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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Becky, Volunteer Mentor | @becsbuddy | May 5, 2021

In reply to @lacy2 "...lots of great ideas, sort of reminds me of my former life.... the happiness expressed etc." + (show)

@lacy2 tell me about your former life! Where did you live? Did you always live in the same place? I’d love to hear about it!

Valerie | @lacy2 | May 5, 2021

In reply to @becsbuddy "@lacy2 tell me about your former life! Where did you live? Did you always live in..." + (show)

..thanks for asking and your interest but would take a long time and lots of space ... its just that before I got my plethora of various life altering illnesses I was a busy bee, enjoyed my home, cooking, gardening, computer, driving, shopping, family and had lots of energy; reduced to fatigue and not feeling well daily and spend most of my time in my bedroom... I do like to get out my photos though and see the ones where enjoyable times, being with family, holidays, garden etc.... partly the ageing process, losing family and friends, partly illness physical and mental...am sure many have similar thoughts and I admire and feel happy for those who are overcoming their situations and staying positive 🌺 J.

change25 | @change25 | May 6, 2021

Update: As expected my bloods haven't revealed anything. Unbelievably the Dr stated that they're the best results they've seen for awhile... I've got a call scheduled for this Friday to discuss potential options. Any idea where I should go from here?

mtblack | @mtblack | May 6, 2021

In reply to @lacy2 "..thanks for asking and your interest but would take a long time and lots of space..." + (show)

Hang in there @lacy2 ...I just joined this group and only read a little about your situation. I am hoping for the best for you. Sending good thoughts your way.

Valerie | @lacy2 | May 6, 2021

In reply to @mtblack "Hang in there @lacy2 ...I just joined this group and only read a little about your..." + (show)

thanks just having flareup right now of everything... supposed to go for blood tests thisam if i do may slip into emerge but so far no help no fam dr ...listenign to you tube tapes deep breathing right now...sorry guys

John, Volunteer Mentor | @johnbishop | May 6, 2021

In reply to @change25 "Update: As expected my bloods haven't revealed anything. Unbelievably the Dr stated that they're the best..." + (show)

@change25, I'm sorry to hear the blood tests didn't reveal anything to help uncover what is going on and causing your symptoms. If it were me I would do a little preparation for your call and discussion with your doctor or care team. There are some really good tips here - https://patientrevolution.org/visit-tools

change25 | @change25 | May 6, 2021

In reply to @johnbishop "@change25, I'm sorry to hear the blood tests didn't reveal anything to help uncover what is..." + (show)

Thanks John, I've managed to condense my symptoms to the three key issues bothering me. I've put a short script together so that I don't forget anything. I'll try to push him in the direction of referring me to a rhumatologist.

ess77 - Elizabeth | @ess77 | May 6, 2021

In reply to @change25 "Thanks John, I've managed to condense my symptoms to the three key issues bothering me. I've..." + (show)

Well, now you have additional information to help in your investigation. That's a good thing.
Isn't John wonderful???? I love his dedication and research and attitude...I just think he's great and has helped so many folks on these sites. What a good link...Sounds like you've done your work and are ready for the visit. If he hears you, you'll be referred to a rheumatologist. I hope so, my friend.
Let us know. Pulling for you for the answers!
Blessings, elizabeth

change25 | @change25 | May 6, 2021

In reply to @ess77 "Well, now you have additional information to help in your investigation. That's a good thing. Isn't..." + (show)

He's excellent, as are so many others on this platform. I had a feeling that the bloods wouldn't yield anything, I suppose the positive is that it'll have eliminated many conditions. Yes, I just need to be careful how I approach it - I need to push the Dr in the direction of what I believe should happen, while making him believe that he's making the call.

Becky, Volunteer Mentor | @becsbuddy | May 6, 2021

In reply to @change25 "He's excellent, as are so many others on this platform. I had a feeling that the..." + (show)

@change25 I have seen your confidence grow so much over these past weeks! You are really doing a great job.
Is anyone going with you to your next appointment? Someone you know and trust and who sees what is going on with you. Someone who can take good notes.
Are you keeping a journal on all that is happening and doctor visits, etc.?