Over a year now, still no diagnosis!
 

Hi Folks! Thanks in advance for your help...and I need it. First let me say I empathize with all of us on here who are dealing with health issues, diagnosed as well as undiagnosed.

I am a 42 year old man with girlfriend.

Im hoping what I am dealing with sounds familiar to someone. Ok, so a year ago I suddenly had what felt like an attack on my body. Tingling in feet and hands, then nausea, then twitching from head to toe. I felt nasty for weeks. Couldnt eat much due to the nausea and lost weight quickly. Never vomited nor have diarreah. Jetted to the doctors, who said bloods were normal. STD tests revealed only Herpes 1, which I never knew I had. My left arm and leg were noticeably weaker..to me. Not to the docs nor anyone else. I freaked. I thought the worse. Neuro docs did mri, bloods, eeg and emgs...all normal. Then the weakness all over began. I felt disgusting. Felt crawly all over...face tingled, everywhere tingled...just nasty.

So many bizarre symptoms cant list nor remember them all unless I look at the papers I wrote on when i went to the docs. Neuro doc told me that when doctors cant find a reason...they call it a virus. I believe that. Ok, so I noticed that my left side was the primary side of discomfort....now since March this year...my right side is going through all the same things as the left..feet hurt, heels tingle, achilles ache, feet still twitch on the soles...right leg and arm are feeling weaker intermittently. I think a virus is going crazy inside of me and attacking me first on the left, now also on the right side. I fear that my legs and feet are getting worse with no diagnosis and so far the docs are stumped.

Does ANYONE have any ideas? This has been a crazy ride. I know I might have made it sound simple but trust me its just for the sake of the readers and time. Thank you so much.

Hi how sure we're you on the diagnosis of herpes? I have Behcet's syndrome which can involve genital ulcers. I have heard of people being misdiagnosed with std's when they have Behcet's. it is so rare that docs don't think of it. A lot of doctors have never heard of it and some mistakenly think only Turkish/Japanese people get it because it is more prevalent in those areas but some of us do get it who are not from that ethnic background. I would encourage you to check the diagnosis. I get a lot of pain in my feet and tingling, loss of sensation. There are a myriad of symptoms you can get with Behcet's - do you also get mouth ulcers?

Hi just read your post again and you say herpes 1 which is not an std....but diagnosed at std clinic is that right? I am wondering even more about Behcet's now. Have a look at it online. Not sure where you are but there is info online for uk and us societies which give you a list of possible symptoms but important to remember that no one person will usually have all of the symptoms. Also it often gives you worst case scenarios - people can have very severe forms of the disease, many have milder forms. Some people can have systemic forms of the disease and some only their eyes are affected. It's very widely varying. But if you have ulceration it's a very strong candidate.