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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@rashida

@lacy2 we seem to have so much in common - except I was born and raised in India and Pakistan! I came here alone too, in 1969 at age 23.

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...its hard leaving our families behind isnt it? I think about how my parents coped with their age related illnesses etc. and sometimes feel I am suffering so much because I left them.... sounds silly but thats how I feel. If you ever want to p.m. me we could chat, up to you. People tell me it was ok and I am now Canadian citizen but the main thing I miss is FAMILY. J.

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@lacy2

at becky – icon not working …thank you, have been on list for a new fam dr where I live since Sept. 2019, about 400 of us in this 54,000 small city and outskirts; even been on waiting list for nurse prac., but still waiting. The drs at walk-in clinic/phone have been good, its just I have to get copies of everything such as blood tests and such to show a doctor at emerge; or specialist, and I have papers and files all over….. had I known this would happen I would not have left my last doctor of 20 yrs but he was getting sloppy and gave me antibiotic without proper testing and i got P.N. thing is he looked it up in his big black b ook (a book!!) and said: side effects headache and nausea…whereas there were 3 pages of notes with meds from pharmacy so we had a chat and i decided to try new dr… and he left town. Thank you so much for caring. J

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@lacy2 - I have wanted to move out of Toronto, but it’s stories like yours that keep me rooted here! It’s bad enough here, finding a family physician who takes in new patients, but outside the city it is way worse! And you need a family physician first, before you can be referred to a specialist - another needle in the medical haystack!

You have my sympathy! If you ever need to see a doctor in Toronto, you are welcome to stay at our home (if we are still living here, lol - we are still considering a move) before and after your appointments!

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@change25

Very thoughtful advice, thanks Sue. I'll definitely adopt some of the techniques you've mentioned. Yeah, much of the stress also stems from my first set of bloods returning as "normal". I keep forseeing these results doing the same; where I stay stuck in a continual loop not knowing what's causing my grief. Like you say your mind can definitely aid or hinder you depending on your perspective.

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@change25 I’m wondering, are you required to get a referral from your primary doctor before you can see anyone else? What does your MD say about a referral to a board certified rheumatologist?
I really ‘get’ your frustration. I’m so sorry and wish you better luck.

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@rashida

@lacy2 - I have wanted to move out of Toronto, but it’s stories like yours that keep me rooted here! It’s bad enough here, finding a family physician who takes in new patients, but outside the city it is way worse! And you need a family physician first, before you can be referred to a specialist - another needle in the medical haystack!

You have my sympathy! If you ever need to see a doctor in Toronto, you are welcome to stay at our home (if we are still living here, lol - we are still considering a move) before and after your appointments!

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@rashida So kind of you to offer my staying at your home, appreciate it.... I haven't travelled far from where I live for a few years, but here's hoping one day in the future I will be able to once again
🌷🌷🌷

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@becsbuddy

@change25 I’m wondering, are you required to get a referral from your primary doctor before you can see anyone else? What does your MD say about a referral to a board certified rheumatologist?
I really ‘get’ your frustration. I’m so sorry and wish you better luck.

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Unfortunately a refferal is required. I can only assume that he's waiting on more specific results so that I can be referred to the correct specialist. Much of what's happened is probably the result of my first bloods. Where he believed that whatever was going on was something minor; such as a vitamin deficiency. Thank you, I should know more next week...fingers crossed.

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@ess77 and others who offer help: There are some amazing "coping strategies" on here and lucky are those who have seen world class doctors at Mayo etc., but what about when we feel we can no longer cope; have tried the mental health remedies, attended courses on mindfulness, listened to podcasts etc., seen mental health therapists and such over the many years while working and raising family... but health issues keep mounting, have not been too lucky in doctors who are interested in health issues, or the health issues are incurable etc. etc.... plus we all live with different family, income, backgrounds, past trauma etc., its so much to deal with, there comes a time especially when approaching 80 and with mind changes, limited mobility, dependency, friends and acquaintances passubng away, fatigue etc., when is it time for some of us to stop climbing the mountain, sit on a rock, look at the scenery, and let nature takes its course... not being morbid but, for me, realistically and I honestly am concerned about the day/s I am absolutely dependent on others, it's really not what I want.
Of course, encouragement, as I used to get and still do to a point is so very valuable and we can't sit back and do nothing and expect to solve problems, but every story has a final chapter and I feel this is mine and am grateful for my life over many others of course, but its harder each day. Bless you and others here for caring so much and what you say is true, but sometimes I feel the well is just too deep to get out of. 🌻

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@lacy2

@ess77 and others who offer help: There are some amazing "coping strategies" on here and lucky are those who have seen world class doctors at Mayo etc., but what about when we feel we can no longer cope; have tried the mental health remedies, attended courses on mindfulness, listened to podcasts etc., seen mental health therapists and such over the many years while working and raising family... but health issues keep mounting, have not been too lucky in doctors who are interested in health issues, or the health issues are incurable etc. etc.... plus we all live with different family, income, backgrounds, past trauma etc., its so much to deal with, there comes a time especially when approaching 80 and with mind changes, limited mobility, dependency, friends and acquaintances passubng away, fatigue etc., when is it time for some of us to stop climbing the mountain, sit on a rock, look at the scenery, and let nature takes its course... not being morbid but, for me, realistically and I honestly am concerned about the day/s I am absolutely dependent on others, it's really not what I want.
Of course, encouragement, as I used to get and still do to a point is so very valuable and we can't sit back and do nothing and expect to solve problems, but every story has a final chapter and I feel this is mine and am grateful for my life over many others of course, but its harder each day. Bless you and others here for caring so much and what you say is true, but sometimes I feel the well is just too deep to get out of. 🌻

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@lacy2 I completely understand what you’ve said. Sometimes the burdens can just be too heavy, but life is too valuable to just give up. What would you say is the biggest thing you need help with? How can we, your friends help you?

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@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

@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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Hi June, I hope that today is less dark than yesterday and that the well is less deep. It's May already and finally. Slowly my surroundings are getting greener. I love to see the spring flowers. My forsythia is in full bloom and the tulips are starting to open. It brings such hope after a long winter. Are you seeing the signs of rejuvenation around you, too?

May also means it is only a matter of weeks until you see a specialist. I'm glad that you have taken this step and that you are seeking guidance.

How are you doing today?

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@colleenyoung

Hi June, I hope that today is less dark than yesterday and that the well is less deep. It's May already and finally. Slowly my surroundings are getting greener. I love to see the spring flowers. My forsythia is in full bloom and the tulips are starting to open. It brings such hope after a long winter. Are you seeing the signs of rejuvenation around you, too?

May also means it is only a matter of weeks until you see a specialist. I'm glad that you have taken this step and that you are seeking guidance.

How are you doing today?

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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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