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

@change25 Well, I’m glad you finally got a diagnosis, even if it has taken months! Now you need to come up with a lot of questions for the gastroenterologist. Here is a link to information about Crohn’s disease
Crohn's disease – Symptoms and causes – Mayo Clinic
When are you scheduled to see the gastroenterologist?

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I should receive a letter within the next few weeks and it'll go from there. This has been ongoing for sometime as I was diagnosed with IBS in 2014 which now turns out to be IBD. At least I've finally got a diagnosis but I'm sure there's more to come as there's multiple ongoing symptoms that aren't related to IBD.

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Have you seen a lymes specialist?

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@marm7756

Have you seen a lymes specialist?

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Hello @marm7756 and welcome to Mayo Clinic Connect. It looks like you may interested in responding to a particular member to ask them if they've seen a lymes specialist. In order for a member to be notified, you may either use the "REPLY" button below their post and/or @mention them by using their handle (i.e. yours is @marm7756).

Do you have experience with lymes?

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@becsbuddy

@change25 Well, I’m glad you finally got a diagnosis, even if it has taken months! Now you need to come up with a lot of questions for the gastroenterologist. Here is a link to information about Crohn’s disease
Crohn's disease – Symptoms and causes – Mayo Clinic
When are you scheduled to see the gastroenterologist?

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@change25 here is the correct link for info on Crohn’s disease. You know, you’ve come such a long way since you first posted in April! You’ve gone from being sick to a young man who’s in charge of his health!

I https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
Do you think you’ll be able to return to school or work or have you been going all this time?

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@becsbuddy

@change25 here is the correct link for info on Crohn’s disease. You know, you’ve come such a long way since you first posted in April! You’ve gone from being sick to a young man who’s in charge of his health!

I https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
Do you think you’ll be able to return to school or work or have you been going all this time?

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Thank you Becky, you're so helpful.

No. I suspended my studies at the time as I was unable to meet the demands of the course. The University has been extremely accommodating and have said that I can return in either the January or September cycle. I'm aiming for January I just need to wait for my MRI results and I'll go from there.

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@change25

That's the MRI done, wasn't too bad had an issue with my throat where one of the scans needed to be repeated due to too much head movement. Expected it to be more comfortable than what it was, but all in all it was an okay experience.

I've finally had my first official diagnosis of crohn's disease. I've got pretty significant inflammation in my lower and upper intestine and it's also worked up my entire GI tract and has impacted my eyes, nose and throat. I'm just waiting to see a gastroenterologist to see he what needs to be done to control it. The disease itself has been active for 14 years so not good.

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@chance25 I’m wandering how you were diagnosed with Chrines disease? What tests/scans? I think I have those symptoms.

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@jwillits8

@chance25 I’m wandering how you were diagnosed with Chrines disease? What tests/scans? I think I have those symptoms.

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Hello @jwillits8, initially I had a stool test to rule out IBS as that doesn't cause inflammation whereas IBD does, I think this was called a faecal calprotectin test. This showed that I did indeed have IBD. However, this test won't indicate which form of the disease you have so I then had a colonoscopy and not too long after I had a phone call from my Dr. Hope this helps, if you do have it it's important to get it sorted asap as while it can't be cured it can definitely be controlled.

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Change25@change25 am sorry you are going through so much but did your doctor check for lupus because that rash you have on your face and the dryness, all your symptoms are signs of lupus. You can do a research on lupus symptoms and you will get an idea of the signs and symptoms of lupus. I hope you get some help soon.

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@suzetteirons

Change25@change25 am sorry you are going through so much but did your doctor check for lupus because that rash you have on your face and the dryness, all your symptoms are signs of lupus. You can do a research on lupus symptoms and you will get an idea of the signs and symptoms of lupus. I hope you get some help soon.

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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.

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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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@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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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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@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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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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