Discussions By Condition: I cannot get a diagnosis.

Someone please help me find a diagnosis

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: keanhe
  • July 30, 2010
  • 00:06 AM

Here's whats going on:
06/09 - I got a UTI infection of the urethra, due to my prince albert piercing.

I saw my doctor, 1 week keflex prescribed, cleared up no issues.

01/10 - UTI Infection is back. Called doctor, 5 days keflex prescribed. Infection symptoms cleared up.

5 Days later, pain came back. Same symptoms. Called doctor, 5 days keflex prescribed. Symptoms disappear.

Removed piercing before next infection.

1 day later, I get a pain like I've never felt before. Diagnosed kidney infection, 7 days avelox.

Avelox feels like pure ***l to me, make my body feel horrible, barely made 7 days.

2 weeks after this series of events, symptoms initial infection begins.

04/24/10 - E.R. for an immense sensation of tingling and full body numbness. E.R. doctor says hyperventilation

Symptoms that developed over months:
tachycardia, high blood pressure, fever, severe constipation, severe dehydration, weight loss (40 pounds in 5 weeks), severe dizziness (couldnt stand without looking down), chest pains, muscle pains.

05/03-05/06/10 - Symptoms too severe, admitted into hospital.

3 days later, diagnosed as Clostridium Difficile from toxins in my stool sample.

10 days of Metronidazole, symptoms clear up, finally get to have a month where I feel better. I eat correctly, I work out, I even am about to enlist in the Navy as an Intelligence Specialist.

06/04/10 - I go to MEPS (Military Entrance Processing Station) and pass the full physical, drug tests, etc, but I am temporarily disqualified from the service due to tachycardia (127 bmp upon arrival, 107 after 20 minute rest and water, 100 after 30 minutes more)

06/10/10 - I start feeling pain in my lower back, like an ache.
06/17/10 - I have such a pain in my back its getting ridiculous now.
06/20/10 - The pain becomes the worst today. Stays relatively the same for a few days (4), then slowly begins to disappear.

Current Symptoms:

leg pains
knee pain
ankle pain
wrist pain
(lets just call those them arthritis-type pains)
balance problems
constant headache/sensation***
mental issues (a little difficulty with speech, blanks, thinking and reading slower)
constant low temperature (normal body temperature down from normal 98.6 down to normal 96.9-97.5 after C. Diff. and never went up)
some stomach/bowel issues (constipation, slight stomach pains)
first 2 weeks walking without cane extremely hard, use of cane since to help

***I have had a headache that has lasted the entire time I've been sick. When I had C. Diff, I just thought the sensations in my head and body were because I was sick. I still feel the headache/pressure and everyday, along with sensations that go down my neck into my upper back.

Along with these symptoms, after looking for anything that could help diagnose me, Ive only really found one thing. I have a positive Romberg's Sign.

I still have all these symptoms, and this will be the eight month in a row that I haven't felt real relief. Someone help

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12 Replies:

