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.

@becsbuddy

Hey @change25 You’re going to Mayo in London! Great. I know it’s not real soon, but… i thought you might like this discussion on meeting with new specialists.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
When and what is your next appointment?

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Wonderful, very useful reading material – thank you Becky.

I've nothing set in stone yet, I'm just waiting on my MRI report and a follow up with the gastroenterologist.

Once that's finalised I'll be heading down, timescale it's looking like it'll be around mid December. I've got all the info needed and a link straight through to book with the consultant.

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@change25

It's never too late, thank you for your input Rachel it's greatly appreciated.

Definitely worth knowing as I can relate to many of the symptoms presented. I'll favourite the video so I can refer back to it if needed.

Were you given an effective treatment plan once you were diagnosed?

Also, I'm still looking to make a trip down to mayo clinic in London. They advised me to wait until I'd more diagnostic tests so I'll be armed with much more information now.

All the best.

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Hi @change25. Great! I'm glad you are favoriting the video to refer back to.

Yes, I was given an effective treatment plan when I attended Mayo Clinic's Pain Rehabilitation Center.

Good luck with getting to Mayo in London. Keep us posted please.

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@rwinney

Hi @change25. Great! I'm glad you are favoriting the video to refer back to.

Yes, I was given an effective treatment plan when I attended Mayo Clinic's Pain Rehabilitation Center.

Good luck with getting to Mayo in London. Keep us posted please.

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That's great news, I'm glad you managed to get a diagnosis.

Absolutely, even if I do get a diagnosis from my current healthcare providers I'll still head down for a second opinion.

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@athenalee

Yup, the EMG is painful! I’m glad you’re getting the MRI, I’ve had several. Yes, certainly uncomfortable, but as Becky says, no pain. The brain one does set off the nerves though. Just remember to breathe well when the tech tells you to! But, amazing what they can diagnose and rule out. Sending positive thoughts for a diagnosis and remedy!

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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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@rwinney

Hello @chance25, I'm Rachel. It seems I'm a little late to the conversation, but I'd like to welcome you, and commend you on your perseverance and maturity in handling all you are going through. Thank you for joining the Mayo Connect community. I see you have a ton of support, which makes me happy, as you navigate your confusing health obstacles.

The original list of symptoms you provided in this thread looked very familiar to me. I also had a plethora of symptoms and saw a plethora of "ologists" to rule out diagnoses. One thing lead to another, and another, and another. In my case, I had some pretty solid diagnoses along the way…migraine, corneal disease, small fiber neuropathy, b12 deficiency, occipital neuralgia, chilblains. Some were legit diagnoses but others were shots in the dark for not knowing or understanding what else could be wrong with me. I had mitigating circumstances which doctors were unable to grasp outside of their specialty lane. Eventually, by process of elimination, it was discovered I had this "umbrella" term called Central Sensitization Syndrome (CSS) hovering over my other diagnoses. This is when you have an upregulated central nervous system and peripheral sensory system. It can be responsible for a multitude symptoms.

I've attached a presentation from the Mayo Clinic's Dr. Sletten on CSS. Not to confuse you further, but please take a look and keep the info in your back pocket as you navigate your current health challenges.
https://youtu.be/8defN4iIbho
My wish for you is that you remain positive and hopeful in your journey. I'll be watching your progress along the way. Please let me know if I can answer any questions or help you. I'd love to know if the CSS video speaks to your current situation in any way. Will you let me know your thoughts when you can?

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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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@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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May I ask what medications you take?

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@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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@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?

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@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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@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.

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@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?

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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.

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@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

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