Reiter's Syndrome? or Please help!

[SNAFUED]

Hi Folks! I just joined.  I am a little lost as where the best place to ask for some help is, so I am just starting here. I am at my wits end and I mean that in the literal sense. I have been through allot, but this is getting to be too much for anyone to take for so long.

I have lived through Spinal Surgery, Encephalitis and the wost case of Salmonella the doctors had ever encountered.  That was in the early 90's, 1994 i think during a huge outbreak in the Midwest. I bled internally and was hospitalized for 12 days. The docs said it mutated. It was in 1997 I caught encephalitis in Hawaii and later had   to also have spinal surgery. I am now disabled. But recently I have had an onslaught of new symptoms. doing my own research it seems Reiter's syndrome would explain nearly every problem I have had that has gone undiagnosed. Currently the doctors just give me five minutes and a prescription.I cant even think let alone explain to them all that is happening or my long history.

My Current symptoms which have been getting worse daily, and i think peaking  are --

The jitters - I do have a history of neurological problems. But any sort of stimulus, good or bad, and my body shakes. I get flush. Stutter, have trouble even walking.  My nodes around my neck swell visibly. My face turns red. I get streaking sharp pains where the swelling occurs. This also happens in the middle of my chest, in that spot in between your rib cage.

I have severe digestive issues. I often vomit in the morning and have problems both urinating and bowl problems. This AM. I had ten bowl movements.

I get restless leg syndrome so bad, I sometimes do not sleep for a few days. Its so annoying I want to crawl out of my skin.
.
I have a sty or growth right near my eye that appeared shortly after catching Salmonella. It gets bigger and smaller. Its the largest I have ever seen it. Once it burst and felt like acid in my eye.

I have light sensitivity that was causing seizures, but I am now on Kepra, which helps. But the light sensitivity still comes and goes daily.

Acid Reflux. Horribly painful.

I have been a chronic pain patient for 10 years. The pain that comes with the swelling is new and different and is so sharp and quick, meds don't do anything.

I have severe anxiety attacks, and this is not new, but the severity is and they have also changed. the occur when I get flush and the swelling comes. these attacks can last 4 hours or all day, or i can have them on and off throughout the day. extreme anxiety always comes with this, as I am normally someone who communicates with my friends etc. My life seems to just be fading away.

Not one day goes by where I don't feel I should go to the ER.

I have given up driving. I am afraid to even pick up the phone, as I shake and have trouble speaking when the swelling starts. Sort of constricting my throat. I need to fill out my medi-cal review and am unable to do it or gather the paperwork.

I have seen an Endocrinologist.
A Neurologist
And my normal MD as well as a therapist that is very good. She believes my current severe Anxiety is biological and not psychological. Personally I think its both. The more stress the worse i get. That just makes sense.

So I read about Reiter's  Syndrome and saw a documentary where people involved in the same outbreak of salmonella I had -- are having Reiter's Syndrome and other undiagnosed problems. It was a huge outbreak.

I read the symptom list that the doctors go by to tell if you have Reiters. and I have more than you need to be diagnosed. I learned that there is a gene to check. I am leaving a letter for my doctor today as I cant see him for two weeks.

But is it possible that it would not present itself so prominently until now? With that said, over the last ten years I have had other issues that are on the list. A Swollen Prostate for no apparent reason. Swelling etc. Extreme water weight. But they would always go away before they became too much of an issue. My doctor at last visit blew me off but did order some tests to see if any Autoimmune disorder showed up. If it did he would agree to get me to the proper doc, like an immunologist. But of course, it only showed that I am very slightly anemic, another Reiters symptom...? at that last visit, I did not even know that Reiters syndrome existed. These symptoms of jitters, swelling Etc. etc. have been ongoing for 8 months. I had a small discharge from a nipple leaving a brown crust or growth,  and the swelling started there. The swelling moves around at times. The rest seems to just get worse. I am isolating, and going crazy not being able to do anything. Its rare I feel well enough to make it to the mail box. I cant write, or play guitar, i shake too much. I stutter now.
Sorry this is so long. any help or thoughts would be GREATLY appreciated. I am unfamiliar with Reiter's syndrome, but it would explain allot.

Also I do have minor rashes on the tops of my hands, and arms.

