1. < Infectious Diseases

No Doctor can figure out what is wrong with me

Posted by j77 @j77, Dec 21, 2023

I had a one time 1020 mg Iron Infusion after being diagnosed with anemia after 3 years of severe periods.I had a reaction days later and have never been the same.The day I had the reaction it was hot and I had been exercising on the bike trail in the heat the day before.I was also at the Beach a week prior to my reaction.I had the Pfizer vaccines,but it was the first time I let my guard down around people by not wearing a mask. Months after the reaction I ended up losing strength/sensation in the trunk of my body and can barely walk now.At the beginning of my illness I could hardly swallow and had to live off of ensure for months,trouble concentrating where I would have to walk away, dizzy after eating and my breathing was not natural where I feel like it would pause at times.Hair on my head was coming out too.My hair basically ended up fusing together where I had to cut it short.I had long straight hair and it changed into a frizzy texture.Someone that I know that had cancer compared my hair to their hair after they had chemo.It has barely grown since cutting it last year and it does not grow down,but outward.Some of my other symptoms are trouble swallowing,difficulty getting up from a seated position,extreme constipation,not feeling food going down in my belly or signals that I am full,head feels like a bobble head because of loss of strength,severely dry eyes that feel like they are being pushed out of my head and extremely sensitive to sunlight.My smiling,laughing,chewing and swallowing feel like they are in slow motion from lack of strength in my facial muscles.Originally I could not cough,sneeze or yawn.These sensations are slowly coming back,but they are not as productive because of the lack of strength in the trunk of my body.From the research I have done it seems like the vagus nerve controls many of these functions.We have alot of Family members on both sides of the Family with Lupus.I have had several positive ANA's with 1.80 speckled titer,but the rheumatologists tell me it is not Lupus.I have met with Neurologists,Rhuematologists,Endricinologists,GI Doctors,etc.These specialists can not find much of anything.High Epstein barr titters,little things with my spine and neck and a few vitamins on the low side and extreme constipation.I have had an emg,muscle biopsy,Brain mri,neck and spine mri and nothing.I also had a long covid and Lymes test and thise came back negative as well.The only medicine I take is synthroid for thyroid diseases I have had since my 20's.Does anyone have any ideas what this could possibly be?

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frances007 | @frances007 | Dec 21, 2023

in reply to @j77 I share your frustration with not being able to be diagnosed, as my experience in trying to get some kind if definitive diagnosis after losing 40 percent of my body weight, having chronic diarrhea, rashes, enormous pain etc., has been exhausting. I have finally found some resolve in the fact that perhaps I have some rare disease that cannot be identified presently. I accept this. NORD is a very good organization that provides an abundance of support to those who might have a "rare" disease, and tells me that it can take up to 5 years to get some kind of diagnosis. It is terribly frustrating. In fact, I saw a PA yesterday because my mouth is covered with blisters and anything I eat causes a terrible burning sensation. I look like I got botox injections on my lips. LOL. She said it was caused by stress, no surprise. And while I became quite tearful during the visit, explaining my frustration with doctors repeating all the same tests, getting the same results and things of that nature, she asked me, "are you expecting too much from your doctor?" I respond that I just want to know what is wrong with me, what all these tests mean that show up as "abnormal" and what they mean in terms of my overall health situation. She agreed with me that yes, the tests are abnormal, but that whatever is going on with me, and why I look like a holocaust victim (a former "friend" said this to me) is yet to be determined.
I have not given up. However, I have found ways to channel my frustration and I challenge myself everyday to do something different to "reframe" my thought process. My art is my opiate. Everyone has their own. What is yours? For many it is religion, or exercise or like me, art. I am now in the process of filling in the letters of a quote that I have written on my living room wall: "Her whole life changed the day she decided to tell the truth about what made her happy." When I am feeling especially overwhelmed with life, I stand on my futon and color/paint the letters of this quote, and it helps me "focus on something more positive."
I wish I had a great answer for you, but this is how I deal with my journey to better health. I may never be diagnosed, and I fully accept this. Why? Because for me, at this point in my life, it just doesn't matter. As long as I am pain free, I am happy. As long as I can help others, which I do on a daily basis, as long as I have gratitude for everyday I wake up, I consider myself quite lucky.