  • Im not sure where to start with your post. looking at your post I may be seeing two different issues going on.. but they can go together. I think your miltary idea may have to be put off for a while as you may have a quite serious issue going on here. ***I have had a headache that has lasted the entire time I've been sick. When I had C. Diff, I just thought the sensations in my head and body were because I was sick. I still feel the headache/pressure and everyday tachycardia, dizziness and chest pain, balance issues, brain issues, bowel issues. I have a condition called Postural orthostatic tachycardia syndrome (POTS). and that could be "part" of your current issues. It causes the symptoms above. That head pressure feel is one I know very well with this condition. This disorder can be a part of other disorders. POTS tachycardia is usually worst while standing but in some it can be happening at any time. POTS can be triggered from infections.http://www.dinet.org/pots_an_overview.htm You need to get this condition ruled out as being the cause of your tachycardia. POTS can be treated (POTS patients need to keep well hydrated or symptoms will be worst). Tilt table testing is often done to diagnose POTS.*note this is not an actual heart issue as such as its an autonomic nervous system dysfunction which affects the heart rate..body dysregulation issue..so hence most heart specialists will not know about this condition............... Your pain symptoms may be part of fibromyalgia. See if you can find a knowable fibromyalgia doc to see if you have the fibromyalgia trigger points happening.......... both the above conditions are 3 times more common in females then guys so you may find it harder to get a diagnoses. The two conditions above are also often a part of a condition called chronic fatigue immunity dysfunction sydrome (CFIDS) .. those with CFIDS may find they have a postive Romberg's sign. (i myself have.. I have all the conditions Ive listed here). Half of those who get CFIDS end up having to go onto disability allowance as they cant work. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdfhttp://sacfs.asn.au/download/consensus_overview_fms.pdfhttp://wwcoco.com/cfids/bernesx.html (note.. there are three types of IBS.. in one type there is constipation predominant rather than diarrhea and many with CFIDS have the constipation rather than diarrhea). best luck with finding a knowable doctor.. it is very hard to find doctors who are properly aware of this illness.
    taniaaust1 2267 Replies Flag this Response
  • Im not sure where to start with your post. looking at your post I may be seeing two different issues going on.. but they can go together. I think your miltary idea may have to be put off for a while as you may have a quite serious issue going on here. tachycardia, dizziness and chest pain, balance issues, brain issues, bowel issues. I have a condition called Postural orthostatic tachycardia syndrome (POTS). and that could be "part" of your current issues. It causes the symptoms above. That head pressure feel is one I know very well with this condition. This disorder can be a part of other disorders. POTS tachycardia is usually worst while standing but in some it can be happening at any time. POTS can be triggered from infections.http://www.dinet.org/pots_an_overview.htm You need to get this condition ruled out as being the cause of your tachycardia. POTS can be treated (POTS patients need to keep well hydrated or symptoms will be worst). Tilt table testing is often done to diagnose POTS.*note this is not an actual heart issue as such as its an autonomic nervous system dysfunction which affects the heart rate..body dysregulation issue..so hence most heart specialists will not know about this condition............... Your pain symptoms may be part of fibromyalgia. See if you can find a knowable fibromyalgia doc to see if you have the fibromyalgia trigger points happening.......... both the above conditions are 3 times more common in females then guys so you may find it harder to get a diagnoses. The two conditions above are also often a part of a condition called chronic fatigue immunity dysfunction sydrome (CFIDS) .. those with CFIDS may find they have a postive Romberg's sign. (i myself have.. I have all the conditions Ive listed here). Half of those who get CFIDS end up having to go onto disability allowance as they cant work. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdfhttp://sacfs.asn.au/download/consensus_overview_fms.pdfhttp://wwcoco.com/cfids/bernesx.html (note.. there are three types of IBS.. in one type there is constipation predominant rather than diarrhea and many with CFIDS have the constipation rather than diarrhea). best luck with finding a knowable doctor.. it is very hard to find doctors who are properly aware of this illness.I no longer have tachycardia, that was a symptom of the Clostridium Difficile toxins, and was cured on 05/06/10.My mother has fibromyalgia, but she says its a "crap" diagnosis thats used to basically summarize pain that can't otherwise be summarized.The Romberg sign is on and off, depending on how beat up I am at the time. I dont know why this is.I went and got a reference to a neurologist today. I don't want these cognitive issues to become permanent, as I just enrolled in classes for a Biology bachelor, preferably with a pre-med emphasis.Life isn't looking to great atm.Thanks for your suggestions
