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Still struggling with answers
Struggling for answers, finding it hard for doctors to belive me as I am so young. I am a RN and what I was taught is that if you know there is something wrong with you there is. My higher family also has odd, similar symtpoms, so I'm beginning to think it's one of those rare genetic disorders. I have a positive ANA, joint pain, extreme fatigue, initially diagnosed with lupus, now I swear I have symtpoms similar to MS. I have spine and bone problems as my family does. I have major GI issues, like my family, and it looks like I will need a bowel resection. My mom has lupus. My aunt has symptoms milder than mine. My other aunt has DI and is allergic to every antibiotic once she takes it. Because I am 23 doctors tend to label me as a psych case or a drug seeker. For that reason I know I must get a diagnosis in order for them to believe me so that I may get my symtpms treated and go back to doing what I love and do best; Hospice nursing and finish getting my NP in palliative care. Thank you.
Best Answer
Thanks for the feedback! I'm sure I'll get the results next week. Oh, and about getting copies of lab results? I picked up an ER report when I went there for extreme pain. Blood tests were ordered and it turned out I was anemic. They didn't even tell me or do anything about it. And with the whole Celiac disease thing, the only way I knew to follow up with that was by going through my whole 200 page GI records that I had sent to me. No one told me I tested positive in the colon biopsy. Lesson? Can't trust all doctors, so I'm taking this into my own hands! :) Take care!
Sara
Sara
I mean who knows what is causing the esophagitis and gastritis at this point. Could be GERD/acid reflux which can either be just something you would have anyhow, or could be a secondary symptom to whatever autoimmune condition you are potentially looking at. I had those issues as well, so who knows. I am sure the biopsies will reveal a whole lot more as to what is going on in there... I'm sure the aspirin are not helping the upper GI issues though.
It seems like you have quite a few systems that are being effected and now your Dr.s have to be like detectives and find out what things are related or secondary to a bigger picture and which are not.
10 antibody tests is a good start. I'm really really curious to know which ones she ordered, but I'm positive she is doing the common ones and if anything comes out positive or any unusual markers pop up she might run additional tests including more specific ones. Also with the shorthand they use you'd be surprised how many tests a few little acronyms can yield!. Like CBC: complete blood count.... ends up really checking for like 20 different things. So maybe there is more then meets the eye.
I look forward to hearing how those come out, don't forget to post your results and ALWAYS get copies of your labs and tests for your own personal records.....
It seems like you have quite a few systems that are being effected and now your Dr.s have to be like detectives and find out what things are related or secondary to a bigger picture and which are not.
10 antibody tests is a good start. I'm really really curious to know which ones she ordered, but I'm positive she is doing the common ones and if anything comes out positive or any unusual markers pop up she might run additional tests including more specific ones. Also with the shorthand they use you'd be surprised how many tests a few little acronyms can yield!. Like CBC: complete blood count.... ends up really checking for like 20 different things. So maybe there is more then meets the eye.
I look forward to hearing how those come out, don't forget to post your results and ALWAYS get copies of your labs and tests for your own personal records.....
Thanks for the feedback! I just got back from the procedure. I was so worried about getting loaded off the drugs, but all that happened was I got sedated. Like my first endoscopy, I don't remember anything. I was hoping to at least get some pain releif from the Fentanyl, but it didn't do a thing! I woke up at 5 this morning in such bad pain. I went to the chiropractor for my neck yesterday and got messed up again, you can even feel my neck and tell it's swollen. I can't even touch it!
They found just by looking at my stomache I had a horrible case of gastritis and esophagitis-which I guess would go along with the Celiac diagnosis. I'm thinking it could also be from the Aspirin I take every day. i take so many over the counter pills it's ridiculous. I just want to show doctors I'm trying to reduce the pain without narcotics so they won't think I'm drug seeking. The doctor gave me Dexilant 60mg, which I guess is like Protonix but stronger. Never even heard of it before.
So I'm hoping the results will be back by next week, along with my blood work. Hopefully i'll be able to get into my neurologist next week as well to discuss the MRIs. My rheumatologist ordered thyroid hormones, but not sure about antibodies. She said she was doing a full autoimmune work up, but she only ordered like 10 tests, and I know there's more than that out there! My mom had part of her thyroid gland removed-she can't remember why-but thyroid problems also run in our family.
Again, thanks for the response. It's nice to chat with someone who's so supportive :) Hope all is going well with you as well!
Sara
They found just by looking at my stomache I had a horrible case of gastritis and esophagitis-which I guess would go along with the Celiac diagnosis. I'm thinking it could also be from the Aspirin I take every day. i take so many over the counter pills it's ridiculous. I just want to show doctors I'm trying to reduce the pain without narcotics so they won't think I'm drug seeking. The doctor gave me Dexilant 60mg, which I guess is like Protonix but stronger. Never even heard of it before.
So I'm hoping the results will be back by next week, along with my blood work. Hopefully i'll be able to get into my neurologist next week as well to discuss the MRIs. My rheumatologist ordered thyroid hormones, but not sure about antibodies. She said she was doing a full autoimmune work up, but she only ordered like 10 tests, and I know there's more than that out there! My mom had part of her thyroid gland removed-she can't remember why-but thyroid problems also run in our family.
