Discussions By Condition: I cannot get a diagnosis.

Desperate :( stomach, joints, skin, etc..

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Claire555
  • May 5, 2010
  • 08:54 AM

I have been trying to get a diagnosis for 6 plus years. I have a wide array of symptoms and I am having a very difficult time finding any answers at all. I understand diagnosing some conditions can be difficult and a long process. I am just very very tired and any insight that may be able to help will be appreciated. I am a single mother of three so being this sick all the time is really taking its tole on my energy.
I am seeing an internist currently. I have been tested for crohns (negative), celiac (negative) twice awaiting third test result, ana arthritis tests (negative), cerebral angiogram (negative), x rays ( neg for inflamation or damage to joints)

Symptoms:
Large and small joint pain, stiffness, visible inflamation
Recurring loss of shoulder movement due to intense pain
Skin rashes
Photo-sensitivity
Cold all the time, but body radiates heat
Cold hands/ feet, either red or purple
Numb fingers, comes and goes
Night sweats, soak the bed
Low body weight and height
Frequent urination
Abdominal distention
Abdominal pain, cramping or sharp pain
Ulternating diarrhea or constipation
Anemia
Blood in stool
Hypoglycemic symptoms
Low blood pressure
Unexplained and easy bruising
Beau's lines in nails, brittle, peeling, brittle hair
Mood disorder
Headaches, cluster, migraine

Vision problems - some loss of peripheral vision, focus, tear in retina, high pressure measurements, and enlarged ocular cups? being screened for glaucoma regularly

I am sure i have forgotten some things..

I am a 31 year old female. If that helps any. Any insight or suggestions at all will be appreciated so much. ah yes.. I am schedualed for a colonoscopy and am hoping that might reveal something. I should mention i do get very red across the nose and cheeks esp when i am feeling at my worst. I am not sure if it is a malar rash or if it is not. Or if it matters at all. Something that I have noticed and others always ask if sun burnt or comment on the red across the face.

Thank you for your time ...

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11 Replies:

