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Old 06-13-2013, 09:53 AM   #1
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Join Date: Jun 2011
Location: United States
Posts: 24
somebody84 HB User
Undiagnosed . Do I give up?

I've reached a point in my life where I'm not sure if the fight is worth it. For years I've been searching for answers to no avail.

The fatigue started back in high-school and my symptoms began slowly picking up after I had my first baby 9 years ago. (Ended up needed 4 blood transfusions after delivery for myself) I didn't start searching for answers hard core until about 4-5 years ago. I've had my new doctor for 3 years, 2 rheumatologists, I've seen a neuro, amongst other doctors for different symptoms and am currently seeing a ENT.

My symptoms are:

fatigue (all the time)
raynaud's
headaches
joint pain
muscle aches
stomach pain (gall-bladder has been removed)
random itching
brittle nails (new)
ear pain (new)
swollen lymph nodes in neck (6 months now, new symptom)
hair falls out (in tub, in bathroom, all over pillows, etc, new)
chest pain
shortness of breath
right bundle branch block (cardio says nothing to worry about, probably born with it)
dizziness
brain fog/memory problems/forgetfulness
nausea
bruising
random rashes
swollen finger and toes time to time
and the list goes on....

I've had different tests done including, ana, lupus, sed, blood count, thyroid etc.

Sed/ESR has come back high once, my magnesium, potassium, and calcium come back low from time to time, glucose has been high once (fluke I assume) and other than my most recent blood work (at the ER) everything seems to check out.

I had a biopsy on the lymph node which came back inconclusive and now I have to go back to the ENT again.

I went to the ER for really bad stomach pains on Monday (I could barely move) they did a CT scan which checked out okay - except they couldn't find my appendix but they told me it was fine?? My labs came back off:

WBC 14.3 H
Absol Neutro 13.0 H
% Neutro 90.7 H
% Lymphs 4.7 L
Potassium 3.3 L
Calcium 8.0 L

Everything else was within range. The ER doctor said its probably some sort of infection but they didn't think it required antibiotics.

The next day I did a follow up my doctor - who has been fantastic up until this point. He states the lab points to a possible bacteria infection but didn't want to put me on antibiotics w/o knowing what it is. When I explained to him I just finished a heavy duty antibiotic and predisone for the lymph nodes(which didn't help) he told me to just speak to the gastrologist regarding the ER visit.

When I asked him if he could recommend a doctor who could figure out the cause of my symptoms - he cut me off and said the ER isn't going to figure out whats wrong with me and I shouldn't have gone for the stomach pain (basically). When I told him I meant I want a doctor who could go off ALL my symptoms because so far no-one could figure it out and he stated that "people like me will come in looking for answers for years and won't find anything." "people like me are looking for a medical answer and there isn't one." "people like me with my symptoms and no answers often point to something psychological and although he could sit and chit chat with me all day its not his job and he isn't that kind of doctor." Shocked and dumbfounded I was on the verge of tears because I couldn't understand why he was acting this way, he asked if I was depressed. I told him no and he asked if I was sure and I told him yes. He asked if my lady parts checked out okay, and I said yes, he said are you sure? And I said yes. He stated that I should so happy that they haven't found out what was wrong with me and its like I wanted him to tell me I had a "tumor" and to be careful what I wish for?!

I told him no, I don't want anything wrong with me, but clearly but body says otherwise because I should not feel like this day in and day out and he told me I was clearly anxious and to consider a anti-depressant. I told him I've tried those from the "fibro" diagnosis, which I don't even have the trigger points (one reason I stopped going to my rhuemy, I got tired of having medicine thrown at me for something I didn't think I had), and the doctor stated again that he sees people like me all the time who get upset when there is no answer and that it's probably related to my stress, or depression and underlying anxiety. Then the only smart thing he said at that point was to have the gastrologist test me for cealic (possibly mocking) and he told me to keep a journal and see if I can make connections with anything in my life, like my menstrual cycle. Then he told me just maybe the "disease" is emgering through my lymph nodes finally or maybe its all psychological. He said he wasn't going to bother re-running my tests for my thyroid, ana, or lupus because he felt it would be a waste of my insurance money (even though those tests were ran almost a year ago)

Here I am in the doctors office of a doctor I was recommending to everyone, in tears. I left so upset. I wanted to cancel my follow up with the ENT but my boyfriend convinced me not to, as I still need to make sure my lymph node is nothing serious.

