Discussions By Condition: I cannot get a diagnosis.

Years of ***l..just ready to be well.

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: toyoung
  • November 12, 2009
  • 04:33 AM

Hello!
I am a 22y/o female. 5'4", 170lbs. Caucasian/European descent.

This all started when I was around 16 years old. It started with Joint pain in my knees. Multiple doctors attributed it to growth, and sent me on my way. As I got older, the pain got worse, and has spread to most joints in my body. Knees, hips, ankles, shoulders, wrists and fingers. I have had multiple RA and Arthritis panels drawn, and all were negative.
The depression set in in 2006..not severe, but enough to effect my daily life. I was prescribed prozac 20mg bid, which helped.
Also in 2006, I developed a moderate/severe pain in my left side..directly under my ribs, in the spleen area(sometimes wraps around to my back) It was/is always present, and sometimes flares. This pain landed me in the ER many nights. I was eventually diagnosed with a severe Mono infection and they attributed the spleen area pain to splenomegaly from the Mono. Problem is, the pain has never gone away. I ended up having an Appendectomy in June 2007, in the hopes that it would relieve some of my abdominal discomfort. It didn't.
I then started to experience some numbness/lack of circulation in my feet. Some of my toes and the balls of my feet would turn a white/yellow color, and I would lose all feeling, except a tingling. This is ongoing. When I brought it up to my physician, she said that it is probablly just a bit of Raynaud's.
While still experincing the left side pain/raynaud's, I had a severely swollen Left tonsil. I had a strep infection that went undetected for so long, that I developed Rheumatic fever. Thank goodness it was caught before it caused any long term heart damage. I tested positive for strep for the 6th time, and I was sent for a Tonsillectomy.
Not knowing where to go next, my GP sent me to a Urogynecologist. She diagnosed me with Interstitial Cystitis (through cystoscopy) and Endometriosis. During a laprascopic examination, I had laser ablation of the endometriosis, and release of abdominal adhesions. None of these surgeries have relieved my chronic left side pain, or any of my other symptoms. I was also given a depo-medrol/lidocaine injections in my left flank that did not relieve any of the pain.

Other tests that I have had done are below;
Kidney/Liver function panels: Normal
24 hour free urine Cortisol: Normal
Lyme test: Negative
Vitamin D: Low- Placed on 1,000 units daily..has not helped.
Endoscopy: 2 biopsies taken. Negative biopsies, negative for H. Pylori, Negative for Celiac's.
5hiaa 24 hr Urine test for Carcinoid syndrome: Negative.
Multiple RA/Arthritis panels: Negative
A1C: Negative for Diabetes

My other symptoms:
Weight gain: 35-45lbs over 18 months, mostly in abdomen
Left wrist pain: described much like carpal tunnel pain
Diarrhea/constipation on and off
TMJ like symptoms: Severe pain in Jaw, muscle relaxers didn't help
Insomnia
Large, red/purple Striae on abdomen
Raynaud's (tingling, pins and needles, cold) in feet
Lower GI bleed (03/08/09)
Loss of night vision
Headaches
Muscle pain
Increased hair growth
Change in bite (dental)
Nipple Discharge (sometimes milky in color..many times a greenish/black)
ALWAYS thirsty
No sex drive
Random low grade fevers
And most recently, Severe back pain right at the level of my lowest ribs, and neck pain.


I have seen Internal med, Urogynecology, GI, Chiropractic/acupuncture, and ENT physicians.
I feel like they all focus soley on the problem that relates to their specialty, and fail to look at the whole picture. I need to find the root of this problem, before it completly takes over my entire life.
Thank you for taking the time to read this, I know it is a lot...try living it! :(