Again, thanks for the response. It's nice to chat with someone who's so supportive :) Hope all is going well with you as well!
Sara
I can relate believe me! It took me years to get a DX.... and I even at times felt like it must be mental. I even had a Dr. say "sounds like you are a bit depressed, maybe that is causing you to feel ill." and I said "OR, don't you think that maybe feeling ill for years is making me a bit depressed?" Needless to say I never ended up going back to him.
As far as Celiac goes.... just wait and see how the biopsy goes. A biopsy is very important in the DX process of Celiac. Do not go gluten free until after you have had your biopsy. Blood work alone will not always detect damage from gluten intolerance. My serum levels were negative for Celiac however i sent in samples and DNA to a lab in Texas and they came back positive for gluten intolerance and showed I had 2 genes for celiac one from my mom and one from my dad. Also, my brother had positive bloodwork for Celiac, but was never given a DX until he had the positive biopsy which showed damaged villi... So I think it's pretty standard that they order a biopsy of the small intestine just to see how damaged it is and if you are suffering from absorption problems, and to confirm the DX etc.
Hang in there, you will get some answers when you get some of your tests back.... and eventually it will get sorted out even if it takes longer then you would like.
As you said before.... people know when something is not right with their bodies and you will one day find out exactly what it is but it will take time, patience, and some good Dr.s running the right tests. Did your rheumy order a thyroid panel including antibodies by the way? Those blood results should be in soon so hang in there and lets see how they come back. Remember to post back when you get them and update us!
As far as Celiac goes.... just wait and see how the biopsy goes. A biopsy is very important in the DX process of Celiac. Do not go gluten free until after you have had your biopsy. Blood work alone will not always detect damage from gluten intolerance. My serum levels were negative for Celiac however i sent in samples and DNA to a lab in Texas and they came back positive for gluten intolerance and showed I had 2 genes for celiac one from my mom and one from my dad. Also, my brother had positive bloodwork for Celiac, but was never given a DX until he had the positive biopsy which showed damaged villi... So I think it's pretty standard that they order a biopsy of the small intestine just to see how damaged it is and if you are suffering from absorption problems, and to confirm the DX etc.
Hang in there, you will get some answers when you get some of your tests back.... and eventually it will get sorted out even if it takes longer then you would like.
As you said before.... people know when something is not right with their bodies and you will one day find out exactly what it is but it will take time, patience, and some good Dr.s running the right tests. Did your rheumy order a thyroid panel including antibodies by the way? Those blood results should be in soon so hang in there and lets see how they come back. Remember to post back when you get them and update us!
Hey, just wanted to post an update. I saw a GI doctor who was clueless as to what was causing my severe constipation/GI symptoms until I showed him my positive IgG biopsy in my old colonoscopy. So tomorrow I'm scheduled for an upper GI to determine the Celiac diagnosis. I'm a little confused as my rheumatologist said she could confirm the diagnosis in blood work, but this GI guy wants to do an upper GI. Figure I might as well do both to be sure!
I've been cutting down on Gluten and taking Glucosamine for my joints and actually am experiencing some releif from joint pain and fatigue. My back/neck are still a huge problem, so next week I get an MRI of my neck.
I saw a neurologist finally, my insurance said the first available appointment was in June, so I had to schedule a self-pay appointment, again! I'm tired of waiting on my insurance. The doctor said he definitely wanted to see the neck MRI results. I'm thinking that could be the cause of some of my most recent neuro symptoms. He also wanted to look at the recent brain MRI I had, that I don't even think the other neurologist I paid for even looked at or mailed the copy back to me like he would! He practically just looked at me, saw I was a 23 y/o girl who looks fine, and dismissed with without really an exam!
This neurologist was suspicious at first, as I do realize I am young and am on pain pills, and doctors see a lot of drug addicts. He kept asking if I was taking amphetamines or other drugs. Once I told him a bit more of my background he seemed to believe I was suffering. He said that with either Lupus or MS there could be even slight inflammation or changes not noted on the report. But he did say MS and Lupus MRIs could be similar, and I was initially told 5 years ago I had an SLE type of autoimmune illness.
I am scared that some of this is all in my head. I'm scared I don't have Celiac, as that could easily be treated and would explain multiple symptoms I have, from fatigue to joint pains from the malnutrition, etc. But I'm also scared if I do. How will I ever be able to eat out again! I already have such a sensative stomache as is and am a vegetarian, so it's hard for me to find stuff to eat at resteraunts.
I'm scared all my blood work will come back fine and my nice rheumatologist will dismiss me and not continue to seek answers. I'm scared I'm creating pain in my head. I know my pain increases with stress and correlates with my mood at times, but a part of me is scared my disease is so sick it creates pain so I can get narcotics, even though I've been clean for over 4 years and actively work a strong program.
I'm scared of the neck MRI because I know it's going to be bad. My neck is seriously messed up. Other people can feel parts of my back swollen at times and that my spine is not normal. I know MRIs are most usually ordered when surgery is the only option.
