Trying to find answers and right diagnosis and Dr

Posted by jej @jej, Jan 3 9:53pm

Lengthy, but a run down. I had a horrible experience at my 1st rheumatologist visit today.
41 female. Got really sick last January, been seeking answers ever since. Always been active, and relatively healthy,aside from issues with feet and back.
Fatigue hit me hard past year, putting my normal life on back burner. Also have hair loss, lost 30 pounds, nausea, vomiting a lot, loss of appetite,constant low grade fever, bruise easily and all over, the fatigue is horrible, stay hot all the time (spent entire life being cold till now) . I spend every day feeling like I have the flu, is a good way to describe it. I don't sleep at night, not a problem falling asleep,but wake up and can't sleep after that. Headaches are non stop. I also spit up blood ( not cough, but spit up blood). My joints hurt and pop, and swell. I have started to lose motion in my hands ,and they are bothering me terribly along with my knees ,and wrists. Worse of morning and after sitting, but does keep me up at night too. Hot water and hearing pad helps.
13 years lower back started hurting, didn't have it looked at . 9 years ago feet started. Been numerous times. Diagnosed as plantar fascitis, insertional Achilles tendinitis, collapsed arches, neuropathy, retrocalcaneal bursitis, bone spurs, bone marrow edema,arthrits, degenerative ankle tendons. Told overuse due to job,and work,and had to be a root cause but dr never followed thru with finding.
Been for knee and elbow. Arthritis and tendinitis.
Started spitting up blood about 5 years ago. Have asthma and assumed work caused it from paint,sheetro k dust etc. Not painful at all,but irritating.
Dealt with all that,but can't handle fatigue
Seen primary. Ruled out diabetes, thyroid etc. Waited 4 months for gastro appointment. Did more bloodwork, high ferritin, high esr ,high platelets and alkaline phosphate. Said I need to have gallbladder removed but definitely awasnt cause of these symptoms. Said labs pointed autoimmune,and sent to rheumatologist. Primary and gastro both do not listen. Rheumatologist has been the worst visit of my life.
Told me I have 5 of 6 fibromyalgia symptoms. Did hand x rays,all he said was degenerative ,not life altering crippling. I won't even go into his attitude and what not, but proceeded to tell me i had a lot going on and may have a ..chemical imbalance.. I stayed on the forms I have been diagnosed with anxiety and depression since 16. This definitely isn't what this is, but of course hasn't helped that situation. Depression doesn't cause high esr and me to spit up blood. Wanted to do labs and do thyroid panel which was already done,but yet wouldn't xray my back. Told me he was a rheumatologist not a back dr but I definitely needed it looked at. I am at a loss, and haven't got much fight left in me with this. Nobody listens,nobody gets it. Nobody will do anything. Primary has pulled me off meds except bp,saying they do t wanna exasperate the situation with a potential bleeding ulcers. Gastro says to seek other help,because those symptoms are more bothersome..agreed. Rheumatologist said I should seek some more testing from Primary and gastro to help with the puzzle,and that if I see someone for a chemical imbalance I may feel better. I am at a loss, and just need some direction .

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Has a doctor considered evaluating you for leukemia? The symptoms sound similar. I hear your frustration and empathize because a family member has a rare disease that was hard to diagnose. The right doctor is out there, you just have to find him/her. Hopefully, your post to this group will help with that.

REPLY

Hello @jej, I would like to add my welcome to Connect along with @pwiley. It sounds like you have been dealing with a lot of symptoms for a long time with not much relief. I'm not a doctor and have no medical background but the spitting up of blood seems like it might be a major clue to what is going on. It sounds similar to hemoptysis. Here is some information I found that might be helpful. It also mentions fatigue as a symptom in table 3 Diagnostic Clues in Hemoptysis: Physical History under the Patient History section.

"Hemoptysis is the spitting of blood that originated in the lungs or bronchial tubes. The patient’s history should help determine the amount of blood and differentiate between hemoptysis, pseudohemoptysis, and hematemesis."
— Hemoptysis: Diagnosis and Management:
https://www.aafp.org/pubs/afp/issues/2005/1001/p1253.html
Have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic?