REPLY
1 reply
j77 | @j77 | Dec 21, 2023
In reply to @frances007 "in reply to @j77 I share your frustration with not being able to be diagnosed, as..." + (show)
@frances007

in reply to @j77 I share your frustration with not being able to be diagnosed, as my experience in trying to get some kind if definitive diagnosis after losing 40 percent of my body weight, having chronic diarrhea, rashes, enormous pain etc., has been exhausting. I have finally found some resolve in the fact that perhaps I have some rare disease that cannot be identified presently. I accept this. NORD is a very good organization that provides an abundance of support to those who might have a "rare" disease, and tells me that it can take up to 5 years to get some kind of diagnosis. It is terribly frustrating. In fact, I saw a PA yesterday because my mouth is covered with blisters and anything I eat causes a terrible burning sensation. I look like I got botox injections on my lips. LOL. She said it was caused by stress, no surprise. And while I became quite tearful during the visit, explaining my frustration with doctors repeating all the same tests, getting the same results and things of that nature, she asked me, "are you expecting too much from your doctor?" I respond that I just want to know what is wrong with me, what all these tests mean that show up as "abnormal" and what they mean in terms of my overall health situation. She agreed with me that yes, the tests are abnormal, but that whatever is going on with me, and why I look like a holocaust victim (a former "friend" said this to me) is yet to be determined.
I have not given up. However, I have found ways to channel my frustration and I challenge myself everyday to do something different to "reframe" my thought process. My art is my opiate. Everyone has their own. What is yours? For many it is religion, or exercise or like me, art. I am now in the process of filling in the letters of a quote that I have written on my living room wall: "Her whole life changed the day she decided to tell the truth about what made her happy." When I am feeling especially overwhelmed with life, I stand on my futon and color/paint the letters of this quote, and it helps me "focus on something more positive."
I wish I had a great answer for you, but this is how I deal with my journey to better health. I may never be diagnosed, and I fully accept this. Why? Because for me, at this point in my life, it just doesn't matter. As long as I am pain free, I am happy. As long as I can help others, which I do on a daily basis, as long as I have gratitude for everyday I wake up, I consider myself quite lucky.

Jump to this post

Thankyou for responding. It sounds like you are in the same boat as me unfortunately.I am praying for you and hope they have answers for you soon.It is just hard when you go from pretty much healthy to not overnight.I assumed that my symptoms were brought on by Covid or the iron infusion sparked an autoimmune disease.I was hoping at least one doctor or a colleague has seen something similar to what I have.Each specialist I go to is stumped as to what is causing my symptoms.It is so frustrating.I have turned to art as well because I enjoy it and it makes me forget about how ill I am for a brief moment.I posted my symptoms in hopes that someone else has something similar or maybe has a family member with the same symptoms.