I'm so lost. I'm so scared to make anymore appts. I feel like I'm crazy. I'm not depressed, these are real problems I have had for a very long time. I don't understand. I don't know what to do. I decided to watch my diet, and possibly save up for my own tests, but I just feel so defeated. If my doctor can't help me, then what?

Last edited by somebody84; 06-13-2013 at 09:56 AM.

 
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Old 06-15-2013, 02:23 PM   #2
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Join Date: Jan 2013
Location: Michigan
Posts: 659
Terlin HB User
Re: Undiagnosed . Do I give up?

Quote:
Originally Posted by somebody84 View Post
I've reached a point in my life where I'm not sure if the fight is worth it. For years I've been searching for answers to no avail.

The fatigue started back in high-school and my symptoms began slowly picking up after I had my first baby 9 years ago. (Ended up needed 4 blood transfusions after delivery for myself) I didn't start searching for answers hard core until about 4-5 years ago. I've had my new doctor for 3 years, 2 rheumatologists, I've seen a neuro, amongst other doctors for different symptoms and am currently seeing a ENT.

My symptoms are:

fatigue (all the time)
raynaud's
headaches
joint pain
muscle aches
stomach pain (gall-bladder has been removed)
random itching
brittle nails (new)
ear pain (new)
swollen lymph nodes in neck (6 months now, new symptom)
hair falls out (in tub, in bathroom, all over pillows, etc, new)
chest pain
shortness of breath
right bundle branch block (cardio says nothing to worry about, probably born with it)
dizziness
brain fog/memory problems/forgetfulness
nausea
bruising
random rashes
swollen finger and toes time to time
and the list goes on....

I've had different tests done including, ana, lupus, sed, blood count, thyroid etc.

Sed/ESR has come back high once, my magnesium, potassium, and calcium come back low from time to time, glucose has been high once (fluke I assume) and other than my most recent blood work (at the ER) everything seems to check out.

I had a biopsy on the lymph node which came back inconclusive and now I have to go back to the ENT again.

I went to the ER for really bad stomach pains on Monday (I could barely move) they did a CT scan which checked out okay - except they couldn't find my appendix but they told me it was fine?? My labs came back off:

WBC 14.3 H
Absol Neutro 13.0 H
% Neutro 90.7 H
% Lymphs 4.7 L
Potassium 3.3 L
Calcium 8.0 L

Everything else was within range. The ER doctor said its probably some sort of infection but they didn't think it required antibiotics.

The next day I did a follow up my doctor - who has been fantastic up until this point. He states the lab points to a possible bacteria infection but didn't want to put me on antibiotics w/o knowing what it is. When I explained to him I just finished a heavy duty antibiotic and predisone for the lymph nodes(which didn't help) he told me to just speak to the gastrologist regarding the ER visit.

When I asked him if he could recommend a doctor who could figure out the cause of my symptoms - he cut me off and said the ER isn't going to figure out whats wrong with me and I shouldn't have gone for the stomach pain (basically). When I told him I meant I want a doctor who could go off ALL my symptoms because so far no-one could figure it out and he stated that "people like me will come in looking for answers for years and won't find anything." "people like me are looking for a medical answer and there isn't one." "people like me with my symptoms and no answers often point to something psychological and although he could sit and chit chat with me all day its not his job and he isn't that kind of doctor." Shocked and dumbfounded I was on the verge of tears because I couldn't understand why he was acting this way, he asked if I was depressed. I told him no and he asked if I was sure and I told him yes. He asked if my lady parts checked out okay, and I said yes, he said are you sure? And I said yes. He stated that I should so happy that they haven't found out what was wrong with me and its like I wanted him to tell me I had a "tumor" and to be careful what I wish for?!

