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#277793 - 04/19/17 10:43 AM Life is not good. Who to turn?
worldofme Offline
Registered Visitor

Registered: 08/12/15
Posts: 380
As you know I used to post a lot here before and just stop posting completely because I knew I wasn't going to get better and I'm not.

I have seen every single specialist that is possible from local office doc to High end hospital doc like Penn Medicine.

No one is able to pin point why I am having various symptoms for no reason and why my Heart keeps racing (tachy) for no reason.

In recent years I went from being complete healthy individual to taking BP meds and Beta blockers daily.

No one is able to figure out the underlying cause.

As days progress I end up with more symptoms like severe headaches that don't go away but of course my CAT scan is normal.

Heart pain chest pain, palpitation but of course heart testing is normal.

Why is all this happening? How can it be a post infectious arthritis for so long?

Yes, I bought into the theory in beg it's post infection but really 3 years later?

No one is really interested in fact that a healthy individual goes viral down various medical syndrome. "I don't know", is the most typical answer I get when I push doctors for an answer.

Plus, by now I'm very educated with medical symptoms and disease name so some doctors don't even want to entertain a educate patient.

What to do and who to turn to?

I have taken TNF blockers as many have you suggested, Enbrel, Humira Nothing. They just seem to make prostatitis worse. This clearly is an indication that its an infectious arthritis. Of course blood work is complete normal.

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#277799 - 04/20/17 09:44 AM Re: Life is not good. Who to turn? [Re: worldofme]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 400
As everyone has told you. You can't expect to take a TNF for a week and then panic and leave it. The doctors seemed to continually try to help you as so did the people here, and you pretty much refused any suggestion that can help you because you were off in some lala land dreaming about curing yourself with anti-biotics.

I don't want to be the ass, but seriously, if you are never going to listen to anyone, I don't think anyone wants to listen to you. We all can be stubborn or in denial, but you take the cake, and eat it too.

Keep telling doctors that you know better than them, it's completely evident why you don't want to receive the help everyone is offering. You can't even get your head around the fact that you have AS. Go tell a doctor about how you have had an infection for the past 3 years and let us know how dead he expected you to be by now.

Like really.. Just please, go get some mental health help first because you are completely beyond help.

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#277800 - 04/20/17 12:19 PM Re: Life is not good. Who to turn? [Re: worldofme]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6423
Loc: New York
If I remember you only took the TNF blockers for a week or two? right? You said other symptoms became worse? Did you take even one for 3 whole months???? You sent me many many messages and I answered them, but it seems to never read what I wrote. Please, you need help and perhaps a different kind of doctor would help you calm down.

I am so sorry you are suffering, you can get better.
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#277804 - 04/20/17 04:13 PM Re: Life is not good. Who to turn? [Re: worldofme]
worldofme Offline
Registered Visitor

Registered: 08/12/15
Posts: 380
I took humira for 3 months. Got shortness of breath doc stopped it. Went on cimzia for two months got a rash and urethritis worse doc stopped.

3 month is gold. My main concern is palpitations and arthritis is only spine pain.

My pain us there

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#277805 - 04/20/17 04:14 PM Re: Life is not good. Who to turn? [Re: worldofme]
worldofme Offline
Registered Visitor

Registered: 08/12/15
Posts: 380
Yes you can have chronic infection in your prostate is call slow growth bacteria. Chronic bacteria in body...

What your saying is blood infection. I'm talking about prostate infection.

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#277807 - 04/20/17 08:16 PM Re: Life is not good. Who to turn? [Re: worldofme]
seymour Offline
Registered Visitor

Registered: 06/20/12
Posts: 419
Well if you know better than everybody why do you even bother asking us anything?

We have no answers.

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#277811 - 04/21/17 08:42 AM Re: Life is not good. Who to turn? [Re: worldofme]
guarding21 Offline
Registered Visitor

Registered: 04/26/08
Posts: 10
Loc: Daytona, FL
I have to say you need to see a psychologist. A lot of your symptoms seem stress related, tachy, high bp... The medicines we take does not mean 0 pain, it's suppose to help though. Sounds like you expect to be back to normal over night.
_________________________
Diagnosed maybe 10 years ago, symptoms started in high school. Suppose to take Humira every 2 to 3 weeks but usually delayed longer because I fear shots. Mobic once a day, Loratab as needed.

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#277816 - 04/21/17 02:44 PM Re: Life is not good. Who to turn? [Re: worldofme]
ElinAslanyan Offline
SAA Programs Manager & Moderator
Registered Visitor

Registered: 05/07/08
Posts: 84
Hi all, jumping in and locking the topic. I think any potential productive and educational value of it has been met at this point.
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Moderator:  ElinAslanyan