I'm trying to keep my head up and take things one day at a time, as there is nothing I can do about the future-it's not in my hands. I just have fear as I still have no source of income and my mom is laying this huge guilt trip on me to get a job. But I seriously can't work right now. Problem is I can't get on disability without an official diagnosis or MRI of my neck.
So I'm in a bit of a depression right now, especially because someone on another website told me this was all in my head. Sometimes I allow other people to talk me into doubting myself. But this website trully helps me, as I love answering the questions I get in my nursing box. It makes me feel like I can still be of use to society!
Thank you 2 again for all your support and beleiving in what I'm going through. It really helps to know people who encourage you to persist and advocate. Take care and best wishes!
Sara
I'm still waiting for the blood results my rheumatologist ordered. I still don't see my pain specialist for 2 weeks, but haven't been taking my pain meds, except for twice, as they don't seem to work anyway!
I've been cutting down on Gluten and taking Glucosamine for my joints and actually am experiencing some releif from joint pain and fatigue. My back/neck are still a huge problem, so next week I get an MRI of my neck.
I saw a neurologist finally, my insurance said the first available appointment was in June, so I had to schedule a self-pay appointment, again! I'm tired of waiting on my insurance. The doctor said he definitely wanted to see the neck MRI results. I'm thinking that could be the cause of some of my most recent neuro symptoms. He also wanted to look at the recent brain MRI I had, that I don't even think the other neurologist I paid for even looked at or mailed the copy back to me like he would! He practically just looked at me, saw I was a 23 y/o girl who looks fine, and dismissed with without really an exam!
This neurologist was suspicious at first, as I do realize I am young and am on pain pills, and doctors see a lot of drug addicts. He kept asking if I was taking amphetamines or other drugs. Once I told him a bit more of my background he seemed to believe I was suffering. He said that with either Lupus or MS there could be even slight inflammation or changes not noted on the report. But he did say MS and Lupus MRIs could be similar, and I was initially told 5 years ago I had an SLE type of autoimmune illness.
I am scared that some of this is all in my head. I'm scared I don't have Celiac, as that could easily be treated and would explain multiple symptoms I have, from fatigue to joint pains from the malnutrition, etc. But I'm also scared if I do. How will I ever be able to eat out again! I already have such a sensative stomache as is and am a vegetarian, so it's hard for me to find stuff to eat at resteraunts.
I'm scared all my blood work will come back fine and my nice rheumatologist will dismiss me and not continue to seek answers. I'm scared I'm creating pain in my head. I know my pain increases with stress and correlates with my mood at times, but a part of me is scared my disease is so sick it creates pain so I can get narcotics, even though I've been clean for over 4 years and actively work a strong program.
I'm scared of the neck MRI because I know it's going to be bad. My neck is seriously messed up. Other people can feel parts of my back swollen at times and that my spine is not normal. I know MRIs are most usually ordered when surgery is the only option.
I'm trying to keep my head up and take things one day at a time, as there is nothing I can do about the future-it's not in my hands. I just have fear as I still have no source of income and my mom is laying this huge guilt trip on me to get a job. But I seriously can't work right now. Problem is I can't get on disability without an official diagnosis or MRI of my neck.
So I'm in a bit of a depression right now, especially because someone on another website told me this was all in my head. Sometimes I allow other people to talk me into doubting myself. But this website trully helps me, as I love answering the questions I get in my nursing box. It makes me feel like I can still be of use to society!
Thank you 2 again for all your support and beleiving in what I'm going through. It really helps to know people who encourage you to persist and advocate. Take care and best wishes!
Sara
I'm still waiting for the blood results my rheumatologist ordered. I still don't see my pain specialist for 2 weeks, but haven't been taking my pain meds, except for twice, as they don't seem to work anyway!
Sara,
That is GREAT news. I am so glad to hear that you found someone that is understanding and concerned. It makes sense that she was so confused as to why your other Dr's never followed up with more bloodwork! But then again, I think a lot of Dr's are in the dark about autoimmune and never even think of considering it.
Goodluck on your tests and let us know how they turn out!
That is GREAT news. I am so glad to hear that you found someone that is understanding and concerned. It makes sense that she was so confused as to why your other Dr's never followed up with more bloodwork! But then again, I think a lot of Dr's are in the dark about autoimmune and never even think of considering it.
Goodluck on your tests and let us know how they turn out!
Just wanted to give an update that I saw a wonderful rheumatologist today, a whole hour appointment, not consisting just of a physical exam, but of a detailed symptom list and history. She listened to every problem and is trully concerned for my health and thinks all my concerns are valid. She is going to work with me until we find out what's wrong.
I brought in what old medical records I had and showed her I tested positive for IGG. She agreed I could have celiac disease and is disturbed my old GI specialists never followed up with the secondary bloodwork. I told her about my past history with ANA titers and she doesn't get why no one every ordered a complete autoimmune workup. So she ordered a bunch of bloodwork, agrees that I definitely need to be seen by the MS specialty group, and will help me to get a follow up echocardiogram of my heart and MRI of my neck.