REPLY

Perhaps you could ask the rheum for further testing, there are so many lab tests they can do. There are also thousands of autoimmune diseases and are difficult to diagnose, let alone treat, sometimes it is a plan of trying a med to see if it works, if not, try another. Also in rheum, the term undifferentiated comes in alot as does non-specific. I have been treated for numerous years based on a diagnosis of undifferentiated and non-specific. Some of your symtpoms do make me wonder if you have ankylosing spondylitis or some sort of Crohns, or perhaps even PBC (primary biliary cholangitis), you may want to look those conditions up and see if they resonate with you and then ask your rheum, PCP, GI (whoever) if they would test you specifically for that. I have found that I am the only advocate I have, and maybe a good nurse in the providers clinic. You really have to do your research and almost know what you need to ask for. If you are not satisfied with your rheum and can go to another i would suggest you do that. I had a wonderful one that i went to for years until she changed jobs, then went to her partner which was a disaster ( like i had to get the board of trustees involved or i told them i would sue the Dr. for fraudulent charting), needless to say, i saw him only 1 time. Then i had to just take a chance and take an appt in another group and thank goodness, she turned out wonderful. I am very direct with the doctors and make sure they know that i will respect them if i am shown the same respect. In my area there is a shortage of rheum and i know alot of people complain of not having a great relationship with the rheum they see. I swear i will not leave this rheum unless she runs me out. I also have a very good PCP who will cover me if i am ever without a rheum. Be your own advocate, do your research, keep detailed records of your symptoms, what makes them worse or better, what meds you have tried, how they worked etc. Most things i have read say it takes an autoimmune patient an average of 3-7 years to get a diagnosis, nevermind whether its accurate or not. LOL I have had the same symptoms for 15-20 yrs before i saw a rheum, then it was actually my PCP who said "call me when you feel this way or have these episodes" and we will do lab immediately. The labs that indicate some forms of autoimmune change also, so you may need the same lab test many times before it is "caught" if you will. So dont decline if they offer to do labs that you may have had done in the past, because they can and do change. For example, if you are in "remission" or the treatment is working well for your particular condition, the labs that were previously abnormal may be normal and remain that way for a length of time, hopefully a long length of time. Good luck!

REPLY

Hi Jej. Sorry for your rheumatologist. I'm in the process of changing because of the attitude of the previous one, I won't tolerate that from a physician anymore. I assume you've had complete CBC and other blood and urine panels. Have you had Immunoglobulins (A, E, G, M, etc) checked? I hate to bring up the 'C' word (my wife has 2 we're dealing with) but has that been ruled out? Have you had a complete set of skeletal x-rays? Good luck.

REPLY
@pwiley

Has a doctor considered evaluating you for leukemia? The symptoms sound similar. I hear your frustration and empathize because a family member has a rare disease that was hard to diagnose. The right doctor is out there, you just have to find him/her. Hopefully, your post to this group will help with that.

Jump to this post

I have had a lot of blood work, and have had to be proactive in speaking up with things, as my primary likes to use the word…relatively ok…
But as far as outright saying they were interested in that type of test,no. They did send me for an ultrasound of abdominal region to make sure ,as they put it…a mass wasn't causing the spitting up of the blood.

REPLY
@johnbishop

Hello @jej, I would like to add my welcome to Connect along with @pwiley. It sounds like you have been dealing with a lot of symptoms for a long time with not much relief. I'm not a doctor and have no medical background but the spitting up of blood seems like it might be a major clue to what is going on. It sounds similar to hemoptysis. Here is some information I found that might be helpful. It also mentions fatigue as a symptom in table 3 Diagnostic Clues in Hemoptysis: Physical History under the Patient History section.

"Hemoptysis is the spitting of blood that originated in the lungs or bronchial tubes. The patient’s history should help determine the amount of blood and differentiate between hemoptysis, pseudohemoptysis, and hematemesis."
— Hemoptysis: Diagnosis and Management:
https://www.aafp.org/pubs/afp/issues/2005/1001/p1253.html
Have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic?

Jump to this post

Thank you for the info. I was diagnosed with asthma at 14, and it doesn't bother me much now, unless triggered by certain things. I figured the 1st thing they would do would be a lung xray. Nope.. I have begged since June..allshe will say is its coming from my gi region. She doesn't seem to want to entertain blood can come from lungs, heart , or gi tract.
I am open to finding anyone, anywhere who will listen.

REPLY
@stephkleier

Perhaps you could ask the rheum for further testing, there are so many lab tests they can do. There are also thousands of autoimmune diseases and are difficult to diagnose, let alone treat, sometimes it is a plan of trying a med to see if it works, if not, try another. Also in rheum, the term undifferentiated comes in alot as does non-specific. I have been treated for numerous years based on a diagnosis of undifferentiated and non-specific. Some of your symtpoms do make me wonder if you have ankylosing spondylitis or some sort of Crohns, or perhaps even PBC (primary biliary cholangitis), you may want to look those conditions up and see if they resonate with you and then ask your rheum, PCP, GI (whoever) if they would test you specifically for that. I have found that I am the only advocate I have, and maybe a good nurse in the providers clinic. You really have to do your research and almost know what you need to ask for. If you are not satisfied with your rheum and can go to another i would suggest you do that. I had a wonderful one that i went to for years until she changed jobs, then went to her partner which was a disaster ( like i had to get the board of trustees involved or i told them i would sue the Dr. for fraudulent charting), needless to say, i saw him only 1 time. Then i had to just take a chance and take an appt in another group and thank goodness, she turned out wonderful. I am very direct with the doctors and make sure they know that i will respect them if i am shown the same respect. In my area there is a shortage of rheum and i know alot of people complain of not having a great relationship with the rheum they see. I swear i will not leave this rheum unless she runs me out. I also have a very good PCP who will cover me if i am ever without a rheum. Be your own advocate, do your research, keep detailed records of your symptoms, what makes them worse or better, what meds you have tried, how they worked etc. Most things i have read say it takes an autoimmune patient an average of 3-7 years to get a diagnosis, nevermind whether its accurate or not. LOL I have had the same symptoms for 15-20 yrs before i saw a rheum, then it was actually my PCP who said "call me when you feel this way or have these episodes" and we will do lab immediately. The labs that indicate some forms of autoimmune change also, so you may need the same lab test many times before it is "caught" if you will. So dont decline if they offer to do labs that you may have had done in the past, because they can and do change. For example, if you are in "remission" or the treatment is working well for your particular condition, the labs that were previously abnormal may be normal and remain that way for a length of time, hopefully a long length of time. Good luck!