    Anonymous 42789 Replies Flag this Response
  • Anti-DNA,ANCA,Anti-Transglutaminase antibodies,CRP might help diagnosing you
    Anonymous 42789 Replies Flag this Response
  • Here's whats going on:06/09 - I got a UTI infection of the urethra, due to my prince albert piercing.I saw my doctor, 1 week keflex prescribed, cleared up no issues.01/10 - UTI Infection is back. Called doctor, 5 days keflex prescribed. Infection symptoms cleared up.5 Days later, pain came back. Same symptoms. Called doctor, 5 days keflex prescribed. Symptoms disappear.Removed piercing before next infection.1 day later, I get a pain like I've never felt before. Diagnosed kidney infection, 7 days avelox.Avelox feels like pure ***l to me, make my body feel horrible, barely made 7 days.2 weeks after this series of events, symptoms initial infection begins.04/24/10 - E.R. for an immense sensation of tingling and full body numbness. E.R. doctor says hyperventilationSymptoms that developed over months:tachycardia, high blood pressure, fever, severe constipation, severe dehydration, weight loss (40 pounds in 5 weeks), severe dizziness (couldnt stand without looking down), chest pains, muscle pains.05/03-05/06/10 - Symptoms too severe, admitted into hospital.3 days later, diagnosed as Clostridium Difficile from toxins in my stool sample.10 days of Metronidazole, symptoms clear up, finally get to have a month where I feel better. I eat correctly, I work out, I even am about to enlist in the Navy as an Intelligence Specialist.06/04/10 - I go to MEPS (Military Entrance Processing Station) and pass the full physical, drug tests, etc, but I am temporarily disqualified from the service due to tachycardia (127 bmp upon arrival, 107 after 20 minute rest and water, 100 after 30 minutes more)06/10/10 - I start feeling pain in my lower back, like an ache.06/17/10 - I have such a pain in my back its getting ridiculous now.06/20/10 - The pain becomes the worst today. Stays relatively the same for a few days (4), then slowly begins to disappear.Current Symptoms:leg painsknee painankle painwrist pain(lets just call those them arthritis-type pains)balance problemsconstant headache/sensation***mental issues (a little difficulty with speech, blanks, thinking and reading slower)constant low temperature (normal body temperature down from normal 98.6 down to normal 96.9-97.5 after C. Diff. and never went up)some stomach/bowel issues (constipation, slight stomach pains)first 2 weeks walking without cane extremely hard, use of cane since to help***I have had a headache that has lasted the entire time I've been sick. When I had C. Diff, I just thought the sensations in my head and body were because I was sick. I still feel the headache/pressure and everyday, along with sensations that go down my neck into my upper back.Along with these symptoms, after looking for anything that could help diagnose me, Ive only really found one thing. I have a positive Romberg's Sign.I still have all these symptoms, and this will be the eight month in a row that I haven't felt real relief. Someone helpHi,I caught the desperation in the title of your post. So sorry to hear of your health difficulties. Have had Chronic Fatigue/Fibromyalgia and it sounds like you may have it. The pains, weight loss, fatigue, headache, infections, bowl trouble and dizziness all fit.I agree with the person who posted this same idea above. I agree also with the suggestion to read up on chronic fatigue/ fibromyalgia.Some further ideas: Do all you can to help your immune system. It is compromised as shown by the repeated infections and rounds of antibiotics. The antibiotics have destroyed the helpful bacteria in your intestine and the unbalance allows candida albicans to flourish and cause many of your symptoms. Taking plenty of probiotics will help (acidophillus and bifidus are key). Look for the types at the health food store with the most organisims but without magnesium stearate. The bad bacteria (candida, or yeast) will cause tiny holes in your intestine which allows improperly digested food and toxins to enter your blood stream hence the mental fogginess and digestive trouble.The candida can migrate to other organs and cause a lot of problems in your whole body including the joint and muscle pain. I had many of your symptoms and generally felt poisoned and terrible all of the time.Candida can also affect the adrenal glands and thyroid which regulate energy levels, blood pressure, temperature and more. It looks like your adrenals