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unknown disease from last 5 months..please help

Hello experts....I had unprotected sex with street prostitute before 5 months..I got fever and sore throat a week after exposure..after 2 weeks suddenly I got pain started in ny knees soles feet fingets palm....I am not able to sleep from ladt 5 months....M getting burning sensations and pain persistently in my soles..my soles and feet have became reddish and are really paining from last 5 months..pain gets worse at night while I sleep or rest....I have tested for hiv hepatitis c b and syphillis..lastly I took test for hiv and hepatitus c after 5 months..both were negative..I have visited infectious disease doctor..he doesnt have any clue for my pain..I have taken ra test,ana,anticcp,aso titre,thyroid test all were negative... I also took nerve conduction study test before 4 days..it was also normal....m really fed up of my pain and my life has became hell from last 5 months..are there any other diseases which can cause burning sensations extreme pain and redness in my feet soles palms knees?my soles are always red and sore..my esr and crp values were elevated. My esr was 36 and crp was 48....please help
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Avatar universal
Did you find your issue ??  can you pls let us know ?
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Avatar universal
Did you figure out what's going on with you ?
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1415174 tn?1453243103
COMMUNITY LEADER
So you were checked for diabetes? Also, you could have a neuropathy. Not CIDP.  I don't think it is related to Chlamydia or GC. These don't cause pain in the feet or hands. Burning pain is usually nerve pain.  You don't have joint stiffness in the morning type of pain it is burning pain all the time and both sides of the body? What parts of the body is it in now. Is it the same both hands both feet and knees? I wonder if there is some type of autoimmune disease?  Since your RAcand CRP and ESR and a bit high. Maybe Celiac disease. Read this article.

#1

http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/celiac.shtml

You also maybe want to get these tests done:

#2 If #1 doesn't work then  try autoimmune Blood tests:

    ANA (anti-nuclear antibody)
    Anti-SSA and SSB antibodies
    RF antibody (rheumatoid factor)
    Erythrocyte sedimentation rate
    Immunoglobulin electrophoresis
    Anti DNA
    
I would try if you can talking to a gastrointestinal doctor and see if you have celiac disease because the symptoms fit and go gluten free diet for a while. It may be hard in India to do that I don't know. But see the link. Then if you don't have that you can try the autoimmune disease route and get the tests in #2. done.