Thanks to anyone who read this far... Wishing everyone brighter days.
Peace

[smittygirl]

Reiters is now known as Reactive Arthritis and generally a male disease.  I happen to be a woman and got the disease at the age of 46 from a UTI that had e coli bacteria in it.  I was a marathon  runner and triathlete before this happened.  I know have AS as well, ( Ankoylosing Spondylitis).   My life as never been the same and it took me a good 3 years to accept this change.  Based on all your symptoms it sounds like you have a lot more than ReA going on.   If you haven't already, go to the Arthritis Foundations web site, it lists all 100 types of arthritis there are.  You're right that there are people out there with worse things, but our problems are no less valid or painful.  I hope you find the answers you need to get your life back, I truly understand and can empathize with you.  Best of everything to you.  

Sue

[SNAFUED]

Hey man thanks very much. All this seems so familiar in some ways. I lost everything when I caught encephalitis. My biz, my wife, my house, and my health. I left Hawaii with one suitcase after moving there and building a life I was very much enjoying. i did loose it over that. But after I got through it, I figured I could handle just about anything.
I was wrong.

Yesterday was a bit better. So today I planned to have my sister pick me up to get out as I thought it would help. But then I started to get ill. I awoke to bowl problems, the shakes, swelling, extreme tiredness and the shakes. Its been hard to sleep so I took advantage of my tiredness. Its been a better day then most though, I made it one block to the store and back. Last year I was co-hosting a local radio program, started a local advocacy group for the homeless and had my first three articles published. I cant do anything now. I was not always like this.

I did get the referral I was asking for. This new doc knows my family, and my therapist and has agreed to really look into what is happening. But I have to wait two weeks. It sounds feels like a lifetime. I need to fill out simple paperwork so I don't loose my medi-cal (California medicaid) I have both SS disability because I worked my whole life, and medicaide due to my extreme low income. I cant fill out the forms because I am too shaky. My sister was to help today but will come next week. We also had a big fire here in Santa Cruz, and her daughters house is near it.

My biggest fear is they will never figure this out. I am all to familiar with the system. I hate being scared. Its one thing I am not normally prone too. I freak when I hear someone walking up the stairs, which means they are coming here, or to the apt next door. 99.9% of the time, its next door. I am only scared because I immediately get the contriction in my throat and neck around my nodes when i must talk. The phone is now off.  Once it starts it lasts for hours.

I have played guitar since I was 11. I am 41 and I cant do it. I finger pick allot and my hands simply wont do what I request of them.

I feel like I am complaining and people are dying all over the world.  I have a place to live, food to eat and family. I am blessed. But I just feel like holly hell.

I am ranting but appreciate the ear. Thanks very much Ada.
tim

[spastic]

Hi, I understand the isolation thing all too well.  When I first started getting sick, I just wanted to hide it from my family.  I would lock myself up in my bedroom and I put black plastic on all my windows to block the sunlight.  I just kept telling them I needed to sleep, I worked nights so they just figured I wanted darkness to sleep when all I really wanted to do was sink into the darkness.  

I am glad to hear that you have family pulling for you.  You have a friend in me if you need to talk.  Sometimes a person just needs a friendly ear or in our case a friendly text.

Your Friend,

Ada aka Spastic

[SNAFUED]

Thanks,
I did drop off a letter to my doc as its hard to even speak, asking for emergency help and a referral to a specialist. He has not even called yet. I know I am not crazy... but in all honesty it feels like I am. I have family help and they are pressuring the doctor too. i just cant handle much more of this. I thought I had been through the roughest parts of my life, encephalitis was no picnic. It was years of recovery. But this is so hard for them to figure out, I end up locked in my apt. afraid to even walk to the mailbox as a shake and stutter and my neck swells and constricts my throat. The ER. is horrible here and just refers me to my main doc. They may give me a shot or something for one day of relief. i fear they will think I am going nuts and the ward here is like prison. I am sure he will call soon. Thanks, just communicating helps a bit.
Peace to you
T

[spastic]

Hello and Welcome!  First off I want to tell you that you are NOT crazy!  You know something is not right with your body.  I cannot stress enough how important it is to never give up on yourself.  

I would call and see if you can get an emergency consult with your physician.  Take all your information, or print off what you wrote here and take it to the Dr.  If you feel you need to go to the emergency room, go and don't feel bad about it.  I'm sorry you have been through so much.  You deserve to have some answers.

I don't know much about Reiters syndrome to be honest.  I have Still's disease and get some pretty wierd rashes, you can look at my profile and compare, Still's is hard to diagnose as well.  So I truly understand what you are going through.

Your Friend,

Spastic aka Ada