She says I'm a complicated case and understands why it's easy for doctors to look at me, think I'm fine, and why eyebrows are raised when I ask for pain killers. She knows how tired I am and how much pain I am which I so appreciate. She had to call my primary doctor before writing a script and I heard over the phone my primary pretty much state in a matter of fact way that I was just a drug seeker, desperately looking for drugs and the was literally nothing wrong with me. This rheumatologist empathized and is trying to get my pain specialist appointment moved up.
For now I'm functioning ok, on what life I've come to accept. I just basically want to get to a point where I have all written referrals from my primary doctor in my hand so I don't have to deal waiting for medi-cal, and so I never have to see my judgemental primary doctor ago, and only go to see specialists. I still need an orthepedist, GI dr, pain specialist, MS specialist, plus the rheumatologist to total it. And of course the psychiatrist.
Thanks again for your postings, and, what I call, expertise :)
Sara
I brought in what old medical records I had and showed her I tested positive for IGG. She agreed I could have celiac disease and is disturbed my old GI specialists never followed up with the secondary bloodwork. I told her about my past history with ANA titers and she doesn't get why no one every ordered a complete autoimmune workup. So she ordered a bunch of bloodwork, agrees that I definitely need to be seen by the MS specialty group, and will help me to get a follow up echocardiogram of my heart and MRI of my neck.
She says I'm a complicated case and understands why it's easy for doctors to look at me, think I'm fine, and why eyebrows are raised when I ask for pain killers. She knows how tired I am and how much pain I am which I so appreciate. She had to call my primary doctor before writing a script and I heard over the phone my primary pretty much state in a matter of fact way that I was just a drug seeker, desperately looking for drugs and the was literally nothing wrong with me. This rheumatologist empathized and is trying to get my pain specialist appointment moved up.
For now I'm functioning ok, on what life I've come to accept. I just basically want to get to a point where I have all written referrals from my primary doctor in my hand so I don't have to deal waiting for medi-cal, and so I never have to see my judgemental primary doctor ago, and only go to see specialists. I still need an orthepedist, GI dr, pain specialist, MS specialist, plus the rheumatologist to total it. And of course the psychiatrist.
Thanks again for your postings, and, what I call, expertise :)
Sara
Sara,
No problem. I don't mind sharing my experiences... communities like this one were a HUGE help for me in my process towards a diagnosis.
If you had some thyroid tests that were off that alone can make you feel miserable. Hopefully your Dr. will run the whole thyroid panel including thyroid antibodies to check for autoimmune thyroid problems. Low thyroid levels can also cause constipation!! And even with thyroid levels off a little it can effect you greatly.
The GF diet is very difficult to stick to and navigate at least at first. I kind of view it as a life-style change. For me being GF wasn't more expensive but then again I kind of mostly cut out baked good except when I have a bad craving and then I find I don't mind the extra 2 bucks for a box of GF cookie mix. It is getting a lot cheaper too now that so many more GF products are coming out on the shelf. I find it pretty inexpensive but then I just basically subbed bread for rice and changed things around a little. With all the alternatives out now its not even too bad. But it's a personal decision and I wouldn't force anyone to do it unless they were motivated to do so.
I think you are making a good decision to pursue this even if you have to pay out of pocket. Find one good Dr. and stick to him/her. Get all your testing done at once and get it over with. You may get some answers. The truth is that you might not really get a diagnosis which can be frustrating but sometimes it is really nice for another medical professional to validate how your feel.
Let us know how it goes with the new doctor.... and how all the tests come back.
:)
No problem. I don't mind sharing my experiences... communities like this one were a HUGE help for me in my process towards a diagnosis.
If you had some thyroid tests that were off that alone can make you feel miserable. Hopefully your Dr. will run the whole thyroid panel including thyroid antibodies to check for autoimmune thyroid problems. Low thyroid levels can also cause constipation!! And even with thyroid levels off a little it can effect you greatly.
The GF diet is very difficult to stick to and navigate at least at first. I kind of view it as a life-style change. For me being GF wasn't more expensive but then again I kind of mostly cut out baked good except when I have a bad craving and then I find I don't mind the extra 2 bucks for a box of GF cookie mix. It is getting a lot cheaper too now that so many more GF products are coming out on the shelf. I find it pretty inexpensive but then I just basically subbed bread for rice and changed things around a little. With all the alternatives out now its not even too bad. But it's a personal decision and I wouldn't force anyone to do it unless they were motivated to do so.
I think you are making a good decision to pursue this even if you have to pay out of pocket. Find one good Dr. and stick to him/her. Get all your testing done at once and get it over with. You may get some answers. The truth is that you might not really get a diagnosis which can be frustrating but sometimes it is really nice for another medical professional to validate how your feel.
Let us know how it goes with the new doctor.... and how all the tests come back.
:)
My goodness, you guys amaze me with your level of knowledge. I guess after years of struggling you have to know these things. I see a rheumatologist tomorrow, have a symptoms list, family hystory sheet, and daily symptoms diary prepared, and am going to request certain testing be done, being that I am self pay anyway-ridiculous I know but I'm desperate.