mkkh9
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Avatar universal
I dont think so its cidp sis....i have seen 2 neurologists and 1 neurosurgeon till now....my last neurosurgeon checked me and told that it doesnt look like dat some major prob is there..he told me it can be bcoz of my 2 surgeries i got last year and this year but i dont think so it must be bcoz of surgery..i had recovered fully afte my surgery and was fully fit,just after this exposure all this things started....i did nerve conduction study test it came bk normal....my last neuro surgeon ordered some tests like vitamin b12,vitamin d,serum cpk,blood sugar,cbc and esr.. everything was normal except esr and ra factor..my esr came 20 and ra factor was slightly elevated at 17,normal value was upto 14....yesterday i wanted to make sure and did esr and ra factor from another lab from where my esr came 2,and ra facor came back negative..m totally confused right now sis :( no one is able to diagnose me but this symptons are killing me....do u think that i should test for chlamydia and gono although my docs are tellin me dat it doesnt cause this much symptoms?sis my red blood cell counts came a bit higher at 5.66 where normal range was between 4.73 - 5.49.... what does this mean?
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1 Comments
Since March 2015 no activity on this thread and I am curious if your issues are resolved or able to find out the underlying cause. I am having similar symptoms and it's been categorized as idiopathic neuropathy.  
1415174 tn?1453243103
COMMUNITY LEADER
Oh ok glad the Syphilis test was negative. CMV is past infection not current so that isn't the problem. Yes I wouldn't worry about HTLV 1 either It it more often like a leukemia. It doesn't cause pain like this. But then you were diagnosed with cidp.  Have you seen a neurologist in India? Do you trust the diagnosis you got? If you have it you need to get better treatment to prevent further nerve damage. It is like MS. So you should see a good neurologist there to be sure you have it. Did they do a nerve conductivity test on you before? Or how did they diagnose you?
mkh9
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Avatar universal
Yaa sis this is me only worried5678..i havent been on medhelp from 2-3 months..and i hv formatted my mob so i hv lost all the passwords..u told me earlier to check for syphillis by fta method but i couldnt find any lab ova here doing test by fta method..infact they did checked through tpha method..I have heard that tpha method is also reliable..i have checked for hiv by 4th generation,hep c and hbsag by elisa and syphillis by tpha method at the end of 7 months all came negative..and after 8 months i did hiv 1 rna qualitative pcr which also came back negative....Because of my pain i hv to come bk to india..i have met infectious disease specialist, he told me u have done enough testing for hiv,forget about it..he told me my tests for hep b and c are also conclusive than what else is causing all this things?he told me not to corelate all things to hiv and other stds..i asked him about htlv because it also causes neurologic problems..he told me its not possible that i have caught htlv sexually and its very rare....but because of this continuous pain i am not able to forget about hiv and all sis..do u think chlamydia and gono can causr this much of symptoms?my cmv igg was very high at 225..i dont know whether i have caught cmv during that exposure....what should i do further sis?please guide me
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
The symptoms of soles and palms being red is a sign of secondary syphilis. The test for Syphilis (RPR) is is 20% false negative so you should get a FTA antibody test. If it is positive then you can get treatment. It may not be that and may be only neurologic but it is worth checking into. The only other thing is reactive arthritis due to bacteria in the joints. I would try the FTA antibody and if that is negative think about seeing an infectious disease doctor if you haven't yet. The Lyrica can still help with the pain in the mean time. Let me know how the test goes. You are not the same person as worried5678 are you? If so let me know.
mkh9
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Avatar universal
Hey buddy i got viral pharyngitis and fever 2 weeks after exposure and right after that i got severe pain in my knees feet arms back..First i thought that this symptoms ll subside in few days..but day after day my symptoms started to worsen up..i got constant burning pain in both soles of my feet along with electric shocks like pain from feet to butts..pain is horrible..yaa my doc checked my esr and crp levels because of my pain..both came hugely elevated..esr was 45 and crp was 48..it took 5 months for them to come at normalvlevel....both my soles and palms have discoloured from white to dark red this thing freaks my mind....my neuro has prescribed me lyrica and amitrypiline for nerve pain....one mistake and i am suffering very badly from last 8vmonths....next year m getting married but i dont wanna infect my fiance because my symptoms arent subsiding and doctors arent able to diagnose..
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Avatar universal
Hi friend even am also from India. Firstly I advice u to leave ur fear of hiv from ur mind.ur conclusively negative don't worry. I assure you.
Can u list out all ur symptoms which u have faced from starting in a single message. In one of ur message I saw ur crp as 48 Wat is the reference range of that test.
Have you gained any weight.
Do u have any mucous like saliva in ur stool.
Do u have foamy urine.
If u have any availability please go with these tests
1) Urinalysis
2) comprehensive metabolic panel
3) quantitative nephlemetry or immunoglobulin panel.
Thank you. Even am also in same situation as u.
I will tell about mine next
Helpful - 0
Avatar universal
Hello sis how are you..hope good,,i am here in india right now as i couldnt work in gulf because of pain..i have tested for hiv hcv hbv and syphillis again after 7 months all came bk negative :(..what shud i do now..and lastly i have done hiv1 rna qualitative rt pcr after 8 months which came back negative again..m really blanked because my symptoms are worsening day by day..sis do u have any idea why my palms and soles have gone completely reddish from whitish which were earlier before exposure?and should i keep on testing for hiv till it comes back positive?:(