REPLY
frances007 | @frances007 | Dec 21, 2023

in reply to @j77 You know, I had an two iron infusions this past summer and had allergic reactions after each infusion, even though I was given IV benadryl, and then it was weeks before I felt any positive effects of the infusion; I am told this is common. I truly felt sick for a few weeks following each infusion and swore I would never have another one UNTIL I began noticing that I felt like a racehorse so to speak.
A friend, actually someone I met on this platform, sent me an email this morning suggesting that while my clinicians have no clue as to what is wrong with me other than that I have no immune system and more likely than not autoimmune disorders, that perhaps I am "helping" them in some way on their way to figure out what is wrong with me. I do plan to donate my body to science when I die with the hope that upon studying my various parts, students will learn something different. I don't mean to sound morbid when I say this, as I do have on my advanced health care directive that I am not an organ donor, with the exception of my corneas if they are viable for someone to see. Afterall, I am an artist and a very visual person.
I sometimes feel I have lost my resolve, and have finally come to terms that maybe my doctors really don't know and that I am expecting some kind of miracle drug, procedure etc that will "cure" me. However, I know that we are all imperfect, even the best of doctors are not magicians, although many would like to believe that they are. I believe that my doctor "usually" has the best intentions, but I accept that he is limited because I have such a variety of different symptoms. Being an information junkie, I often ask too many complicated questions or challenge my doctors because I have read so many different scientific articles online. Not Dr. Google, but medical journals and things of that nature. I have also connected with different organizations such as the Immunodeficiency Foundation, a non profit organization which has been very helpful to me. There is another wonderful non profit, the 50-State Network, and I have joined them to be an advocate for those like you and myself who are searching for answers, writing to congressmen/women in an attempt to persuade them to pass legislation for those of us who might have insurance, but are denied discounts on expensive medicine just because we either have Medicare, an Advantage Plan etc. For example, my neurologist prescribed Nurtec for migraine headaches. This is a new drug, and I think even Lady Gaga is one of the manufacturers "spokeswomen." I thought the drug was a miracle, but after filling it twice my copayment went up about 500 percent. While I was directed to the manufacturer for some financial support, I was denied the same because I have Medicare and an Advantage Plan. Had I known what the cost of the drug was, I never would have filled it, because after filling it twice I was thrown into that Medicare Donut Hole. Think: BIG PHARMA.
It's really too bad when we cannot get a straight answer, or are told that because a certain test result is within the "normal range" there is nothing to be worried about, when in fact there may be. For example, I get frequent UTI's, which can be related to one of my conditions. The urine cultures come back with blood cells etc, yet I am told my test results are "normal" because the culture was negative. I will be having a cystoscopy next month so my doctor can look inside my bladder. If you also get UTI's, I would recommend UTI FREE, a website developed by a doctor who had the same problem I have been having, and she developed the site for women like me/you who may get frequent infections. The information on that website is over the top fantastic and you can even download a questionnaire that you can take to your doctor so you remember to ask the right questions. I realize I am going off on a tangent here, but I saw your response and wanted to get back to you, especially because you mentioned being an artist and understand how helpful art of any kind can be of such comfort and help when we are afflicted with just about anything.
There was a fellow on this site who spoke about the iron infusions because he had either had an infusion or had done some research into what happens when one gets an iron infusion, and he declines to get one, and instead found a company that dispensed liquid iron. I cannot take iron supplements because it causes massive stomach issues. If you need another iron infusion in the future you might want to consider the liquid iron, as it might be what has caused your problems. A lot of information can be found on NIH or the Lancet. Or the Cleveland Clinic. Reliable sources of information that is tailored for professionals, but of course, their articles are also available to the public and are easily understood if you know basic medical terms and things of that nature.
It's great to learn that you too are an artist, as I know without it, I probably would have "done myself in" by now, however, since I became sick, I discovered that my creativity expanded like never before. When I am working late at night, listening to music I feel as though I have been taken to some kind of "outer limit" and my creativity explodes. I am sure you know the feeling, and it can be very exciting to step back in awe as you look at what you have created.
Like you, I went from fairly healthy to not in a very short period of time. Interestingly enough, all of this happened after my "hearing dog" had to be "put down." However, she was always putting her nose where my liver and pancreas are located, following me into the bathroom and things of that nature. I was certain she was on to something, and while I do not have cancer(yet), my doctor was very interested in my experience. In fact, I somehow came to terms with her death by convincing myself that she knew I was sick, and "leaving" me may not have been intentional, she left for a reason. I hope this makes sense. She flew off the sofa at dinner time, landed wrong on her leg and let out the loudest yelp I had ever heard. She was a pitbull mix and NEVER barked unless I told her to "speak." Initially I felt great guilt because I did not have the $4K to put her leg back together, but in hindsight, I really think she "knew." I think you "get it."
Stay in touch. I want to be healthy just like you, however, as I have said before, being sick has really turned me into a much better person in so many different ways. I never really thought highly of myself when others did until I got sick and began to understand the importance of gratitude, humility and things of that nature.
I am so sorry about your dilemma, and while I cannot get inside your head, I do understand how you "might" be feeling, and I wish I could offer you more than these words tonight. Prayers are good. I pray to the "universe." Whatever works, right? We can do this.

REPLY
2 replies
j77 | @j77 | Dec 22, 2023
In reply to @frances007 "in reply to @j77 You know, I had an two iron infusions this past summer and..." + (show)
@frances007