Basically my original bloodwork that caught my positive ANA showed thyroid problems as well, I was followed by specialists for a couple of months, and then I lost my insurance. Then I moved. So basically I had no doctor to follow up with anything for 4 years. And now I'm left with where I'm at today, symptoms have progressed, but I'm in a knew area, am fighting with my insurance to see specialists as I never recieved a ddiagnosis, and am having a hard time finding doctors that will believe me as i have so little medical records, am 23 years old, and to them look fine.
I have tried for short periods of time the GF diet which I have notice feeling better on, however it's so expensive! I find unless you do a lot of baking from scratch all the pre-bought foods are twice as pricey. So I don't know what to do about that. I did have a colonoscopy done which showed I tested positive in parts for Celiac disease, by my GI doctor didn't follow up.
Anyway, that you for sharing your knowledge with me, I appreciate you taking the time to listen-or read rather :)
Sara
Basically my original bloodwork that caught my positive ANA showed thyroid problems as well, I was followed by specialists for a couple of months, and then I lost my insurance. Then I moved. So basically I had no doctor to follow up with anything for 4 years. And now I'm left with where I'm at today, symptoms have progressed, but I'm in a knew area, am fighting with my insurance to see specialists as I never recieved a ddiagnosis, and am having a hard time finding doctors that will believe me as i have so little medical records, am 23 years old, and to them look fine.
I have tried for short periods of time the GF diet which I have notice feeling better on, however it's so expensive! I find unless you do a lot of baking from scratch all the pre-bought foods are twice as pricey. So I don't know what to do about that. I did have a colonoscopy done which showed I tested positive in parts for Celiac disease, by my GI doctor didn't follow up.
Anyway, that you for sharing your knowledge with me, I appreciate you taking the time to listen-or read rather :)
Sara
Thyroidian is right in that you must be persistent even when it seems fruitless. I went through a similar trial of woes except with slightly different symptoms. One thing to remember is that unfortunately it can take a very long time to get an accurate diagnosis when it comes to autoimmune conditions if at all. My journey began with feeling off... i got my Hashimotos diagnosis and then even after going on the thyroid hormones the symptoms progressed into feeling hungover even with out drinking and extreme fatigue and malaise. I just knew this was more then my thyroid and i pushed it and had to see several different doctors until i could find one that believed me and stuck with me. I had always had the positive ANA (1:320 speckled) but for a while that is all that was showing up. I had nearly given up after almost 3 years of wondering what the heck was going on with me and many Dr's.... when my Internist decided to order another round of all the same autoimmune panels. It came back SCL-70 positive which was a shocker since i had no skin symptoms to indicate scleroderma and still to this day do not. No Rheumies wanted to believe I had it because i was 27, looked good and didn't appear ill... but the tests didn't lie and one test after another led them to where we are today.
Point is that it can be a VERY frustrating path when dealing with something with so many variables as autoimmune... but stick with it!!
Another thing I wanted to throw out there is that it seems as though a lot of people that deal with autoimmune problems also seem to have some level of gluten intolerance if not straight up Celiac. I never seemed to have symptoms of gluten intolerence but since my brother has celiac I sent my DNA and other samples for testing and I found out that I did indeed have it. Going GF certainly helped my regularity and digestion. Also it seems there is a link between a couple of the genes that predisposes you to gluten intolerence (HLA-DQ2) and other autoimmune conditions. I mention this mostly because you mention having some GI symptoms and immotility was pretty much my biggest GI complaint and was definitely improved once i was off gluten. It might not be the only GI issue going on with you... but it might potentially be a small piece?
Please make sure that your Dr. runs a complete antibody panel. This will include the ANA again and all of the ANA subsets as well as other antibodies common in most autoimmune conditions. Probably would not hurt to get a thyroid panel as well and pretty much what thyroidian got as well (CBC, liver panel, etc) . I'm actually shocked that you haven't had these tests ordered and repeated considering your family history of autoimmune disease!
Goodluck, and remember that a great deal of us that suffer from autoimmune diseases have been through the wringer!!!
Point is that it can be a VERY frustrating path when dealing with something with so many variables as autoimmune... but stick with it!!
Another thing I wanted to throw out there is that it seems as though a lot of people that deal with autoimmune problems also seem to have some level of gluten intolerance if not straight up Celiac. I never seemed to have symptoms of gluten intolerence but since my brother has celiac I sent my DNA and other samples for testing and I found out that I did indeed have it. Going GF certainly helped my regularity and digestion. Also it seems there is a link between a couple of the genes that predisposes you to gluten intolerence (HLA-DQ2) and other autoimmune conditions. I mention this mostly because you mention having some GI symptoms and immotility was pretty much my biggest GI complaint and was definitely improved once i was off gluten. It might not be the only GI issue going on with you... but it might potentially be a small piece?
Please make sure that your Dr. runs a complete antibody panel. This will include the ANA again and all of the ANA subsets as well as other antibodies common in most autoimmune conditions. Probably would not hurt to get a thyroid panel as well and pretty much what thyroidian got as well (CBC, liver panel, etc) . I'm actually shocked that you haven't had these tests ordered and repeated considering your family history of autoimmune disease!
