VINDICATION!!! A diagnosis!!!

Hey there LC....

Not sure if you saw my other post on your other thread...but just so you know that having arthritis can cause the positive reult for this particular antigen. Same thing with having inflammation of the sacroiliac joint...

And I thought that your Dr. did already diagnose you with arthritis from your MRI, correct?

So it doesn't always mean that you have AS as they will use a physical exam along with the MRI you had and any X-rays to determine this..

And there is a Mod on the Fibro forum who has AS and she is doing great with a muscle relaxer as well as supplements in case that turns out to be the case...the good news is that many can treat any symptoms of inflammation with steroid injections or even high doses of Ibuprofen and PT.

So just wanted to say to take things one step at a time and I'm sure a Rheumatologist will be able to help out with everything...

Post Edited (Snowbunny21) : 2/20/2013 3:26:43 PM (GMT-7)

Re pain meds, I'm on tramadol now, but I really don't feel any effects from it. 800mg of ibuprofen 3 times a day sometimes helps (PCP doc has okayed the dosage). But doubling up on the norco breakthrough (5/325) for a total of 10mg seems to be the only thing that makes anything move. 5mg might as well be an M&M. 10mg makes me a little fuzzy for a few minutes, but I then can move around if I need to or sleep if that's what I'm after.

You have to remember, chronic (20+ years) pain, in doing research I've found that patients that test for this are often unresponsive to NSAIDS (for pains, maybe the anti-inflammatory effect could work), yet still get the side effects (heart risks). In addition, I have family history of heart disease on both sides. Plus I'm 6'2" and 250 lbs. 5mg of hydrocodone extra is not going to make me "have the vapors" and faint away on the settee. Might make me drowsy, but that's about it, and I'm NOT driving at that point anyway.

And Lexi, That Opthamologist is on my Christmas card list forever. (note to self, start Christmas card list) In fact, I'll probably buy pizza for the office and have it delivered. Everyone there was top of the line. And I still get calls from the eye doc at WalMart every few days just to keep up with the case, and to see if there is anything he can do. He's and his staff are getting something too.

I hope a rheumy can get you in quickly.

So glad you have an eye dr who cares.

I've been on high doses of pred for over 10yrs. I know all the bad side effects(I've been diagnosed with Cushings now), but it can be life saving. I try to limit the carbs and sugar in the house. Now that I don't have a feeding tube, I try to swim a few times a week. It's not pretty and I'm not healthy, but I do it. If you are looking to exercise in any way, definitely talk to your dr. There are times that I'm pulled from the pull due to low counts, or when the heart/lungs act up. Of course, the answer is usually more pred:) Hate the cycle, but it keeps me here:)

Eye issues are so frustrating. I, too, have major eye involvement of my disease. I see the dr tomorrow to have my blood drawn for autologous serum drops. It has to work. There a few rheumatic diseases that can seriously mess with the eyes. I think if my eye dr had been more proactive when I was a kid, I would have been diagnosed earlier with JRA. Uveitis is a hallmark of the disease-it doesn't often occur in isolation. I think it's great that you want to thank him. Hopefully he'll work well with your rheumy and continue to help you in the future.

Let us know how the appointment goes. I hope pain control is addressed as well. You deserve it.

LC, glad to hear you will e referred to a rheummie. A word of caution, the positive HLA B27 does not necessarily mean you have AS. People can test positive with the HLA B27 and do not have AS. The dr should have told you this. When starting down the road to AI diseases, one positive test is not how they accurately dx someone. there are false positives in many of these tests. I know a tad about AI diseases, I have 4 confirmed. When you get on the path to AI diseases its like riding a roller coaster with the constant ups & downs.

In the event the rheummie gives the dx of AS, expect to be told exercise is very important, you have to be active, take an NSAID and in cases of severe AS sometimes they will try something like Remicade. AS is inflammatory arthritis.

Good luck on the appt....Susie

That is what they do with many that are dx'd with AS, exercise & OTC meds. You will not need new MRI's I am betting since all of yours is less than a yr old, the rheummie will need to review the films for sure. If its AS he will know what to look for in the MRI's as it will present itself on the films.

My dx's were all by accident with very long lengthy history of problems that were completely ignored & over looked. Thats why I am saying with AI it is not as cut & dried as you are thinking. I have had many positive tests for different diseases but do not have the disease itself. Its a crazy world with those. This is why I am saying do not get your hopes built up on a test that is not 100 % that you have AS. I have seen lots of people become so depressed when drs start throwing out guesses and say well lets test for this and get one positive out of five different tests. The let down gets to you after awhile. Like I said, even if it is AS, the treatment is an easy one but you may not like what you are told the treatment will be. I have an excellent rheummie but it took a couple to find him.

Take care....Susie

The issue is that it's progressed past the advil and exercise route. I've been hitting them on the head with that for years. There's visible damage in the MRI and on plain films. I darn near needed a lawyer and a court order to get those done. My symptoms suddenly getting worse over the last month or so finally made an ER doc sit up and take notice, and at least order lumber xrays, then immediately order MRIs after seen them. After all of that, my main doc does not want to see me until June. Though that may change/

Then those films and reports languished until one day I literally thought my eye would pop out of my head, and I ended up in an ER and a diag of pinkeye. I followed up with the eye doctor at WalMart because he could handle something like that, but he knew something serious was up when he put everything but hand sanitiser in my eye to try to dilate to pupil and it wouldn't budge. He's the one who got me in to see the opthamologist who nailed the diagnosis so far. He's going to be consulting with Dr Marblemouth and hopefully get me transferred to a more experienced resident at least.