in reply to @j77 You know, I had an two iron infusions this past summer and had allergic reactions after each infusion, even though I was given IV benadryl, and then it was weeks before I felt any positive effects of the infusion; I am told this is common. I truly felt sick for a few weeks following each infusion and swore I would never have another one UNTIL I began noticing that I felt like a racehorse so to speak.
A friend, actually someone I met on this platform, sent me an email this morning suggesting that while my clinicians have no clue as to what is wrong with me other than that I have no immune system and more likely than not autoimmune disorders, that perhaps I am "helping" them in some way on their way to figure out what is wrong with me. I do plan to donate my body to science when I die with the hope that upon studying my various parts, students will learn something different. I don't mean to sound morbid when I say this, as I do have on my advanced health care directive that I am not an organ donor, with the exception of my corneas if they are viable for someone to see. Afterall, I am an artist and a very visual person.
I sometimes feel I have lost my resolve, and have finally come to terms that maybe my doctors really don't know and that I am expecting some kind of miracle drug, procedure etc that will "cure" me. However, I know that we are all imperfect, even the best of doctors are not magicians, although many would like to believe that they are. I believe that my doctor "usually" has the best intentions, but I accept that he is limited because I have such a variety of different symptoms. Being an information junkie, I often ask too many complicated questions or challenge my doctors because I have read so many different scientific articles online. Not Dr. Google, but medical journals and things of that nature. I have also connected with different organizations such as the Immunodeficiency Foundation, a non profit organization which has been very helpful to me. There is another wonderful non profit, the 50-State Network, and I have joined them to be an advocate for those like you and myself who are searching for answers, writing to congressmen/women in an attempt to persuade them to pass legislation for those of us who might have insurance, but are denied discounts on expensive medicine just because we either have Medicare, an Advantage Plan etc. For example, my neurologist prescribed Nurtec for migraine headaches. This is a new drug, and I think even Lady Gaga is one of the manufacturers "spokeswomen." I thought the drug was a miracle, but after filling it twice my copayment went up about 500 percent. While I was directed to the manufacturer for some financial support, I was denied the same because I have Medicare and an Advantage Plan. Had I known what the cost of the drug was, I never would have filled it, because after filling it twice I was thrown into that Medicare Donut Hole. Think: BIG PHARMA.
It's really too bad when we cannot get a straight answer, or are told that because a certain test result is within the "normal range" there is nothing to be worried about, when in fact there may be. For example, I get frequent UTI's, which can be related to one of my conditions. The urine cultures come back with blood cells etc, yet I am told my test results are "normal" because the culture was negative. I will be having a cystoscopy next month so my doctor can look inside my bladder. If you also get UTI's, I would recommend UTI FREE, a website developed by a doctor who had the same problem I have been having, and she developed the site for women like me/you who may get frequent infections. The information on that website is over the top fantastic and you can even download a questionnaire that you can take to your doctor so you remember to ask the right questions. I realize I am going off on a tangent here, but I saw your response and wanted to get back to you, especially because you mentioned being an artist and understand how helpful art of any kind can be of such comfort and help when we are afflicted with just about anything.
There was a fellow on this site who spoke about the iron infusions because he had either had an infusion or had done some research into what happens when one gets an iron infusion, and he declines to get one, and instead found a company that dispensed liquid iron. I cannot take iron supplements because it causes massive stomach issues. If you need another iron infusion in the future you might want to consider the liquid iron, as it might be what has caused your problems. A lot of information can be found on NIH or the Lancet. Or the Cleveland Clinic. Reliable sources of information that is tailored for professionals, but of course, their articles are also available to the public and are easily understood if you know basic medical terms and things of that nature.
It's great to learn that you too are an artist, as I know without it, I probably would have "done myself in" by now, however, since I became sick, I discovered that my creativity expanded like never before. When I am working late at night, listening to music I feel as though I have been taken to some kind of "outer limit" and my creativity explodes. I am sure you know the feeling, and it can be very exciting to step back in awe as you look at what you have created.
Like you, I went from fairly healthy to not in a very short period of time. Interestingly enough, all of this happened after my "hearing dog" had to be "put down." However, she was always putting her nose where my liver and pancreas are located, following me into the bathroom and things of that nature. I was certain she was on to something, and while I do not have cancer(yet), my doctor was very interested in my experience. In fact, I somehow came to terms with her death by convincing myself that she knew I was sick, and "leaving" me may not have been intentional, she left for a reason. I hope this makes sense. She flew off the sofa at dinner time, landed wrong on her leg and let out the loudest yelp I had ever heard. She was a pitbull mix and NEVER barked unless I told her to "speak." Initially I felt great guilt because I did not have the $4K to put her leg back together, but in hindsight, I really think she "knew." I think you "get it."
Stay in touch. I want to be healthy just like you, however, as I have said before, being sick has really turned me into a much better person in so many different ways. I never really thought highly of myself when others did until I got sick and began to understand the importance of gratitude, humility and things of that nature.
I am so sorry about your dilemma, and while I cannot get inside your head, I do understand how you "might" be feeling, and I wish I could offer you more than these words tonight. Prayers are good. I pray to the "universe." Whatever works, right? We can do this.

Jump to this post

Thankyou so much for all of the Great Information.I am going to take a look at those sites you mentioned.I am praying that you feel better soon and they have answers for you.

REPLY
kcalby | @kcalby | Dec 22, 2023

Dryness of mucus membranes; eyes, throat, with muscle pain to me makes me think of showgrins. But also there are HUNDREDS of types of arthritis. Have you seen a genetic counsellor?
I recommend studying human anatomy and physiology as much as possible to track down leads for them to follow. Doctors are so overworked they don’t have time to treat us holistically. I have a lot of similar experiences. For me tho I don’t relate to the trunk numbness but I get numbness. Got tested for MS but all my scans come back fine and all my blood tests are within normal range.