  • You should be tested for Lupus....and B12 defficiency. Some of your symptoms sound like mine and I'm B12 defficient. Have your doctor order an serum B12, homocystein level and a urine MMA. Those will test you for the B12 defficiency. And you should have an ANA drawn for the Lupus. isn't it awful to try to raise kids while your feeling so lousy? Do you, by any chance, have swollen lymph nodes? Chris
    Chris1234 12 Replies Flag this Response
  • ChrisThanks for your reply Chris, I have been tested for B 12 defficiency a couple of times, because of the numb fingers. I am perfect there. I do come up low for vitamin D and K. Very low iron and low ferritin. I have had one ANA test done, I don't know a lot about this test, they were looking for arthritis, but is it the exact same test, or would Lupus go undetected? My lymph nodes i think seem ok, or ok at the moment. :)Yes it's not a lot of fun raising kids and being so sick, I try my best. Some sort of treatment option wold be such a huge relief. I hope you've found relief with your symptoms..thanks, Claire
    Claire555 2 Replies Flag this Response
  • I'm curious as to your actual B12 result. The USA has 200-900 as "normal"....when in fact, neurological problems can happen at a result below 500. My result was 224....which was not flagged on the lab report, because it falls within the normal range. My homocystein and MMA results were elevated, which is a definitive diagnosis of profound B12 deficiency. I had numbness in my feet, tingling of my hands, face, mouth and tongue, severe vertigo (I couldn't walk a straight line in the dark), extreme fatigue, insomnia, severe mood swings, forgetfulness, I was easily overstimulated by lights and sounds.....I could go on and on..........I started taking Methyl B12 and my symptoms improved so quickly. I had gastric bypass almost 2 years ago, so that's where mine came from. But B12 def is so much more common than people (doctors included) realize. The ANA would have come up positive if it were lupus. I hope you find your relief soon. But it wouldn't hurt to start taking large doses of methyl B12....I use the best on the market. I've researched this to the 9th degree. I'm a lab tech so I have a big backround in all this. Go to IHERB.COM and order the Jarrow Brand Methyl B12 5000. Start by taking one per day...let it dissolve under your tongue or tuck it under your lip. The longer it stays in your mouth, the better absorption you'll get. You can't overdose on B12...it's water soluable. Let me know how you do. You may be pleasantly surprised at the outcome. Keep me posted. Stay away from cyanocobalamin (it's the form you get in all other vitamin stores). It's the inactive form of B12 and is useless. Good Luck! Chris
    Chris1234 12 Replies Flag this Response
  • Also....make sure you're taking Vitamin d in the dry D3 form. All other forms aren't easily absorbed by anyone. That you can get at CVS....
    Chris1234 12 Replies Flag this Response
  • I will order some of that, I wasn't taking vitamin D in the dry form either.I am in a small town in Canada. I don't know the numbers from my B12 report. I have noticed the thing with our doctors here is that they tell you if there is a problem or not. But don't give you much info, even when you ask directly. I do know there was not a urine test involved so I will have to ask about that. I am trying not to loose all confidence in my doctors. That would be amazing if this could work for me . And i will let you know how that works. :)Thanks, Claire
    Claire555 2 Replies Flag this Response
  • I have been trying to get a diagnosis for 6 plus years. I have a wide array of symptoms and I am having a very difficult time finding any answers at all. I understand diagnosing some conditions can be difficult and a long process. I am just very very tired and any insight that may be able to help will be appreciated. I am a single mother of three so being this sick all the time is really taking its tole on my energy. I am seeing an internist currently. I have been tested for crohns (negative), celiac (negative) twice awaiting third test result, ana arthritis tests (negative), cerebral angiogram (negative), x rays ( neg for inflamation or damage to joints)Symptoms:Large and small joint pain, stiffness, visible inflamationRecurring loss of shoulder movement due to intense painSkin rashes Photo-sensitivityCold all the time, but body radiates heatCold hands/ feet, either red or purpleNumb fingers, comes and goesNight sweats, soak the bedLow body weight and heightFrequent urinationAbdominal distentionAbdominal pain, cramping or sharp painUlternating diarrhea or constipationAnemiaBlood in stoolHypoglycemic symptomsLow blood pressureUnexplained and easy bruisingBeau's lines in nails, brittle, peeling, brittle hairMood disorderHeadaches, cluster, migraineVision problems - some loss of peripheral vision, focus, tear in retina, high pressure measurements, and enlarged ocular cups? being screened for glaucoma regularly I am sure i have forgotten some things..I am a 31 year old female. If that helps any. Any insight or suggestions at all will be appreciated so much. ah yes.. I am schedualed for a colonoscopy and am hoping that might reveal something. I should mention i do get very red across the nose and cheeks esp when i am feeling at my worst. I am not sure if it is a malar rash or if it is not. Or if it matters at all. Something that I have noticed and others always ask if sun burnt or comment on the red across the face.Thank you for your time ...Many of your symptoms sound familiar to me. Have you thought about food intolerance? I find that if I have cow's milk products I get swollen and stiff joints, and the rashes and abdominal symptoms to an extent. I get the redness across nose and cheeks if I have red wine or cheap white wine. this started when I was in my early 20's. It is characteristic of food-related arthritis that it happens in one or two joints at once, but it moves around - I have had it in fingers, knees, sacro-iliac, neck, shoulder, jaw - until I found out what was causing it by cutting out milk/cheese/yoghurt/ice cream etc for 3-4 weeks.This would probably not explain all your troubles, but could it be the cause of some of them? It may not be dairy for you, but it is probably one of the usual culprits (Off the top of my head, dairy, eggs, coffee, gluten, red meat, red wine, tomatoes, potatoes, citrus, chocolate, all migraine triggers), and most likely the one you have a lot of. Good luck
