Discussions By Condition: I cannot get a diagnosis.

Please help stop the pain!

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Julianne42
  • June 2, 2008
  • 03:46 PM

Hi everyone. I'm new here, and facing a situation that is proving physically, emotionally, and financially draining. I'm a 30 year old female with no prior major illness. Here's the basics of what I've been facing. Any advice would be appreciated.

May 2007 - had baby (healthy), neck pain (due to prior injury, started hurting again after giving birth)

July 2007 - In China (for work). Food poisoning (bad pork) treated in clinic with one dose IV antibiotics. 2 wks later blood in stool, abdominal cramping.

October 2007 - abdominal cramping still present, return to US for treatment. GI exams (colonoscopy and upper GI) seem clear. Told it may be IBS and given probiotics. Cramping slowly goes away. Given heb A+B and flu shot. Feel totally healthy.

December 22, 2007 - give myself a pedicure, use sandpaper to rub off calouses on feet.

December 23, 2007 - wake up with toes red and swollen, stiff and painful.

January 2008 - pain has spread to hands and legs, tired, no appetite, weak, dizzy.
Visit ER, told it is periphoral neuropathy, tested for MS, Lyme, B12, GBS. Dozens of other tests, including MRI of brain and lumbar puncture. All normal. Saw reumatologist, told it is also not reumatological in nature.

Now - All earlier pain + dizzyness symptoms still present. Also now experiencing severe pain in hip joints especially at night.

The doctors have told me that is it possible a reaction to the flu shot, or a virus introduced via the pedicure. They have given me a script for neurontin which I threw away (I'm breastfeeding my daughter). I am no longer able to work, and it is difficult for me to take care of my baby.

Any advice?

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13 Replies:

  • Julianne!It sounds to me that you suffer from reactive changes after the food poisoning. A severe stomach infection can influence your immune system to react strangely. The most common consequence is joint problems (then it is called reactive arthritis) but it can be practically anything. Your story sounds pretty much like mine. My symptoms were dizziness, joint pain, sore hands and feet. It took me three years to recover.This condition should be known to a rheumatologist. You should be tested for salmonella, shigella, yershinia, campylobacter, but even if you are negative, there are many infections not yet known. But those mentioned above are known to result in reactive changes.I think you will get better, but it will take some time. I know what you are going through, my daughter was 4 when it happened, I was desperate. I wish you getting well soon. Take care!
    Felsen 510 Replies Flag this Response
  • I definitely will ask my doctor about all this. Wouldn't reactive arthritis be something that the reumatologist could have found? They assured me that it wasn't reumatological.
    Julianne42 5 Replies Flag this Response
  • Did you have an epidural when giving birth? Please look up arachnoiditis or adhesive arachnoiditis symtoms & causes. This may fit your situation & could also have been made worse by the lumbar punture. Many Drs do not recognize it. In fact many medical professionals don't seem to have a clue. Your MRI (hopefully with contrast) should be read by someone knowledgeable of this condition. Usually takes a long time for someone to recognize & confirm. Mimics MS & Lymes symtoms.
    Anonymous 42789 Replies Flag this Response
  • Yes, a rheumatologist should know, but they most often don’t. Because they are bad doctors and don’t follow the research. It took four rheumatologists before I found one that knew about all this (I am in Europe). The last years’ discussion about Lyme disease has open eyes in some of them. Borreliosis (Lyme disease) for example is a bacterial infection that gives all kinds of reactive symptoms. And so do many bacterial stomach infections. After my rheumatologist told me about it, I could read more on Medline. I don't think that your condition is any neuropathy at all, so don't worry!In your case the flu shot didn’t make things better. On the contrary it activated your immune system even more. But you couldn’t have known. When you tell your doctors about it, take it a bit easy, they might overreact when the patient knows more than they do. I really wish you the best of luck and I hope that you will recover soon.
    Felsen 510 Replies Flag this Response
  • I didn't. I had a totally natural child birth. The only thing I got was a shot of Rogam since I have B- blood and my daughter is B+.
    Julianne42 5 Replies Flag this Response
  • Did you have an epidural when giving birth? quote] I didn't. I had a toally natural child birth. All they gave me was a shot of Rogam, as I have B- blood and my daughter has B+.
    Julianne42 5 Replies Flag this Response
  • I had a totally natural child birth. All they gave me was a shot of Rogam, as I have B- blood and the baby has B+. I'll definitely talk to the rheumatologist about the possibility of it being reactive arthritis. I've been regretting getting that flu shot for months now! My doctors have been very great about looking through my notes with me, and talking to me about the logic behind their diagnosis and testing. I just wish it didn't take months to get an apointment. I do however still feel that it may be a type of neuropathy. The pain I feel is definitely a tingling pain, that often fits the 'stocking / glove' description. Also, I had definite flu like symptoms at onset. My personal guess is that I introduced a virus via that pedicure. Although, we do have a history of rheumatological diseases in the family. What did your hand and foot pain feel like?
    Julianne42 5 Replies Flag this Response
  • Also, I had definite flu like symptoms at onset. My personal guess is that I introduced a virus via that pedicure. Although, we do have a history of rheumatological diseases in the family. What did your hand and foot pain feel like? I dont think this is it but will mention it anyway.. seeing you mention you had flu like symptoms at onset. That is one way commonly chronic fatigue syndrome can start off.. also a stomach bug or issue can often be the trigger too. CFS can be of a slow onset and progressive. If you end up getting a lot more symptoms (headaches, insomina, dizziness esp when standing or standing still etc) and the fatigue and weakness gets alot worst esp post excertionally, IF nothing else fits (IF your doctors end up running out of ideas).. it may then be something then to consider. Flu shots if one has CFS can make things worst (vaccinations have also been known to trigger it). I currently dont think this is your issue but just something which you should put in the back of your mind for future referance.. just in case. .................... I suggest for you to go and see a good chiropractor. I have neck issues myself due to past traumas (car accidents and being in a rail disaster) and also have osteoarthritis in it. When something triggers it to start hurting again.. i find chiropractor treatments do it wonders. Also try taking fish oil supplements for it (anti imflamatory effects)...
    taniaaust1 2267 Replies Flag this Response
  • You may have been exposed to a virus or bacterium that is not common in the U.S. I hope you mentioned to your doctors your trip to China. For more info try here: http://wwwn.cdc.gov/travel/destinationChina.aspx
    aquila 1263 Replies Flag this Response
  • Julianne,I was thinking about your toes and I think that you might have had an infection introduced by your pedicure. If so, then you have had two infections during a rather short period of time instead of one. Actually it is exactly what triggered my reactive arthritis. The typical feature of reactive changes is that they don’t show up directly after the infection, but weeks or months after (never years after though). It takes time before the immune system overreacts. Here is my story; I have published it here before, to someone who had similar symptoms. Read it, and see if it might be something similar what you are going through.This happened to me 10 years ago (I was 40 then). I started to feel soreness in my heels, especially when I got out of bed in the morning. Then it got worse and I had constant pain and a burning sensation in the soles of my feet. Sometimes I had a feeling of numbnessAfter a while I got even worse. I could not walk at all and developed the same condition in my hands (palms). A month later my twin sister developed similar symptoms, but not as severe. Two weeks later her husband (a doctor himself) had a very mild variation on the same theme, but his symptoms only lasted for two weeks. I couldn’t walk for 6 months. I had a mild swelling around the heels (the wrinkles that normally are there were gone) and the afflicted areas were a bit more reddish than normal. I went to six different doctors, all thought I was crazy (one actually asked me if I had been raped and did not want to believe me when I said I hadn’t). They had run all kinds of tests which all came back negative. A college of mine is a radiologist, and she run MRI on my feet and we could clearly see on T2-weighted pictures that there was a thin inflamed layer under the skin. Finally when I started to recover I met a good rheumatologist who explained everything to me. I remember he called the reaction in my feet panniculitis. I talked to three people who had experienced something similar and nobody could ever figure out what was wrong. My theory is that a stomach flue started it. Our whole family had been skiing in France and we had had a horrible stomach infection. We had the infection about two months before our feet symptoms and I also developed a severe vertigo before my feet symptoms (the vertigo lasted for about a month and slowly disappeared). I also developed pain in my joints, worst was my lower back and my right knee. What had made things worse, I’m sure, was that three weeks before our ski trip I had gone through mononucleosis, which is a rather serious infection. It took three years before I recovered completely. Today my feet soles are wrinkled as usual. All pains have subsided and I am no longer dizzy. At the time I searched Medline for weeks on sore feet without finding anything published. I found though interesting articles on the topic of reactive arthritis. My rheumatologist’s theory is that these two infections upset my immune system and made it overreact. This is how most of the autoimmune conditions start. There is often an infection starting it. Maybe my story can help?
    Felsen 510 Replies Flag this Response
  • Definitely try and find a Travel Medicine Doctor- they are usualy also Infectious Disease Specialists. There are molds that cause human disease that are not found here but are found in Asia that could be causing your problems. The intial reaction could have been ingested mold rather than bacterial food poisoning which would be why the antibiotics didn't really get it. Most doctors don't think to look for fungal infections unless you've had surgery or are a farmer. For more information on fungi, see www.doctorfungus.org. Hope that helps.
    dizzy lizzie 192 Replies Flag this Response
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  • My rheumatologist’s theory is that these two infections upset my immune system and made it overreact. This is how most of the autoimmune conditions start. There is often an infection starting it. Maybe my story can help? Sounds very similar. Thank yuo for sharing your experiences. How did your rheumatologist test for this? Just the MRI? Also, how were you treated?
    Julianne42 5 Replies Flag this Response
  • My rheumatologist tested for all of these infections named above and he also checked the rheumatoid factor. I was negative for all of this. The MRI was initiated by me and not by him, but he was happy to see the results. He is an expierienced and humble doctor and he diagnosed just from my patient history. I was taking loads of diklofenak, but modern reseach shows that if can actually give you a heart attack so I wouldn't recommend it. I would love to hear how it goes with you. If you have something similar what I had, it will pass by itself. But it takes some time. The only advise I can give you is to try to avoid infections or anything that can activate your immune system (flu shot, ecchinacea supplement etc). Greetings from Europe! And best of luck!
    Felsen 510 Replies Flag this Response
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