and thyroid are not functioning properly. When reading up on Candida and Chronic Fatigue you will find a diet to follow to get things back in balance. Mainly it is a healthy diet without added sugar and white flour with plenty of fresh vegetables and salad. Trying to avoid stress and get plenty of sleep are also good.Think about borrowing or purchasing a blood pressure cuff to measure your blood pressure. The dizziness may be from low bp alone. I was greatly helped by drinking plenty of pure water (half a gallon) throughout the day and not reducing salt. At my worst, a doctor told me to dissolve a teaspoon of salt in a glass of water and drink it as often as I could. The tacycardia may stem from low blood pressure alone. The heart is beating like crazy to keep the pressure up enough to supply the brain and other vital organs. A medication called florinef helped me a lot with the low bp. I still drink the same amount of pure water and don't restrict salt.A good Naturopathic Doctor or D.O. (doctor of osteopathy) will be important. These tend to be more open to alternative and natural medicine which I suspect you will really need. There are also support groups that can really help a person get over the worst times. The isolation and anxieties can be greatly reduced by supportive and understanding people who also come with a lot of good ideas treatment-wise and will know the good doctors.There is hope! Good luck with your recovery. It may take some time, but if you are willing to do what helps it will come. It takes some commitment though, because eliminating sugar for a good while is a key step for improvement. Getting into organic foods and juicing helped me. There are many things that will help and I wish you well. A final note, sexual activities are personal but may seriously affect a person's health. I don't know your lifestyle and want to be respectful. However, anal sex is a very serious assault on the immune system. If this part of your life, I would encourage you to find alternatives that will allow you get your health back. Take care!
    Alisa6 1 Replies Flag this Response
  • Anti-DNA,ANCA,Anti-Transglutaminase antibodies,CRP might help diagnosing youI've had a Anti-SM + Anti-RNP that came back negatives. My CBC blood test came back all normal except cholesterol, which is 39. Never had cholesterol problems before, if that counts for anything.I am spanish, male, 165 (was 200 when first C diff symptoms came) and 20 years of age.C-reactive protein will be done soon, but I'm sure that I would ask for a ESR first, because my family is DOOMED to have autoimmune diseases (my grandmother has about 5 or 6).
    Anonymous 42789 Replies Flag this Response
  • Anti-DNA,ANCA,Anti-Transglutaminase antibodies,CRP might help diagnosing youI've had an Anti-SM and RNP come back negative for lupus, cbc normal ranges except cholesterol, which is a first (39), and I would do a ESR before a C-reactive protein because I have a family history of auto immune diseases, but the other anti tests you suggested look good. My family also has a history of getting cancer at younger ages (dad had Malignant Melanoma at 42, his mom breast cancer, etc.).Reviewing my other post, my temperature was off. Its usually 95.9 to 97.3.My symptoms have gotten better, but never fully went away, since that "attack" I had, and will be going to a neurologist for a MRI or CT of my head/spine because my doctor is looking into MS I suppose.
    Anonymous 42789 Replies Flag this Response
  • I no longer have tachycardia, that was a symptom of the Clostridium Difficile toxins, and was cured on 05/06/10. My mother has fibromyalgia, but she says its a "crap" diagnosis thats used to basically summarize pain that can't otherwise be summarized. The Romberg sign is on and off, depending on how beat up I am at the time. I dont know why this is. I went and got a reference to a neurologist today. I don't want these cognitive issues to become permanent, as I just enrolled in classes for a Biology bachelor, preferably with a pre-med emphasis. Life isn't looking to great atm. Thanks for your suggestions Thanks for the updates. Romberg sign may go on and off in CFIDS, depending on how you are "crashing" with it. i do not know if it does that in any other neurological illnesses or not. There is a strong connection between fibromyalgia and CFIDS. One quarter of those with fibromyaliga end up getting CFIDS and a half to three quarters of those with CFIDS get fibromyalgia. There is a genetic link too with these illnesses. I myself have CFIDS and have had fibromyalgia too. My grandmother has fibromyalgia. Yeah some doctors do use fibro as a trash basket diagnoses when they cant work out what is causing pain... but this diagnoses shouldnt be used like this, it is an actual illness itself.. with ones body having a hyperactive pain response. In the past couple of years.. there have been new scientific findings with this illness. Be aware that in CFIDS there often