    Anonymous 42789 Replies Flag this Response
  • You may have some version of Ehlers Danlos Syndrome particularly with joint pain, stiffness, retinal tears etc it sounds like it maybe the vascular type. This difficult to diagnose and you need to speak to a rheumatologist or an EDS specialist. If you google the condition you may find a specialist in your area. X ray's of patients with EDS show no difference or swelling in bones, but may show difference in the shape of the ends of the bones within the joints. Its one condition you could also rule out.
    Anonymous 42789 Replies Flag this Response
  • I have been trying to get a diagnosis for 6 plus years. I have a wide array of symptoms and I am having a very difficult time finding any answers at all. I understand diagnosing some conditions can be difficult and a long process. I am just very very tired and any insight that may be able to help will be appreciated. I am a single mother of three so being this sick all the time is really taking its tole on my energy. I am seeing an internist currently. I have been tested for crohns (negative), celiac (negative) twice awaiting third test result, ana arthritis tests (negative), cerebral angiogram (negative), x rays ( neg for inflamation or damage to joints) Symptoms:Large and small joint pain, stiffness, visible inflamationRecurring loss of shoulder movement due to intense painSkin rashes Photo-sensitivityCold all the time, but body radiates heatCold hands/ feet, either red or purpleNumb fingers, comes and goesNight sweats, soak the bedLow body weight and heightFrequent urinationAbdominal distentionAbdominal pain, cramping or sharp painUlternating diarrhea or constipationAnemiaBlood in stoolHypoglycemic symptomsLow blood pressureUnexplained and easy bruisingBeau's lines in nails, brittle, peeling, brittle hairMood disorderHeadaches, cluster, migraine Vision problems - some loss of peripheral vision, focus, tear in retina, high pressure measurements, and enlarged ocular cups? being screened for glaucoma regularly I am sure i have forgotten some things.. I am a 31 year old female. If that helps any. Any insight or suggestions at all will be appreciated so much. ah yes.. I am schedualed for a colonoscopy and am hoping that might reveal something. I should mention i do get very red across the nose and cheeks esp when i am feeling at my worst. I am not sure if it is a malar rash or if it is not. Or if it matters at all. Something that I have noticed and others always ask if sun burnt or comment on the red across the face. Thank you for your time ... Hi, i dont have a clue what your condition is but from your post you could have some other conditions as coexisting conditions of whatever condition you have. The numb cold fingers may be "Raynauds syndrome". "Abdominal distentionAbdominal pain, cramping or sharp painUlternating diarrhea or constipation" Those symptoms could be either constipation with overflow (which then will appear as diarhea) ... or Irritable bowel syndrome (IBS). These conditions often appear with quite a few different illnesses.
    taniaaust1 2267 Replies Flag this Response
  • I had many similar symptoms. Spent four years having various tests run: colonoscopy, endoscopy, Ct scans, blood work...mostly normal or just slightly out of range results that my pcp was not concerned about. A couple of my doctors suggested I see a pain management specialist....very frustrating. I was beginning to think whatever this was was going to kill me. Recently I went to my gyno for a new symptom (one I thought unrelated to all the rest). He ran a test and found out I had a protozoan infection. Dr. prescribed Flagyl and on the second day most of my symptoms have gone away: joint & bone pain, extreme fatigue, nausea, extreme bloating, lower abdominal pain, lower back pain, numbness in extremeties; the blue hands and feet (Reynaud's) is infequent, so it's too early to tell if that is also gone. There are different types of protozoan infections from what I have been able to determine...might be worth checking into. Hope your better soon....Kind regards.
    Anonymous 42789 Replies Flag this Response
  • Although you`ve done the ANA test,i still believe it could be Lupus.I would recomend you to ask for further testing:anti-DNA,anti-SM antibodies and CRP are more sensitive for this disease
    Anonymous 42789 Replies Flag this Response
  • You should see a hemotologist or geneticist to see if you might have Ehlers Danlos. I spent years with "unrelated" medical occurrences--doctors would say, "These things happen" and I would wonder, "Why are they happening to me?" You will be surprised what "unrelated" things are actually related. One of the types of Ehlers is Hypermobility. In addition to joint pain (and frequent subluxing and/or dislocation of joints such as the jaw, hips, shoulders and knees), you might be surprised to hear that a lot of us have chronic and intractable migraine. Migraine can be the headache, but its auras and sometimes the headache itself is photophbia (light sensitivity) and sonaphobia (sensitivity to noises); my son (who also has Ehlers) is also very sensitive to smells and 30 seconds with a citrus product and he is in full blown migraine. It is not unusual for Ehlers patients to have Raynauds (the cold, discoloured hands and feet) and unexplained bruising is common. Since Ehlers is a connective tissue disorder, it could also account for the underlying muscle issues which could cause your incontience. But not every doc can recognize an Ehlers patient; some have never seen one, so depending on where you live, your biggest issue may be getting someone who knows what they are looking at. You might also look at http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&partid=1279 and take it with you to your doc. Good luck!
    Anonymous 42789 Replies Flag this Response
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