Reply Flag this Discussion

7 Replies:

  • Hello! I am a 22y/o female. 5'4", 170lbs. Caucasian/European descent. This all started when I was around 16 years old. It started with Joint pain in my knees. Multiple doctors attributed it to growth, and sent me on my way. As I got older, the pain got worse, and has spread to most joints in my body. Knees, hips, ankles, shoulders, wrists and fingers. I have had multiple RA and Arthritis panels drawn, and all were negative. The depression set in in 2006..not severe, but enough to effect my daily life. I was prescribed prozac 20mg bid, which helped. Also in 2006, I developed a moderate/severe pain in my left side..directly under my ribs, in the spleen area(sometimes wraps around to my back) It was/is always present, and sometimes flares. This pain landed me in the ER many nights. I was eventually diagnosed with a severe Mono infection and they attributed the spleen area pain to splenomegaly from the Mono. Problem is, the pain has never gone away. I ended up having an Appendectomy in June 2007, in the hopes that it would relieve some of my abdominal discomfort. It didn't. I then started to experience some numbness/lack of circulation in my feet. Some of my toes and the balls of my feet would turn a white/yellow color, and I would lose all feeling, except a tingling. This is ongoing. When I brought it up to my physician, she said that it is probablly just a bit of Raynaud's. While still experincing the left side pain/raynaud's, I had a severely swollen Left tonsil. I had a strep infection that went undetected for so long, that I developed Rheumatic fever. Thank goodness it was caught before it caused any long term heart damage. I tested positive for strep for the 6th time, and I was sent for a Tonsillectomy. Not knowing where to go next, my GP sent me to a Urogynecologist. She diagnosed me with Interstitial Cystitis (through cystoscopy) and Endometriosis. During a laprascopic examination, I had laser ablation of the endometriosis, and release of abdominal adhesions. None of these surgeries have relieved my chronic left side pain, or any of my other symptoms. I was also given a depo-medrol/lidocaine injections in my left flank that did not relieve any of the pain. Other tests that I have had done are below;Kidney/Liver function panels: Normal24 hour free urine Cortisol: NormalLyme test: NegativeVitamin D: Low- Placed on 1,000 units daily..has not helped.Endoscopy: 2 biopsies taken. Negative biopsies, negative for H. Pylori, Negative for Celiac's. 5hiaa 24 hr Urine test for Carcinoid syndrome: Negative.Multiple RA/Arthritis panels: Negative A1C: Negative for Diabetes My other symptoms:Weight gain: 35-45lbs over 18 months, mostly in abdomenLeft wrist pain: described much like carpal tunnel painDiarrhea/constipation on and offTMJ like symptoms: Severe pain in Jaw, muscle relaxers didn't helpInsomniaLarge, red/purple Striae on abdomen Raynaud's (tingling, pins and needles, cold) in feetLower GI bleed (03/08/09)Loss of night vision HeadachesMuscle painIncreased hair growth Change in bite (dental)Nipple Discharge (sometimes milky in color..many times a greenish/black)ALWAYS thirsty No sex drive Random low grade feversAnd most recently, Severe back pain right at the level of my lowest ribs, and neck pain. I have seen Internal med, Urogynecology, GI, Chiropractic/acupuncture, and ENT physicians. I feel like they all focus soley on the problem that relates to their specialty, and fail to look at the whole picture. I need to find the root of this problem, before it completly takes over my entire life. Thank you for taking the time to read this, I know it is a lot...try living it! :(Try looking into the fibromyalgia syndrome... alot of the nause/headache/muscle pain/ joint pain GI stuff could be attributed to thatcould see a rheumatologist or a neurologist for their opinion on if this is what is going onalso poss hypothyroid or cushings with the random weight gain and thirstgood luck
    Anonymous 42789 Replies
    • November 12, 2009
    • 05:40 AM
    • 0
    Flag this Response
  • Another test I have had that I forgot to mention was a Thyroid panel.--That was normal. I have also had multiple CTs with and without contrast of the abdomen, and they have found nothing abnormal there either. I think my next step is going to be visiting an Endocrinologist/Neuroendocrinologist, but I need a path to follow. Any ideas, or suggestions would be greatly appreciated!! My fear is some sort of Adrenal/Pituitary disorder.. Does anyone have any experience with these?
    toyoung 5 Replies
    • November 12, 2009
    • 08:30 AM
    • 0
    Flag this Response
  • I Have discussed Fibromyalgia and CFS with my physicians. I tried Lyrica, with no relief. I have seen multiple Rheumatologists since I was 16, and have tested negative for Rheumatoid Arthitis, etc. I discussed Hypothyroid with my GP, but Thyroid panels were WNL. (within normal limits):confused:
    toyoung 5 Replies
    • November 12, 2009
    • 09:13 PM
    • 0
    Flag this Response
  • Hello! I am a 22y/o female. 5'4", 170lbs. Caucasian/European descent. This all started when I was around 16 years old. It started with Joint pain in my knees. Multiple doctors attributed it to growth, and sent me on my way. As I got older, the pain got worse, and has spread to most joints in my body. Knees, hips, ankles, shoulders, wrists and fingers. I have had multiple RA and Arthritis panels drawn, and all were negative. The depression set in in 2006..not severe, but enough to effect my daily life. I was prescribed prozac 20mg bid, which helped. Also in 2006, I developed a moderate/severe pain in my left side..directly under my ribs, in the spleen area(sometimes wraps around to my back) It was/is always present, and sometimes flares. This pain landed me in the ER many nights. I was eventually diagnosed with a severe Mono infection and they attributed the spleen area pain to splenomegaly from the Mono. Problem is, the pain has never gone away. I ended up having an Appendectomy in June 2007, in the hopes that it would relieve some of my abdominal discomfort. It didn't. I then started to