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1415174 tn?1453243103
COMMUNITY LEADER
I agree about the syphilis test. You had that done already but get the FTA since the other test you had can have false negatives as I mentioned before several times.
mkh9
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Avatar universal
If you get a syphilis test and have access get a PCR test.  Then there will be no doubt about antibodies developing.  
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1415174 tn?1453243103
COMMUNITY LEADER
Yes you are right. So, Good to get a second opinion.
mkh9
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Avatar universal
Thank you sis for the reply....m going back to india next week..will consult one good neuro over there and ll try to find out..age is not an issue sis..m just 27..at my age neuropathy is rare..and my nor my mom or dad are having neuropathy....no other stds causes neuropathy right sis?I can be 100% sure that m hiv free?
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
I think it is a coincidence that you got the neuropathy after the exposure. It can be genetic or sometimes these things come on with age, it can be autoimmune issue. They still need to treat you without knowing what caused it. It is necessary to treat you or you will get more nerve damage. You may not ever figure out the cause. You can ask the neurologist for treatment and at the same time may ask what the doctor things the cause is. Tell her you had an exposure and ask if there is any link. Also, ask if there could be any virus or bacteria that could have attacked the nerves to have caused this. The main goal right now is to stop the nerve damage and stop it from getting worse and make you feel better. Getting the diagnosis of why it could have occurred may have to go along side treatment or come later.
mkh9
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Avatar universal
Yaa sis I know its neuropathy causing this much of pain to me....but all of sudden it happened after that exposure....it can't be such a big coincidence right?:(....and neurologist can't do anything without finding the underlying cause....I have sern that diabetes and hiv are the 2 main causes of neuropathy..I don't have diabetes nor having any deficiency..what cud be the reason now :(
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1415174 tn?1453243103
COMMUNITY LEADER
Yes I'm sure it won't change. It is the neurological problem that the doctor said you have that is causing these problems. Are you being treated for it. Sometimes you can go into remission if treated.
mkh9
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Avatar universal
Yaa sis that was 4th generation duo test manufactured by benesphera of avantor materials....m also having loss of muscles in my arms and legs:(..this things are freaking me out....muscle twitching every now and then..I hope this nerve pain doesnt become life long :(....and hope my 4th generation test at 5 months doesn't change....are u fully sure it won't change sis?
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1415174 tn?1453243103
COMMUNITY LEADER
No if you had a negative 4th generation test it won't change.
take care,
mkh9
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Avatar universal
Sis m coming back to india my native place in 2 weeks..I will meet id specialist rheumatologist over there..my symptoms are getting worse....every doctor I see over here tells me its all anxiety and psychological effect going on:-#..but I know my body very well..the pains which m experiencing qre real..I told them does anxiety causes redness in palms and soles..they werent having answers for that..this burning and stinging pain is screwing me up..i hope my 5 months negative 4th generation rrsult doesn't change....
Helpful - 0
1415174 tn?1453243103
COMMUNITY LEADER
The neuropathy I am referring to is what you said your neurologist said you had which is the cidp. It is more of a demyelinating disease. But that was what I was referring to. You need to ask the neurologist for treatment for this. It is treatable.
mkh9
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Avatar universal
Sis one more thing..neuropathy occurs with just 2 main diseases often..one is  diabetes and other is hiv..I am not having diabetes..now only option left wid me is hiv :(..I think m that rare person who tested negative upto 5 months and then will turn positive later on :-#..m blanked..this pain is really terrible..I can't even walk properly or sit or up
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1415174 tn?1453243103
COMMUNITY LEADER
No you should be clear of Hepatitis too. You could recheck it but your last test was long enough. If you have the money or insurance to do it a 6 month test for both Hepatitis B and C antibodies again, can't hurt but I don't think that is what is causing your problem. You could also test for Lyme's disease. Have you ever had all the STD tests done like Chlamydia trachomatis and Gonorrhea etc.? If not I can mention some others but I agree with the neurologist that it is a neurological problem. You should ask that doctor to explain it more so you can understand it or look it up on line.

http://www.ninds.nih.gov/disorders/cidp/cidp.htm

If you trust the neurologist that is the neuropathy you said they said you had and is probably causing most of your symptoms. But I think it would be good to test for the FTA due to your symptoms. If negative then it probably is due to the cidp and you should get treatment for it.

take care,
mkh9
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Avatar universal
Sis one more thing I wanna ask....Can we do viral culture test to find out if actually its a virus although unknown causing this kindo problem to me?I just saw today that viral culture tests are helpful in identifying virus if present in body....and if not than what kind of advanced test shud I take to rule out or in any kindof virus which is causing me all this?
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