Goodluck, and remember that a great deal of us that suffer from autoimmune diseases have been through the wringer!!!
I was thinking of going to see a geneticist. From what I hear they are the doctors that perform the most thorough exams and if any, are the doctors that really listen to you and try to find out what's wrong. I have another rheumotologist appointment on monday and see my primary on Tuesday, so I'll see how they go. What I really want and need is an orthepedist who can do nerve conduction studies on my spine, as that could be the source of many problems, including my GI immobility.
I've never heard of a consultant before, could you tell me what that is? I would feel a lot better if I had someone on my team, for as it stands right now I go into appointments alone as a 23 year old RN and to doctors they think I'm either drug seeking or trying to diagnose myself, as if I'm a hypochondriac. I noticed back when I lived in Santa Barbara with my mom, doctors took me more seriosuly when my mom went with me to appointments,
I had a wonderful New Years present. I had to go to the ER as I decided the quality of my life was unacceptable and I needed to get a refill on my pain meds. I got a wonderful doctor, who believed me and was willing to write a whole refill for my prescription. That's never happened to me before. Perhaps I'm just starting to look more worn down and thus believeable.
Anyway, thank you again so much for your posts. It's nice to know someone has been through this too.
Sara
I've never heard of a consultant before, could you tell me what that is? I would feel a lot better if I had someone on my team, for as it stands right now I go into appointments alone as a 23 year old RN and to doctors they think I'm either drug seeking or trying to diagnose myself, as if I'm a hypochondriac. I noticed back when I lived in Santa Barbara with my mom, doctors took me more seriosuly when my mom went with me to appointments,
I had a wonderful New Years present. I had to go to the ER as I decided the quality of my life was unacceptable and I needed to get a refill on my pain meds. I got a wonderful doctor, who believed me and was willing to write a whole refill for my prescription. That's never happened to me before. Perhaps I'm just starting to look more worn down and thus believeable.
Anyway, thank you again so much for your posts. It's nice to know someone has been through this too.
Sara
Hi Sara.
I just wanted to let you know, that it is very good you are advocating for yourself right now, because the doctors who are fobbing you off arent advocating one little.
Infact this story is sounding very much like mine, So dont give up fighting.
Life is very precious, and right now, you are suffering endlessly.
It is a shame, when you are having to spend money to get help outside of the box.
I mean which person would actually want to pay for treatment, or see a doctor, im sure there are better things you could be spending youre money on right now, cant they see this.
It is real help you need.
I really think you should have youre GI issues looked at also, you could have some loops, causing a blockage?
which be causing you to vomit, and cause a considerable amount of pain.
It sounds like you have multiple issues, going on affecting many systems.
If i was you . I would save my money up, and find ONE good specialist, and then pay to see him, and have thorough testing done.
He just might put all the jigsaw pieces together, and find the root of the cause.
When you see multiple consultants like i did, whenever they rule out what they think it is, then they either fob you off , or give you a label,
Then this makes it harder for you to be taken seriously, and they start looking outside the haystack, knowing they will never find whats wrong in the first place.
I would definately start to look for a good consultant, do your homework first, check out there status first, and maybe look at patients reviews, then consider using him.
Let me know how you get on
Nicola
I just wanted to let you know, that it is very good you are advocating for yourself right now, because the doctors who are fobbing you off arent advocating one little.
Infact this story is sounding very much like mine, So dont give up fighting.
Life is very precious, and right now, you are suffering endlessly.
It is a shame, when you are having to spend money to get help outside of the box.
I mean which person would actually want to pay for treatment, or see a doctor, im sure there are better things you could be spending youre money on right now, cant they see this.
It is real help you need.
I really think you should have youre GI issues looked at also, you could have some loops, causing a blockage?
which be causing you to vomit, and cause a considerable amount of pain.
It sounds like you have multiple issues, going on affecting many systems.
If i was you . I would save my money up, and find ONE good specialist, and then pay to see him, and have thorough testing done.
He just might put all the jigsaw pieces together, and find the root of the cause.
When you see multiple consultants like i did, whenever they rule out what they think it is, then they either fob you off , or give you a label,
Then this makes it harder for you to be taken seriously, and they start looking outside the haystack, knowing they will never find whats wrong in the first place.
I would definately start to look for a good consultant, do your homework first, check out there status first, and maybe look at patients reviews, then consider using him.
Let me know how you get on
Nicola
Thank you Nicola for your post, I'm sorry you went through what you did. I swear, the biggest medical mistakes are made nowadays because doctors don't listen to their patients. I feel like I'm the only one advocating for myself, becaujse that's what my career is; advocating for my patient's medical care. It's costing me an arm and a leg but I'm having to see doctor's outside of what my insurance covers to get what I need.
I'm taking laxatives again tonight as my digestive tract has simply stopped working and I'm nauseated and vomitting all the time now, and if they don't work I will just have to go back to the ER for another disimpation, my third in 3 weeks now, because my insurance is taking too long to approve a GI specialist. Maybe at the ER if I explain my situation they can admit me and actually help me, not just temporarily resolve things...
Anyway, thanks again for the support, I will definitely let you know how things go.
