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 Support Group.

change25 | @change25 | Sep 14, 2021

In reply to @suzetteirons "Change25@change25 am sorry you are going through so much but did your doctor check for lupus..." + (show)

Hello @suzetteirons, I hope you are well.

I suspected that but a dermatologist and rheumatologist have ruled it out mainly due to the negative ANA result. However, the dermatologist couldn't explain my rash and has referred me to another specialist. I still think there's a possibility that it may be lupus or something other than rosacea which is what she diagnosed me with.

A skin biopsy might be a good idea as the results should be more definitive. I do trust and respect most medical professionals but based on the interactions I've had it's somewhat scary to see the differences between one Dr to another ; they are not all equal unfortunately.

Rachel, Volunteer Mentor | @rwinney | Sep 14, 2021

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?

change25 | @change25 | Sep 15, 2021

In reply to @rwinney "Hello @chance25, I'm Rachel. It seems I'm a little late to the conversation, but I'd like..." + (show)

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.

Becky, Volunteer Mentor | @becsbuddy | Sep 15, 2021

In reply to @change25 "It's never too late, thank you for your input Rachel it's greatly appreciated. Definitely worth knowing..." + (show)

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?

change25 | @change25 | Sep 15, 2021

In reply to @becsbuddy "Hey @change25 You’re going to Mayo in London! Great. I know it’s not real soon, but…..." + (show)

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.

Rachel, Volunteer Mentor | @rwinney | Sep 15, 2021

In reply to @change25 "It's never too late, thank you for your input Rachel it's greatly appreciated. Definitely worth knowing..." + (show)

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.

change25 | @change25 | Sep 16, 2021

In reply to @rwinney "Hi @change25. Great! I'm glad you are favoriting the video to refer back to. Yes, I..." + (show)

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.

joannemm34293 | @joannemm30809 | Sep 16, 2021

In reply to @athenalee "Yup, the EMG is painful! I’m glad you’re getting the MRI, I’ve had several. Yes, certainly..." + (show)

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.

suzetteirons | @suzetteirons | Sep 16, 2021

In reply to @rwinney "Hello @chance25, I'm Rachel. It seems I'm a little late to the conversation, but I'd like..." + (show)

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

Rachel, Volunteer Mentor | @rwinney | Sep 16, 2021

In reply to @joannemm30809 "I have persistent and worsening pins, needles, numbness, paralysis in all parts of my body, including..." + (show)

May I ask what medications you take?

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