Discussions By Condition: I cannot get a diagnosis.

Help!!! Could I Have Kidney Disease???

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: pamemedusa
  • December 19, 2006
  • 05:11 AM

PLEASE HELP!!! I AM IN SEVERE PAIN RIGHT NOW & DO NOT KNOW WHAT TO DO!!!

I have been to several doctors & have had several tests (Urologists, Reproductive Endocrinologists, Infection Disease, Gastroenterologist, Cardiologist, Nephrologist, Endocrinologist, etc.)

I have been having several ongoing problems since I was around 17-19 years old & they have progressively gotten worse & I honestly do not know if all my symptoms are related or not. I am now 32 years old. I also have had 2 miscarriages. Most of the problems that I have I do not even tell to anyone, because I feel like they are insignificant. But then again they might be a clue as to what is wrong with me.

I found out that I had Stage II Endometriosis. I had Laser Ablation which helped, but did not get rid of my problems. They started returning 2 months later. I then went & had Excision Endometriosis surgery with a very good surgeon in Atlanta, Georgia. I thought everything was fine after that. I assumed all my bladder problems were related to the Endo. I guess I was wrong. That surgeon told me that I now have Interstitial Cystitis & I need to get that treated.

My symptom list:

1) Tingling in my hands from time to time (If I have anything in my hand I drop it & it breaks).
2) Swelling in my feet from time to time
3) Severe fatigue (Even if I sleep & sleep I still do not feel rested)
4) Nausea that comes & goes ALL the time
5) Hair loss
6) Joint & muscle spasms in my legs
7) Severe itching at times (Sometimes all over my body, but sometimes just in specific areas without a rash at all)
8) Headaches that comes & go
9) Very bad Urine retention
10) Leaking urine at various times all throughout the day
11) Extreme forgetfulness, concentration & focusing problems
12) My bladder does not let me know that I have to pee. Sometimes I drink all day long & do not know that I have to pee until I start hurting real bad in my pubic area
13) Severe sharp pains in my right & left side that come & go (They are horrible stabbing pains)
14) Chronic middle back pain that flares out into both my right & left side that does not go away (This has been going on for about a week). It is just a nagging constant deep pain
15) Hormonal problems (Hot flushes, Irratibility rotating with bouts of crying)
16) Chills from time to time
17) Blood in my urine
18) PAIN, PAIN & MORE PAIN
19) ETC.

SURGERIES THAT I HAVE HAD DONE:

URODYNAMICS STUDY
CYSTOSCOPY
URETHRAL DILATION
LASER ABLATION FOR ENDOMETRIOSIS
EXCISION SURGERY FOR ENDOMETRIOSIS
ENDOSCOPY & COLONOSCOPY (Negative)

PAST TESTING:

T4 (All negative)
T3
TSH
ACTH
LUPUS TEST
EPSTEIN BARR TEST
CORTISOL
FSH
LSH

TESTS THAT I HAD JUST A FEW DAYS AGO:

CBC (Everything normal except always high in MCHC 34.4)
24 HR URINE (Creatinine was low 1,044.75)
Creatine Serum (Negative .6)
GFR (Negative 114)
Basic Metabolic Panel (Chloride was High 108 & Direct Bilirubin was high .24)

Urinalysis:
Protein (Trace amounts---I have never had protein before & I have at least 2 Urinalysis every month in the ER)
Blood (Small--did not give an amount)
Urine RBC (High 5)
Amorphous Crystals (Occasional---never had before either)
Urine mucus (Occasional---never had before either)

Urinalysis said that they were unable to determine presence of bacteria due to amorphous crystals in urine

I ALSO HAD:

CT SCAN (Showed nothing but a 4.8 cyst on my left possible cyst on left ovary)
KIDNEY ULTRASOUND (showed nothing abnormal)


I talked to the doctor's office & they said that the doctor (nephrologist) said everything on my tests look fine. I told them that I am hurting & can barely go to work. They are supposed to get back with me 2morrow.

What do I do????

Should I have them do more testing???


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7 Replies:

  • antiphosphilphid antibody syndrome!!!!!it has many of the same symptoms u are having such as the tingling in hands, fatigue, muscle spasms. it has a lot of the same symtoms as lupus!!and it causes you to have miscarriges!!!!! I would recommend you to go to a reumotologist (sp) and get tested!
    Anonymous 42789 Replies
    • December 19, 2006
    • 11:45 AM
    • 0
    Flag this Response
  • I know this sounds weird. I just checked & saw your response right now at 11:13PM. I completely forgot that I posted this E-mail. I have been researching the net tonight for hours. The funny thing is I looked at Lupus & thought I might have the beginnings of it (but was not sure). My symptoms could match so many things. But, then I got to thinking & I remembered that my dads father has Lupus, Rheumatoid Arthritis & Sjogrens Syndrome. I know these Autoimmune problems are inherited. I will call tomorrow when I get to work & try to get an appointment with a Rheumatologist. Thanks for the input.
    Anonymous 42789 Replies
    • December 21, 2006
    • 04:16 AM
    • 0
    Flag this Response
  • I got to thinking about it furthur though. I went to an Infectious disease doctor about a year ago & he did testing for Lupus & said I was fine. I can try to get those tests results though. Is there certain testing that they have to do to get a definite diagnosis? He just did a bunch of blood work.Could it show up with a flare up & then not show up other times. Would it show up all the time on the blood tests with something like that?
    Anonymous 42789 Replies
    • December 21, 2006
    • 04:28 AM
    • 0
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  • you can test negitive for lupus one year, but then start developing the symtoms and develop the antibody for it then test positive for it the next year. The antihposphilphid antibody syndrome is a specific bloodtest though! It is very unlikely they tested for it unless you where having some type of symtoms. Some hospitals dont even carry the testing requirred for it. But you have the exact symtoms for it! Even if you dont want to go to the doctor to get tested, just start a regiment of bayers baby asprin or regular asprin. It is inherited and with the symtoms you are having I would definitly go to a rheumotologist!!!
    Anonymous 42789 Replies
    • December 21, 2006
    • 07:26 PM
    • 0
    Flag this Response
  • I checked all the tests I had done & they did not test for this one (even though they did several other tests---some of which I do not even know what they were for). I am in the process of making an appointment with a Rheumatologist. I have one insurance now & my employer will switch to a different insurance next year (that is why I am waiting at the moment---it is hard finding a Rheumatologist that takes both insurances). And, I have very little time to miss from work. It would be nice to find doctors that work after hours or on weekends. It sucks that we have to take so much time from our work (& NEVER get to take any vacation time) to go to doctor's appointments & have testing to find out what is wrong with us.Thanks again & I will keep you posted on what the Rheumotogist tells me.
    Anonymous 42789 Replies
    • December 27, 2006
    • 00:57 AM
    • 0
    Flag this Response
  • I have been searching the internet for months, it seemed I was the only one having the same problems that you have. I had an ablation done January 2008. Ever since i always have blood in my urine. No one seems to listen. I am 32 years old and feel like i have been losing my mind. I don't know where else to turn. I have had every one of the test that you have had done.
    Anonymous 42789 Replies
    • January 4, 2009
    • 11:25 PM
    • 0
    Flag this Response
  • PLEASE HELP!!! I AM IN SEVERE PAIN RIGHT NOW & DO NOT KNOW WHAT TO DO!!! I have been to several doctors & have had several tests (Urologists, Reproductive Endocrinologists, Infection Disease, Gastroenterologist, Cardiologist, Nephrologist, Endocrinologist, etc.) I have been having several ongoing problems since I was around 17-19 years old & they have progressively gotten worse & I honestly do not know if all my symptoms are related or not. I am now 32 years old. I also have had 2 miscarriages. Most of the problems that I have I do not even tell to anyone, because I feel like they are insignificant. But then again they might be a clue as to what is wrong with me. I found out that I had Stage II Endometriosis. I had Laser Ablation which helped, but did not get rid of my problems. They started returning 2 months later. I then went & had Excision Endometriosis surgery with a very good surgeon in Atlanta, Georgia. I thought everything was fine after that. I assumed all my bladder problems were related to the Endo. I guess I was wrong. That surgeon told me that I now have Interstitial Cystitis & I need to get that treated. My symptom list: 1) Tingling in my hands from time to time (If I have anything in my hand I drop it & it breaks).2) Swelling in my feet from time to time3) Severe fatigue (Even if I sleep & sleep I still do not feel rested)4) Nausea that comes & goes ALL the time5) Hair loss6) Joint & muscle spasms in my legs7) Severe itching at times (Sometimes all over my body, but sometimes just in specific areas without a rash at all)8) Headaches that comes & go9) Very bad Urine retention10) Leaking urine at various times all throughout the day11) Extreme forgetfulness, concentration & focusing problems12) My bladder does not let me know that I have to pee. Sometimes I drink all day long & do not know that I have to pee until I start hurting real bad in my pubic area13) Severe sharp pains in my right & left side that come & go (They are horrible stabbing pains)14) Chronic middle back pain that flares out into both my right & left side that does not go away (This has been going on for about a week). It is just a nagging constant deep pain15) Hormonal problems (Hot flushes, Irratibility rotating with bouts of crying)16) Chills from time to time17) Blood in my urine18) PAIN, PAIN & MORE PAIN19) ETC. SURGERIES THAT I HAVE HAD DONE: URODYNAMICS STUDYCYSTOSCOPYURETHRAL DILATIONLASER ABLATION FOR ENDOMETRIOSISEXCISION SURGERY FOR ENDOMETRIOSISENDOSCOPY & COLONOSCOPY (Negative) PAST TESTING: T4 (All negative)T3TSHACTHLUPUS TESTEPSTEIN BARR TESTCORTISOLFSHLSH TESTS THAT I HAD JUST A FEW DAYS AGO: CBC (Everything normal except always high in MCHC 34.4)24 HR URINE (Creatinine was low 1,044.75)Creatine Serum (Negative .6)GFR (Negative 114)Basic Metabolic Panel (Chloride was High 108 & Direct Bilirubin was high .24) Urinalysis:Protein (Trace amounts---I have never had protein before & I have at least 2 Urinalysis every month in the ER)Blood (Small--did not give an amount)Urine RBC (High 5)Amorphous Crystals (Occasional---never had before either)Urine mucus (Occasional---never had before either) Urinalysis said that they were unable to determine presence of bacteria due to amorphous crystals in urine I ALSO HAD: CT SCAN (Showed nothing but a 4.8 cyst on my left possible cyst on left ovary)KIDNEY ULTRASOUND (showed nothing abnormal) I talked to the doctor's office & they said that the doctor (nephrologist) said everything on my tests look fine. I told them that I am hurting & can barely go to work. They are supposed to get back with me 2morrow. What do I do???? Should I have them do more testing??? I know this is an old post but if you see this and are still looking for answers look into Lyme Disease. Sounds exactly like Chronic Lyme Disease. Testing is not accurate so you need to find a specialist called a Lyme Literate Doctor. Google Turn the Corner Foundation for help with that. Also google Lyme Disease Association and read info on their website. My entire family has Lyme and I am an awareness advocate.
    Anonymous 42789 Replies Flag this Response
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