Sara
I'm taking laxatives again tonight as my digestive tract has simply stopped working and I'm nauseated and vomitting all the time now, and if they don't work I will just have to go back to the ER for another disimpation, my third in 3 weeks now, because my insurance is taking too long to approve a GI specialist. Maybe at the ER if I explain my situation they can admit me and actually help me, not just temporarily resolve things...
Anyway, thanks again for the support, I will definitely let you know how things go.
Sara
I haven't had many tests or blood work done or seen many good specialists due to the fact that my doctors don't believe me, think I'm a psych case or trying to diagnose myself, as I am a Registered Nurse, and have Medi-Cal insurance (not top-quality doctors).
My old rheumatologist is the one who saw me throughouut my adolescents and first caught my positive ANA. I went through a huge flareup with titers as high as in the 5,000's. She diagnosed me with a lupus-like autoimmune disease but was reluctant to permenantly label me with something as I was so young and she did not want that to prevent me from doing things or getting gfoodx insurance in the future.
I just recently saw a neurologist who did no good for me. My MRI was negative but then I found out that in earlier stages of MS MRIs are negative because lesions have not yet had time to develop, so diagnosis is made through spinal tap. This neurologist did not even ask me what my symtpoms were, he pretty much look at me and dismissed me. Age and outward appearance judgement in my oppinion.
I contacted UCSD MS specialty, who takes Medi-Cal, explained my symptoms, and they said I definitey needed to come in. They are closed until Jan 3 but after that I plan to schedule an appointment.
I am waiting for a GI referral and orthepedist referral to go through. I injured my back severly about 5 years ago which could explain some of the neuro and other symtpoms I'm having if nerves were damaged, but certainly not the horrible joint pain or overwhelming fatigue.
It's hard right now because my insurance limits me to primary doctors. I've tried one who did'nt fight for me, forgot to sen d referrals and who thought I was a drug addict. So I switched to the only other covered provider who is turning out to be the same way. She doesn't believe I am sick or in pain. It's hard because I know if I were 63 years old and walked into her office I would be treated a lot differently but because I'm only 23 she automatically thinks I'm faking and/or drug seeking.
I'm now looking into seeing a geneticist as similar symptoms run in the family. My mom has lupus and thyroid problems, my aunts have thyroid problems and arthritis and other autoimmune diseases, diabetes type 1, etc, GI problems, skeletal problems. I'm just so desperate and can't bear the thought that I'll live the rest of my life this way.
I know what I need, another full blood work up, spinal tap, nerve conduction studies, etc., but I can't suggest that to dtoctors as they get offended that I am trying to do their job. So I have to walk on there dumb as if I don't know anything. Thankfully I have an appointment to see a pain management doctor at the end of this month, so hopefully at least that will be taken care of.
Thank you so much for writing back and your support, this website has helped so much and the people here are so kind.
Sara
My old rheumatologist is the one who saw me throughouut my adolescents and first caught my positive ANA. I went through a huge flareup with titers as high as in the 5,000's. She diagnosed me with a lupus-like autoimmune disease but was reluctant to permenantly label me with something as I was so young and she did not want that to prevent me from doing things or getting gfoodx insurance in the future.
I just recently saw a neurologist who did no good for me. My MRI was negative but then I found out that in earlier stages of MS MRIs are negative because lesions have not yet had time to develop, so diagnosis is made through spinal tap. This neurologist did not even ask me what my symtpoms were, he pretty much look at me and dismissed me. Age and outward appearance judgement in my oppinion.
I contacted UCSD MS specialty, who takes Medi-Cal, explained my symptoms, and they said I definitey needed to come in. They are closed until Jan 3 but after that I plan to schedule an appointment.
I am waiting for a GI referral and orthepedist referral to go through. I injured my back severly about 5 years ago which could explain some of the neuro and other symtpoms I'm having if nerves were damaged, but certainly not the horrible joint pain or overwhelming fatigue.
It's hard right now because my insurance limits me to primary doctors. I've tried one who did'nt fight for me, forgot to sen d referrals and who thought I was a drug addict. So I switched to the only other covered provider who is turning out to be the same way. She doesn't believe I am sick or in pain. It's hard because I know if I were 63 years old and walked into her office I would be treated a lot differently but because I'm only 23 she automatically thinks I'm faking and/or drug seeking.
I'm now looking into seeing a geneticist as similar symptoms run in the family. My mom has lupus and thyroid problems, my aunts have thyroid problems and arthritis and other autoimmune diseases, diabetes type 1, etc, GI problems, skeletal problems. I'm just so desperate and can't bear the thought that I'll live the rest of my life this way.
I know what I need, another full blood work up, spinal tap, nerve conduction studies, etc., but I can't suggest that to dtoctors as they get offended that I am trying to do their job. So I have to walk on there dumb as if I don't know anything. Thankfully I have an appointment to see a pain management doctor at the end of this month, so hopefully at least that will be taken care of.
Thank you so much for writing back and your support, this website has helped so much and the people here are so kind.
Sara
Hi.
