1. < Autoimmune Diseases

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 3, 2021
In reply to @lacy2 "Thank you for asking @becsbuddy ... morning wasnt that pleasant but settling down now and going..." + (show)
@lacy2

Thank you for asking @becsbuddy ... morning wasnt that pleasant but settling down now and going to have a nap.... I also spoke to telehealth GP over phone and she is looking into medication - have to check with Ophthalmologist first, tomorrow. I honestly don't really want to go back on the pill-train again, but may be the only thing that will pull my bucket out of the well. Yes some buds on trees.. would be nice if I can get outside this Summer.... I love forsythia but left our bush behind when we moved. Take care, J. 🌾

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I'm glad to hear that you had access to your GP sooner than the end of the month. Remember that taking medication is not a sign of weakness. Talk to you doctor about the concerns you have with taking medication and how, together, you may figure out a way to get the drug and dosage that is right for you. You shouldn't feel like you're on a pill-train or slave to them. Just enough to be your assistant to see glass half full instead of empty. Right?

REPLY
1 reply
Valerie | @lacy2 | May 3, 2021
In reply to @colleenyoung "I'm glad to hear that you had access to your GP sooner than the end of..." + (show)
@colleenyoung

I'm glad to hear that you had access to your GP sooner than the end of the month. Remember that taking medication is not a sign of weakness. Talk to you doctor about the concerns you have with taking medication and how, together, you may figure out a way to get the drug and dosage that is right for you. You shouldn't feel like you're on a pill-train or slave to them. Just enough to be your assistant to see glass half full instead of empty. Right?

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Yes... well today was family doctor on line thru phone in video clinic, who I see at end of month is Psychologist but she has me on cancellation list. Lucy to even speak with someone as we are in lockdown, northern Ontario. Thanks again, J.

REPLY
Valerie | @lacy2 | May 3, 2021

"Lucky" to be able to speak with someone. Lucy is my dog must have her on my mind as she is off today, has been standing up since 6.30a.m. Vet cant find anything wrong: Mayo for Pets?

REPLY
migizii | @migizii | May 3, 2021
In reply to @lee1959 "Thank you so much if anything comes out of this I hope I can help just..." + (show)
@lee1959

Thank you so much if anything comes out of this I hope I can help just one other person I’ve been fighting for myself my whole life I’m not gonna give up but I do admit that it’s getting harder and harder if you need help with an expression or something to say to somebody I’m your girl, I’m so logical and can explain myself so good sometimes It scares me. A lot of my doctors have done what I’ve told them to do. Tell me that’s not scary

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lee1959.....thx for letting us know. I am assertive and good at standing up for myself, but occasionally lose the diplomacy factor. ❤️❤️❤️

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 3, 2021
In reply to @lacy2 "@becsbuddy and everyone: thank you and I hesitated to write that .. not very encouraging or..." + (show)
@lacy2

@becsbuddy and everyone: thank you and I hesitated to write that .. not very encouraging or positive but the story is long and many winding roads .. no drugs or alcohol ... illness and depression and now older I don't seem to have the strength to overcome... everyone is helping me whether they realize it or not... but this has been a very bad few years and never before staying in my bedroom, ever.... and I can't seem to get over it .... I wont write more because could go on and on but today is extremely dark, as many days recently.... and family tired of my not pursuing anti depresssants, but am on Rivotril, but have had issues in the past. I would pay someone to help me.... I have appt. end of May with psychotherapist so maybe can hold on til then... hugs through my tears, June

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@lacy2 I am glad to see that you are reaching out to your friends on Mayo Connect. Every little bit helps. Remember, every journey begins with a single step!
May I ask why you’ve resisted using antidepressants? When I started taking them, I was sure that it was a sign of weakness, but have since learned that they are really a lifesaver. I would never have been able to deal with my autoimmune disease if I didn’t have the support of antidepressants.
Do you think you might reconsider?

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1 reply
Valerie | @lacy2 | May 3, 2021
In reply to @becsbuddy "@lacy2 I am glad to see that you are reaching out to your friends on Mayo..." + (show)
@becsbuddy

@lacy2 I am glad to see that you are reaching out to your friends on Mayo Connect. Every little bit helps. Remember, every journey begins with a single step!
May I ask why you’ve resisted using antidepressants? When I started taking them, I was sure that it was a sign of weakness, but have since learned that they are really a lifesaver. I would never have been able to deal with my autoimmune disease if I didn’t have the support of antidepressants.
Do you think you might reconsider?