I told him no, I don't want anything wrong with me, but clearly but body says otherwise because I should not feel like this day in and day out and he told me I was clearly anxious and to consider a anti-depressant. I told him I've tried those from the "fibro" diagnosis, which I don't even have the trigger points (one reason I stopped going to my rhuemy, I got tired of having medicine thrown at me for something I didn't think I had), and the doctor stated again that he sees people like me all the time who get upset when there is no answer and that it's probably related to my stress, or depression and underlying anxiety. Then the only smart thing he said at that point was to have the gastrologist test me for cealic (possibly mocking) and he told me to keep a journal and see if I can make connections with anything in my life, like my menstrual cycle. Then he told me just maybe the "disease" is emgering through my lymph nodes finally or maybe its all psychological. He said he wasn't going to bother re-running my tests for my thyroid, ana, or lupus because he felt it would be a waste of my insurance money (even though those tests were ran almost a year ago)

Here I am in the doctors office of a doctor I was recommending to everyone, in tears. I left so upset. I wanted to cancel my follow up with the ENT but my boyfriend convinced me not to, as I still need to make sure my lymph node is nothing serious.

I'm so lost. I'm so scared to make anymore appts. I feel like I'm crazy. I'm not depressed, these are real problems I have had for a very long time. I don't understand. I don't know what to do. I decided to watch my diet, and possibly save up for my own tests, but I just feel so defeated. If my doctor can't help me, then what?
I feel for you I have whole body pain and wierd symptoms and now can't drive hardly walk or sit with abdominal pain and urine retention burning Hands and feet groin head presure and numbness ears ringing on and on they have my family convinced its anxiety and depression causing this I feel it's the meds that is doing it they want to put me in a hospital for iv treatment with pshyc drugs very confused ready to give up . I don't even sweat no more fibro pain and more. I'll pray for you to

 
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Old 06-15-2013, 03:17 PM   #3
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Location: Chester, VA
Posts: 1,730
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Re: Undiagnosed . Do I give up?

Hi, that dr sounds like a jerk. There are ways to rate drs too. I know where you're coming from, I just got yelled at for the umteenth time by my hubby for laying in bed. Mine started last year with severe nausea and diarrhea, fatgue too.

He's all mad cuz he opened our pool and I'm not getting in it. Yeah that's what I need to get overheated. I'm trying not to get nauseous today since I was up most of the night with it.

I can't drive either. May fall aslerp. I have a 96 yo mom who is sick and my brother is worrying me about going overthere.

I wish I could. I know if I could go ove rthere everyday she would get stronger because I would push her.

Oh well I'm not supposed to be talking about me. I just wanted you to know I knew where you were coming from. I'm going to get a second opinion at a big teaching hospital. One of the best gadtro drs. Maybe you should try something similar, I was told one time all specialists are supposed to know a certain amount about other things they are trained so.

I have a notebook with all my tests and results, symptoms and such. Have you tried going gluten free yet? I did that for 3 months and then was tested by gastro dr.

If you decide to try it, its best to read up on it first, I bought thst book "gluten free for dummies" it was easy.

Best of kuck to you let us know how things turn out, cathy

 
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Old 06-18-2013, 10:54 AM   #4
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Location: Ada, OK USA
Posts: 2
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Re: Undiagnosed . Do I give up?

You are not crazy, I we all had the same type of experince until a rheumy finally told me I had Lupus. Actually a Neuro ran some tests on me and told
me I had cluster headaches and had run extra tests on me and informed me that I had Lupus. I knew, but was in the Army and newly divorced with two little boys and didn't want the Army to know so I had traveled off base to a civilian Dr. to try to find out why my body had become a time bomb. He sent
me to a Rheumy and they looked at the tests and confirmed the news. For
years I couldn't tell the military I had Lupus or I would have been kicked out. 28 years later I am a survivor. You have to do your research and never let ONE Dr. deter you from the answer you need and deserve. Lupus is not that easy to determine or a lot more people would know a lot earlier they have it. Mine is complicated by epilpesy, Fibro, AS, CFS, RA, OA, & OS. I still consider myself a survivor, I also am a Cancer Survivor. Life is only as wonderful as you make it. I wish you the best in journey, do not quit.

 
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