It sounds like you have been having a real hardtime, and that your symptoms are going unheard, and you are struggling to get a proper accurate diagnosis.
Firstly may i ask what was the ANA titre level, and what pattern was it? This would be a good indicator to what illness you may be battling.
Secondly have you had anymore bloodtests done ? and if so what were they , and the levels.
Also Lupus , and MS, can both produce the same symptoms.
Have you seen a rheumy or a neurologist for your issues?
The main issue here is to acquire an accurate diagnosis, so you get the appropiate treatment to treat the illness. Either being Lupus or MS.
Have you seen a neurologist? have you had a lumbar puncture? have you had a brain and spine MRI?
The sooner you get a diagnosis, then the quicker you will get treatment, which will enable you to manage your symptoms better,
I hope you can get this sorted soon, have you got any appointments for a consultant?
You need either a rheumy , or a neuro, both of these will be able to help you.
The main part is finding a good one.
I was in your boat for many years, and ended up suffering endlessly due to being fobbed off.
To the point of the damage which was done , has now become irreversible, had i would have had a sooner diagnosis, and proper treatment, i wouldnt be in the boat i am in now.
So i know were you are coming from.
Find yourself a good consultant and go and find your answers.
Take care
Nicola
It sounds like you have been having a real hardtime, and that your symptoms are going unheard, and you are struggling to get a proper accurate diagnosis.
Firstly may i ask what was the ANA titre level, and what pattern was it? This would be a good indicator to what illness you may be battling.
Secondly have you had anymore bloodtests done ? and if so what were they , and the levels.
Also Lupus , and MS, can both produce the same symptoms.
Have you seen a rheumy or a neurologist for your issues?
The main issue here is to acquire an accurate diagnosis, so you get the appropiate treatment to treat the illness. Either being Lupus or MS.
Have you seen a neurologist? have you had a lumbar puncture? have you had a brain and spine MRI?
The sooner you get a diagnosis, then the quicker you will get treatment, which will enable you to manage your symptoms better,
I hope you can get this sorted soon, have you got any appointments for a consultant?
You need either a rheumy , or a neuro, both of these will be able to help you.
The main part is finding a good one.
I was in your boat for many years, and ended up suffering endlessly due to being fobbed off.
To the point of the damage which was done , has now become irreversible, had i would have had a sooner diagnosis, and proper treatment, i wouldnt be in the boat i am in now.
So i know were you are coming from.
Find yourself a good consultant and go and find your answers.
Take care
Nicola
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First of all you need a good consultant, and one what takes you seriously...
In that i mean if you feel you are being messed around in anyway, or not taken seriously then you need to move on and find another doctor , and one what listens.
Do not waste your time with doctors who will not look for a cause to your symptoms.
I did learn in my experience, that once you are given a label, then it is very hard to lose.
But i have found one thing in my life which helped me to carry on and that is KNOWLEDGE IS POWER.
I was misdiagnosed for 12 years with MS...
I also have Graves disease also, and for all the 12 years i have been poorly, i was always told it was my MS which was the culprit.
I had numerous neurological symptoms, as well as systematic symptoms, from headaches,fatigue, to joint pains, and muscle aches, GI problems, rashes, etc.
In 2008, they said to me they didnt think i had MS,, and because the neuro was to lazy to look for an accurate diagnosis, wanted to label me with medically unexplained syndrome.
This was a shock, as then i felt like i was a hypochondriac,, and because i didnt have a diagnosis, i was fobbed off left right and centre.
This is when i took my own health into my own hands, and set about my quest to find the real cause.
I started at the root of my problems, and worked through.
I knew that whatever i had caused multiple problems in different places throughout my body, and this was systematic.
So i started with antibodies, CBC, LFT, Kidney function, ESR, etc..
I also tested immunoglobulins,,
Then bingo, i found out i was anticardiolipin antibody positive. This led me to the lupus clinic, and what i had be suffering from for 12 years was not MS, but the Antiphospolipid Syndrome/ Hughes syndrome. Which can actually mimic MS.
Even down to the Transverse Myelitis, i had suffered with 12 years ago.
My moto to you, is never give up looking for your answers, and there will be some to be found, its just finding a good doctor which can link all your problems together.
You definately need a neuro, and maybe a good rheumy.
I would say you need a good bloodwork profile doing, along with immunology antibodies to check for auto-immune.
I would also say if you think this maybe MS, you need a lumbar puncture to check for O-Bands.
Auto-immune diseases, can very much run in families, so a good family history is knowledgeable.
Also when you see these doctors, dont be afraid about saying anything, tell them how it is., and how this is affecting your life. If they dont believe you then say you will have a psychological evaluation done, but after you have had it and passed it you will not be walking out of that hospital without an accurate diagnosis. Let them know.
I hope when you see the pain management doctor he can ease some of your pain problems, but remember, you need to know what is causing that pain in the first place..
The body produces pain when there is something wrong, that is your bodies way off letting you know,
I am wishing you all the best, and i hope you can sort this out soon, just so you can get treated appropiately.
Stay strong, remember if you give up, then you have nothing to fight for.
Knowledge is Power
Good luck. Please keep me posted on how you get on
Nicola.