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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@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
@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
@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
@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.

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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.

REPLY
@yellowdoggirl

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!

Jump to this post

@yellowdoggirl Hi! I'm so glad you enjoy the Connect community. We're here to help, support, and encourage. Thank you for sharing your journey.

I'm sorry for your health struggles but happy you have a diagnosis and are grateful.

Wishing you a positive path forward of managing your symptoms, and making the most of what you do have.

REPLY
@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

I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.

REPLY
@joannemm30809

I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.

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This is great news! I'll keep my fingers crossed. Definitely Dr. referrals to Mayo Clinic are helpful. Keep us posted.

REPLY
@rwinney

This is great news! I'll keep my fingers crossed. Definitely Dr. referrals to Mayo Clinic are helpful. Keep us posted.

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I am back in bed so sick. Feel like my body is shutting down with possible autonomic nervous system failure. BCBS is causing my downfall.

REPLY
@joannemm30809

I have persistent and worsening pins, needles, numbness, paralysis in all parts of my body, including my face and it's worsened over past 1.5 years.

Had MRI on neck two years ago and it showed cervical stenosis and calcification and narrowing of spinal fluid canals on both sides of vertebrae with myelopathy.

Since then my feet, calves, hands, arms, mid back, belly and lower face go numb. Pins, needles. Etc

My insurance company BCBS has denied three times for MRI of spine or brain. They state I need to go through PT first on my back before MRI is approved.

That seems backwards to me. Why would you to PT on the spine when you have no x-rays to show possible spinal cord impingement etc??

I am at a loss. Could Mylopathy of my neck with stenosis and narrowing of spinal fluid in neck cause all these symptoms etc?

All specialist are at a loss. I've had tons of tests and blood work but never MRI on back.

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I’m very sorry that you’re battling both your health and your insurance. Our country’s medical insurance, or often lack there of, is woefully unjust and unequal. I had fabulous insurance when I was employed, but lost it when I had to resign as I got too ill to work. Have been only doing contract work since and now on Medicaid, which many doctors do not accept and you don’t get approved for a lot tests and procedures.

As a patient, I do not have much advice to offer for your health issues, other than to try to remain positive and keep pushing your providers for answers. Doctors can often switch up orders for tests so that insurance providers will approve them So, I’d recommend you keep pursuing the MRI. An MRI is often key to ruling out what is or isn’t the cause of one’s neuropathy.

Have you had the gamut of blood labs to also try to diagnose what you may have? Also, have you sent in an appeal to BCBS? I did that twice, wrote up all my issues, why I needed the procedure, stated that my doctor says I need the procedure, I couldn’t afford it, etc., and I won.

I hope you find answers soon.

REPLY
@athenalee

I’m very sorry that you’re battling both your health and your insurance. Our country’s medical insurance, or often lack there of, is woefully unjust and unequal. I had fabulous insurance when I was employed, but lost it when I had to resign as I got too ill to work. Have been only doing contract work since and now on Medicaid, which many doctors do not accept and you don’t get approved for a lot tests and procedures.

As a patient, I do not have much advice to offer for your health issues, other than to try to remain positive and keep pushing your providers for answers. Doctors can often switch up orders for tests so that insurance providers will approve them So, I’d recommend you keep pursuing the MRI. An MRI is often key to ruling out what is or isn’t the cause of one’s neuropathy.

Have you had the gamut of blood labs to also try to diagnose what you may have? Also, have you sent in an appeal to BCBS? I did that twice, wrote up all my issues, why I needed the procedure, stated that my doctor says I need the procedure, I couldn’t afford it, etc., and I won.

I hope you find answers soon.

Jump to this post

I have had just about every bit of blood test done and many other tests and x-rays yet all negative except two years ago a MRI of my neck showed cervical stenosis with herniation and myelopathy as well as narrowing of spinal fluid on both sides of vertebrates in heck.

Good news just received Tonight!! My primary care doctor appealed to BCBS and won for MRIs on spine and neck. This was after three denials of these MRIs. My doctor is going to refer me to Mayo so hopefully they are willing to help me get a diagnosis.

I'm starting to believe it is autonomic nervous system disease. Horrible. These symptoms are relentless and scary.

REPLY
@joannemm30809

I have had just about every bit of blood test done and many other tests and x-rays yet all negative except two years ago a MRI of my neck showed cervical stenosis with herniation and myelopathy as well as narrowing of spinal fluid on both sides of vertebrates in heck.

Good news just received Tonight!! My primary care doctor appealed to BCBS and won for MRIs on spine and neck. This was after three denials of these MRIs. My doctor is going to refer me to Mayo so hopefully they are willing to help me get a diagnosis.

I'm starting to believe it is autonomic nervous system disease. Horrible. These symptoms are relentless and scary.

Jump to this post

I’m glad you’re getting the MRIs, they offer hope in finding suitable treatment. Please let us know what your providers find.

REPLY
@athenalee

I’m glad you’re getting the MRIs, they offer hope in finding suitable treatment. Please let us know what your providers find.

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I will. It's been two years of suffering with no accurate diagnosis or treatment plan. I hope these MRIs or Mayo bring me some answers and some hope for me to live a somewhat normal life.

REPLY
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