can be a remission time after the first bout of illness, your current improvement may mean you are going to go into remission for a while. (i was sick for several years and then went into remission for several, before being hit again by it. CFS/ME specialist Dr Cheney says this remission is a common thing with this illness). You should be taking care to take things easy. Intense study can be extremely bad for this illness due to the extra stress placed onto the body.. which affects the cells of the body etc. Any kind of exertion.. physical or mental or emotional may make the condition worst. I do want to say keep your eye out for info on a newly discovered virus XMRV which is being linked to cancer, CFIDS and also fibromyalgia. It is possible your family may have this retrovirus involved in the family health issues. Take care, best luck (for more info on CFIDS, the biggest forum for it is the Phoenix Rising forums. Many there are very scientifically minded so you can get easy access to the latest XMRV findings and scientific developments there)
    taniaaust1 2267 Replies Flag this Response
  • I'd also like to add to the list of symptoms an enlargement of one lymph node under my arm, right side of body, and a swollen tonsil on the same side, just slightly. No white, just red. Also, my blood pressure is down from normal ranges by about 10-20 on the top and bottom numbers.
    Anonymous 42789 Replies Flag this Response
  • What I am sensing is that you had a body piercing and suffered some trauma, emotional or physical at that time or afterwards. It could be that there was an injury to the penis itself during the procedure. It seems to tend to gather bacteria for you, so you cannot use it after all. In addition to any trauma, you feel that the instruments were not sanitary. What country did this happen? Did you see the person clean the instruments? Of course, if you did not see that, then you know you need to be screened for stds, along with hiv antibody, which is where you are going with your last post. Once you get the blood test, a lot of your anxiety should calm down and you can focus on healing. Acupuncture, with disposable needles from a reputable doctor, along with homeopathic may help.
    Monsterlove 2921 Replies Flag this Response
  • What I am sensing is that you had a body piercing and suffered some trauma, emotional or physical at that time or afterwards. It could be that there was an injury to the penis itself during the procedure. It seems to tend to gather bacteria for you, so you cannot use it after all. In addition to any trauma, you feel that the instruments were not sanitary. What country did this happen? Did you see the person clean the instruments? Of course, if you did not see that, then you know you need to be screened for stds, along with hiv antibody, which is where you are going with your last post. Once you get the blood test, a lot of your anxiety should calm down and you can focus on healing. Acupuncture, with disposable needles from a reputable doctor, along with homeopathic may help.No, but thanks for the advice.Procedure done by 20+ year veteran, usa, all legit.Not why im posting though unfortunately.My leg muscles have been getting tight all day, and I have a weird new symptoms. It feels like I'm getting shocked in the top back of the head by electricity when I walk sometimes. My muscles do it to, and I notice it alot at the computer. Burning, electrical pain. All over.
    Anonymous 42789 Replies Flag this Response
  • I'd also like to add to the list of symptoms an enlargement of one lymph node under my arm, right side of body, and a swollen tonsil on the same side, just slightly. No white, just red. Also, my blood pressure is down from normal ranges by about 10-20 on the top and bottom numbers. With CFIDS Low blood pressure appears in 86% of patients http://wwcoco.com/cfids/bernesx.html (the BP can also start swinging both high and low). ....... there isnt many conditions at all which can start causing all these symptoms. Make sure that thyriod conditions have been ruled out as those too can cause low BP and low body temp.
    taniaaust1 2267 Replies Flag this Response
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  • With CFIDS Low blood pressure appears in 86% of patients http://wwcoco.com/cfids/bernesx.html (the BP can also start swinging both high and low). ....... there isnt many conditions at all which can start causing all these symptoms. Make sure that thyriod conditions have been ruled out as those too can cause low BP and low body temp.That document you referenced has given me a lot of relief, as I was starting to get really worried and discouraged about what could be wrong with me. Oh well. I'll still go to my neurologist appointment, and if he says nothing about it, or cant come up with anything, I'll bring it up. Thanks again for that document
    Anonymous 42789 Replies Flag this Response
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