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..hi , yes I might reconsider but not getting off to a good start.
I was on one for many many years and went off due to narrow angle Glaucoma, 2018, stayed on one I shouldnt have, Clonazepam, and still on it but more for sleep
today the doctor who i have only met on phone or teleconference, but very nice, suggested 3 different antidepressants today and tomorrow I have a call, hopefully, with glaucoma specialist I saw yars ago to see if I can take any of them as they all raise eye pressure... I have had Iridotomy 2020 but apparently its not only the eye pressure has to be watched, but the optic nerve
then I remembered I had my dna done a few years ago and updated and the first antidepressant she suggested has "Major gene interaction" on my file; the second one has "Moderate" gene interaction and the third one also has moderate but web site says not best one for elderly.... so apprehension starting again
I have so many physical ailments as well that I dont think I can handle many side effects from antidepressants and there can be a lot especially to start off with... and some antidepressants have more than three names they are known by, very confusing for the patients
Thanks, J.

REPLY
Valerie | @lacy2 | May 4, 2021

Waiting for call from glaucoma specialist... again reviewed antidepressants and they seem to be conflicting with my age, eye condition, etc. so spent restless night worrying about it. Along with my laundry list of illnesses... really cant take much more side effects so dont know what to do. Maybe if I could get some of my issues dealt with, medical, I wouldnt be so anxius and fed up...i have never felt more so between a rock and a hard place, like many others I know, so in creeps the guilt. So, back into my bedroom and bed where I can hide from reality with my ipad. J.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 4, 2021
In reply to @lacy2 "Waiting for call from glaucoma specialist... again reviewed antidepressants and they seem to be conflicting with..." + (show)
@lacy2

Waiting for call from glaucoma specialist... again reviewed antidepressants and they seem to be conflicting with my age, eye condition, etc. so spent restless night worrying about it. Along with my laundry list of illnesses... really cant take much more side effects so dont know what to do. Maybe if I could get some of my issues dealt with, medical, I wouldnt be so anxius and fed up...i have never felt more so between a rock and a hard place, like many others I know, so in creeps the guilt. So, back into my bedroom and bed where I can hide from reality with my ipad. J.

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Hello @lacy2, I've been reading your posts. It sounds like you have a lot of medical problems as well as a lot of medication side effects. I have some of those same issues as well and I know how difficult it can be to deal with. It is easy to feel as you said like you are, "between a rock and a hard place."

I would encourage you to read some other discussions on Connect,

https://connect.mayoclinic.org/discussion/importance-of-focusing-on-positive-with-depression-anxiety/ and
https://connect.mayoclinic.org/discussion/taking-our-minds-off-things-what-are-you-watching/

While these discussions won't solve the physical/medical problems they may be able to encourage you not to spend the day in bed with your Ipad. I love my electronic devices, but they really aren't a substitute for a phone call to a friend or writing a note to someone who is in a difficult place.

Can you try this?

REPLY
1 reply
Valerie | @lacy2 | May 4, 2021
In reply to @hopeful33250 "Hello @lacy2, I've been reading your posts. It sounds like you have a lot of medical..." + (show)
@hopeful33250

Hello @lacy2, I've been reading your posts. It sounds like you have a lot of medical problems as well as a lot of medication side effects. I have some of those same issues as well and I know how difficult it can be to deal with. It is easy to feel as you said like you are, "between a rock and a hard place."

I would encourage you to read some other discussions on Connect,

https://connect.mayoclinic.org/discussion/importance-of-focusing-on-positive-with-depression-anxiety/ and
https://connect.mayoclinic.org/discussion/taking-our-minds-off-things-what-are-you-watching/

While these discussions won't solve the physical/medical problems they may be able to encourage you not to spend the day in bed with your Ipad. I love my electronic devices, but they really aren't a substitute for a phone call to a friend or writing a note to someone who is in a difficult place.

Can you try this?

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...yes I will read the discussions, thank you. J.

REPLY
Valerie | @lacy2 | May 4, 2021

...lots of great ideas, sort of reminds me of my former life.... the happiness expressed etc.

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