Jump to this post

It was 1st rheumatologist visit. I have never in my life had such a horrible experience. He refused to do anything till I go for a sleep study ,and see someone for a chemical imbalance. I am already on medication for depression,and don't need to be seen for that. He wouldn't listen, was aggressive, rude, and knew upfront from gastro referral and me filling out forms I was spitting up blood. He started about calling an ambulance, and just kept about it,and said he really didn't need to seeme,but continued and become more snode and aggressive. I walked out..never done that in my life, but walked out. Now ,I am back to square one. I have felt awful past 2 days ,and lost more weight
. I will be on the hunt as soon as I pull thru this what I call a flare. He said I definitely had fibromyalgia, but refused anything till sleep sturdy and psych. No thanks
I will keep pushing, and dig deeper. Sounds like you have had a rough timefor years,and here I already to give up. 🙂

REPLY
@richardab

Hi Jej. Sorry for your rheumatologist. I'm in the process of changing because of the attitude of the previous one, I won't tolerate that from a physician anymore. I assume you've had complete CBC and other blood and urine panels. Have you had Immunoglobulins (A, E, G, M, etc) checked? I hate to bring up the 'C' word (my wife has 2 we're dealing with) but has that been ruled out? Have you had a complete set of skeletal x-rays? Good luck.

Jump to this post

No skeletal xrays. Have had hands and feet done. Rheum refused to do back , said he wasn't a back dr ,but I definitely needed it looked at.
Cbc complete several times in past few months, no immunogloblins yet ..don't remember seeing them on there. No, on the c word. There still scratching their heads.

REPLY
@jej

It was 1st rheumatologist visit. I have never in my life had such a horrible experience. He refused to do anything till I go for a sleep study ,and see someone for a chemical imbalance. I am already on medication for depression,and don't need to be seen for that. He wouldn't listen, was aggressive, rude, and knew upfront from gastro referral and me filling out forms I was spitting up blood. He started about calling an ambulance, and just kept about it,and said he really didn't need to seeme,but continued and become more snode and aggressive. I walked out..never done that in my life, but walked out. Now ,I am back to square one. I have felt awful past 2 days ,and lost more weight
. I will be on the hunt as soon as I pull thru this what I call a flare. He said I definitely had fibromyalgia, but refused anything till sleep sturdy and psych. No thanks
I will keep pushing, and dig deeper. Sounds like you have had a rough timefor years,and here I already to give up. 🙂

Jump to this post

I am so sorry you had that experience, that is terrible!! I would have walked out too, there is no need for one human to treat another human like that. Is there a different rheum in your area? I would look into finding another one. Through the years I have decided i will not put up with that attitude. If they have an attitude at first visit, I am gone!! I am concerned about your spitting up blood. Did the GI doctor do any testing? One positive thing i have learned over the many struggles is to trust my body. I have really learned my body signals, trusted my intuition and have been fairly stable with little symptoms for awhile. I do hope you feel better and find a compassionate provider.

REPLY
@stephkleier

I am so sorry you had that experience, that is terrible!! I would have walked out too, there is no need for one human to treat another human like that. Is there a different rheum in your area? I would look into finding another one. Through the years I have decided i will not put up with that attitude. If they have an attitude at first visit, I am gone!! I am concerned about your spitting up blood. Did the GI doctor do any testing? One positive thing i have learned over the many struggles is to trust my body. I have really learned my body signals, trusted my intuition and have been fairly stable with little symptoms for awhile. I do hope you feel better and find a compassionate provider.

Jump to this post

We live in a rural area, so got to find another. We drive 1 to 2 hrs for a decent specialist. The gi wanted to treat as a bleeding ulcer. I couldn't tolerate the medicine she gave after 2 months , but she didn't give me anything else. Wasnt slowing the blood, onlt seemed tonslow the vomiting. Referred me to the rheum as she said the other symptoms that pointed that direction, seemed more bothersome to me, which they do. She advised me call primary about high ferritin. My appointment was Nov 28, I have called endlessly. No phone call back. Rheum said call primary about that and headaches. I am just stuck .

REPLY
Please sign in or register to post a reply.