experience some numbness/lack of circulation in my feet. Some of my toes and the balls of my feet would turn a white/yellow color, and I would lose all feeling, except a tingling. This is ongoing. When I brought it up to my physician, she said that it is probablly just a bit of Raynaud's. While still experincing the left side pain/raynaud's, I had a severely swollen Left tonsil. I had a strep infection that went undetected for so long, that I developed Rheumatic fever. Thank goodness it was caught before it caused any long term heart damage. I tested positive for strep for the 6th time, and I was sent for a Tonsillectomy. Not knowing where to go next, my GP sent me to a Urogynecologist. She diagnosed me with Interstitial Cystitis (through cystoscopy) and Endometriosis. During a laprascopic examination, I had laser ablation of the endometriosis, and release of abdominal adhesions. None of these surgeries have relieved my chronic left side pain, or any of my other symptoms. I was also given a depo-medrol/lidocaine injections in my left flank that did not relieve any of the pain. Other tests that I have had done are below;Kidney/Liver function panels: Normal24 hour free urine Cortisol: NormalLyme test: NegativeVitamin D: Low- Placed on 1,000 units daily..has not helped.Endoscopy: 2 biopsies taken. Negative biopsies, negative for H. Pylori, Negative for Celiac's. 5hiaa 24 hr Urine test for Carcinoid syndrome: Negative.Multiple RA/Arthritis panels: Negative A1C: Negative for Diabetes My other symptoms:Weight gain: 35-45lbs over 18 months, mostly in abdomenLeft wrist pain: described much like carpal tunnel painDiarrhea/constipation on and offTMJ like symptoms: Severe pain in Jaw, muscle relaxers didn't helpInsomniaLarge, red/purple Striae on abdomen Raynaud's (tingling, pins and needles, cold) in feetLower GI bleed (03/08/09)Loss of night vision HeadachesMuscle painIncreased hair growth Change in bite (dental)Nipple Discharge (sometimes milky in color..many times a greenish/black)ALWAYS thirsty No sex drive Random low grade feversAnd most recently, Severe back pain right at the level of my lowest ribs, and neck pain. I have seen Internal med, Urogynecology, GI, Chiropractic/acupuncture, and ENT physicians. I feel like they all focus soley on the problem that relates to their specialty, and fail to look at the whole picture. I need to find the root of this problem, before it completly takes over my entire life. Thank you for taking the time to read this, I know it is a lot...try living it! :(I am a 22 year old female also. same height. Simular symptoms but then some very different. I understand where you are coming from my problems started becoming a problem when i was 18. I have no diagnosis either, looks like i never will.have you had your CRP and ESR rates checked? They are inflammation markers, you probably have, but if you havent, have them checked. A rheumatologist would be the one that would prob test them. My levels are high. I need a doctor who will look at the whole picture too, i hope you find one.
    Anonymous 42789 Replies
    • November 13, 2009
    • 02:20 AM
    • 0
    Flag this Response
  • Quite the list of symptoms. In trying to get a realistic explanation that includes your appearance of symptoms and the resultant addition of symptoms, I can only think of a bone marrow disorder. Release of blood cell precursors into the blood can cause accumulation in joints and therefore pain. Spleen is responsible for "recycling of blood cells". An enlarged spleen could be the result of increased blood cell precursors or a specific type of blood cell. Unfortunately I haven't studied much of hematology and cell proliferation in marrow yet, so this is just an idea. So a suggestion would be have a sit down with a doc involved in hematology, the list of your symptoms should spark and idea if it's linked to marrow. good luck
    Croatiamedstudent 32 Replies
    • November 13, 2009
    • 06:15 AM
    • 0
    Flag this Response
  • I am a 22 year old female also. same height. Simular symptoms but then some very different. I understand where you are coming from my problems started becoming a problem when i was 18. I have no diagnosis either, looks like i never will.have you had your CRP and ESR rates checked? They are inflammation markers, you probably have, but if you havent, have them checked. A rheumatologist would be the one that would prob test them. My levels are high. I need a doctor who will look at the whole picture too, i hope you find one.Lymes disease is very hard to test for, and the list of symptoms is endless. My mother is dying from it. Find a lymes disease specialist who believes in it, and will put you on antibiotics for weeks until the spirokeet becomes somewhat available to the test. This disease will kill you, and it will keep persisting. A documentary was just released on the corruption of Lymes, it is called Under our skin. Look it up, and see if you think it relates to you at all. Some of your symptoms not all, are similar to my mothers, but everyone is different. If you believe you have it, fight it. She fought for ten years, was diagnosed with MS, Lupus, Parkinsons, Depression, you name it, they told her she had it. She was finally diagnosed with Lymes, with a test that proved her positive, instead of just a Doctors word. Good Luck.
    Anonymous 42789 Replies
    • November 14, 2009
    • 01:21 AM
    • 0
    Flag this Response
  • Try pituitary tumor. I had nipple discharge and they tested my prolactin levels, but they were normal on the tests. However, I have several of the symptoms of pituitary tumor/cushings. Weight gain, striae, depression, headaches, neck aches, and the same abdominal pain in my side below my ribs. It also landed me in the ER 4 times. My abdominal pain is better, but sometimes I still get bouts of stabbing pain or a ramming of a rod into my side. Though my prolactin levels were normal, my symptoms have gotten worse. Could be something worth looking into as you have very similar symptoms.
    Anonymous 42789 Replies
    • November 5, 2010
    • 04:10 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.