is a dysautonomia!
There's a drug to raise blood pressure! I am not starting it unless things get way worse! Too many pills already! The side effects of one creates the" need" for another ad nauseam.
(Note: I am investigating Hawthorn berry for AFib, my sister told me about it.)
And the rest of it? The symptoms?
For now, I am going to live with it. I am blessed not to have severe problems, just a lot of them, and, at the moment, grateful to have a diagnosis of dysautonomia explaining SO much?
I wish you all the best health-wise and that you find peace!

REPLY
Profile picture for Rachel, Volunteer Mentor @rwinney

100% true, you came to right place. I'm sorry to hear you experience pain through your body. I do too, and it wasn't until I Dr. hopped, had extensive testing, took multiple drugs, and drove myself a little crazy that I realized what I was living with were chronic conditions. This in turn messed with my psychological state and brought depression, anxiety, etc... which entices symptoms and round and round we go. All of this became overwhelming until I learned how to manage, accept and plan my course of action. Putting yourself in control instead of Drs is empowering.

How are you currently managing inflammation? Are you eating a healthy diet to help reduce inflammation? How are you managing your mental state? Are you giving yourself grace?

Jump to this post

When am in pain am so depressed and fed of of all the pains, I try to change my diet but it’s a struggle when u love the things that are bad for you like sweets but am making progress with changing the way I eat what I eat and drink. I take pain killers when the pain is getting too much for me but I try to bear it most times because I don’t want to get too dependent on pain killers.

REPLY
Profile picture for suzetteirons @suzetteirons

When am in pain am so depressed and fed of of all the pains, I try to change my diet but it’s a struggle when u love the things that are bad for you like sweets but am making progress with changing the way I eat what I eat and drink. I take pain killers when the pain is getting too much for me but I try to bear it most times because I don’t want to get too dependent on pain killers.

Jump to this post

Will you consider applying to Mayo's Pain Rehab Center?
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
You can apply through this link.

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