For shitty hair I always think of thyroid and hormones. So much of our oils or lack of are related to hormones; think acne for example.

Take all your blood test results from the last few years and put them in a chart and track the changes. I’m sick of being told my numbers are within normal range if I flare up and notice ok I’m still in the normal range but I just saw a huge spike within that range at the same time as I feel ________. Doctors don’t track everything we think, and they also know very little outside of their speciality and sometimes they’re so busy they don’t even know the recent research theories.

Subscribe to medical journals. Learn to interpret studies. Connect with people in your area. Figure out where the gaps in your healthcare are and imagine ways to solve them. We have to go ALL in to get help. We need to work together wherever possible. We are all trying to get help on these isolated islands so we reinvent the wheel every time. I believe in you. I’m so sorry for your experience. No one should experience all that and not get help. I can only imagine how hard it’s been. You can do this, you can figure it out - DONT GIVE UP

REPLY
2 replies
kcalby | @kcalby | Dec 22, 2023

Sjorgens*** haha sorry I’m dyslexic so I spell things phonetically sometimes!

REPLY
kcalby | @kcalby | Dec 22, 2023

I started listening to the podcast called symptomatic; there’s an episode of a dancers foot cramping and seizing and the discovery of RA.

She said she didn’t get help till she found a doctor to do a vector blood panel. It’s for inflammation I think. Find the episode and get the panel and tell us everything!
Or have u had one already?

REPLY
1 reply
kcalby | @kcalby | Dec 22, 2023
In reply to @kcalby "I started listening to the podcast called symptomatic; there’s an episode of a dancers foot cramping..." + (show)
@kcalby

I started listening to the podcast called symptomatic; there’s an episode of a dancers foot cramping and seizing and the discovery of RA.

She said she didn’t get help till she found a doctor to do a vector blood panel. It’s for inflammation I think. Find the episode and get the panel and tell us everything!
Or have u had one already?

Jump to this post

VECTRA
Sorry my brain fog is a mess today

REPLY
frances007 | @frances007 | Dec 22, 2023
In reply to @kcalby "Dryness of mucus membranes; eyes, throat, with muscle pain to me makes me think of showgrins...." + (show)
@kcalby

Dryness of mucus membranes; eyes, throat, with muscle pain to me makes me think of showgrins. But also there are HUNDREDS of types of arthritis. Have you seen a genetic counsellor?
I recommend studying human anatomy and physiology as much as possible to track down leads for them to follow. Doctors are so overworked they don’t have time to treat us holistically. I have a lot of similar experiences. For me tho I don’t relate to the trunk numbness but I get numbness. Got tested for MS but all my scans come back fine and all my blood tests are within normal range.

For shitty hair I always think of thyroid and hormones. So much of our oils or lack of are related to hormones; think acne for example.

Take all your blood test results from the last few years and put them in a chart and track the changes. I’m sick of being told my numbers are within normal range if I flare up and notice ok I’m still in the normal range but I just saw a huge spike within that range at the same time as I feel ________. Doctors don’t track everything we think, and they also know very little outside of their speciality and sometimes they’re so busy they don’t even know the recent research theories.

Subscribe to medical journals. Learn to interpret studies. Connect with people in your area. Figure out where the gaps in your healthcare are and imagine ways to solve them. We have to go ALL in to get help. We need to work together wherever possible. We are all trying to get help on these isolated islands so we reinvent the wheel every time. I believe in you. I’m so sorry for your experience. No one should experience all that and not get help. I can only imagine how hard it’s been. You can do this, you can figure it out - DONT GIVE UP

Jump to this post

in reply to @kcalby Yes, I get newsletters from many "reliable" sources. I totally understand that lab tests, which may be "normal" are not "normal" for everyone, and I got into a discussion about this very same thing this week with my PA. Yes, the results are "abnormally high" but they are still "normal." I give up. Not literally. I faithfully attend my medical appointments, knowing full well I will never be given the correct response, and I accept this.

I am far from giving up or giving in. However, I have given up any hope of getting a diagnosis, and I accept this.

REPLY
kcalby | @kcalby | Dec 22, 2023

I totally hear you
Good for you for you for taking things into your own hands. Diagnosis doesn’t always matter. For myalgic encephalomyelitis it’s treated symptomatically. It’s about the quality of life, that’s what matters for us to fight for cuz no one not even families can fight for that for us in the same way, we have to.

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