So if had not affected my eye, I would have never got this far. At least a road to go down. A rheumatologist was never even mentioned before this week. I consider this a major step. I know the auto-immune stuff can be hit or miss. And that's just for a "real" diagnosis. But progress. For you it's a familiar trip. For me, it's progress. Let me have it.

CONGRADULATIONS.....I know is this a lot off of your shoulders and mind (especially). I hope you use it well.

Doesn't my post sound almost crazy? giving congrats on a diagnosis. But this is the medical world we live in.

I became sick with Empyema that caused an intial 30 day hosp stay and removal of part of my left lung and 4-liters of pus only to find out a couple of days laters that everything removed from my lung came up negative... All of my doctors wanted to know if I had traveled to Asia,Africa or South America. NO I did not. to this day afters having both lungs collapse and 20+pneumonias and many cases of pleurisy plus 28+hospital stays at world famous hospitals no one can tell me why I am still sick. Why my chest xrays look so bad with all of the lung nodules and interstial opacities and the fevers I get every 3 to 4 weeks for the last 7 years.. To this day Feb 22,2013 no hospital-Johns Hopskins-Duke-University of North Carolina and the National Jewish Hospital in Denver have no clue as to why this happens...

Good luck RB

This doesn't include my orthopedic problems caused by all of the prednisone I was given..

 

LC....It's really only when someone is on steroids long term that problems "maybe" start to develop. But for short period of times throughout the year, it shouldn't be a big deal. I've been doing steroid treatments (both injections and oral ) at least 3-4 times a year for over 11 years now without an issue.

And my dog is on 20mg of Prednisone a day for his hip dysplasia and they do liver panel tests twice a year and so far so good:)

When you say there is "visible damage" on your MRI....what are you referring to? I was thinking that there was just normal aging spine issues and arthritis? I didn't think there was anything they were concerned about to send you to anyone else.

As we said, try not to project so far into the future as just having this this antigen does not mean that things will develop into an AI and it could easily just be from the arthritis that you already have.

But as we said...even if it turned out to be AS....there are many treatment options and they will likely set out a good exercise/PT plan for you as it's not about trying this once...it's doing it everyday to take care of ourselves and have things not progress. That is for any of us with spine issues.

So use that one day at a time quote that you have on your signature....it really can be helpful in times like this:) I know it's hard when you are having pain. We all empathize with this....but just don't want the anxiety to get to you...

Post Edited (Snowbunny21) : 2/22/2013 10:33:57 AM (GMT-7)

I am confused now, seems like the last MRI you had done recently, they said there was no evidence of Cauda Equina, there was arthritis, some hemangiomas in the thoracic spine and what could be considered beginning of some bulges in the lumbar spine. This what you wrote in a post here at the forum when the Cauda Equina scare was going on and your finally got someone to tell you the results of the MRI. Have you had another MRI since the above? I believe this one was done in December.

LC, you gripe a lot about your indigent healthcare, but just from since you first started here at the forum from what you have told us that has been done such as a couple of MRI's that is more than a private insurance would allow in a year's time. In reality they have done things with you in trying to get answers including repeating some of this stuff. They may move slow but you will find it that way in a lot of cases, not just indigent care. Were you ever covered under an HMO plan when they first came out, they approved nothing in ways of testing or seeing specialist because it saved them money and they got away with it for years. There are a lot people that would love to have indigent care because many have nothing. Alot of drs will not take Medicare either because they pay hardly anything and finding drs willing to take it is becoming more difficult. I am afraid you may really be upset whenever you are eligible for Medicare. I have seen some members here from Canada have to wait a year or more to see a specialist of any kind or to have wait a year or longer for an MRI. If you have read much about arthritis then you know it can be a very painful condition. Most regular drs at est will say take an NSAID. I am on Mobic which helps somewhat, are you on an NSAID? If not ask for one to try.

I can tell you first hand if you go on regular Medicare when you are eligible for it, you will find they do not pay for everything and many things are limited. I stay with regular Medicare because none of my drs will join their advantage plans which is a HMO. I treat with 6 specialists and have treated with them too long to quit & find someone else. They will take regular Medicare but not the other. I do not like being on Medicare but its better than nothing.

Take care......Susie

Lexie I have said the very same thing, does our care health care suffer as a result of being on Medicare, I say yes. The drs know they are not going to be paid but a small amount and they need to see us quickly and get to the next patient to make up the difference.

Medicare is real cut & dried, there is no gray area with them. Medicare many years ago was one of the best companys around and they paid at a fair rate to the drs. Now, it rates right up there with Medicaid because of all the major cuts to drs & hospitals. I have a supplemental policy which helps, if a person stays with regular Medicare you need a supplemental to help offset some of the costs. eve with a supplemental you still pay out of pocket.

Its easy when you turn 65 you get rewarded so to speak.Your supplemental policy to Medicare pays for your deductibles to where you pretty much pay nothing out of pocket if you buy the right supplemental plan. We use AARP for the supplemental plans.

If a person knows how to use a computer they can navigate the Medicare site as it is user friendly.

When applying for SSD they go over your earnings with you. That would seem to have been the time to correct any issue. They asked me if each year was the amount correct. Good luck on getting them to re-open the earnings portion.

Take care....Susie

Just got my appointment letter in the mail for the Arthritis Clinic (This place has an Arthritis Clinic? Why in the blue hell didn't someone bring THAT up sooner?) for the end of April. Guess we find out more then.

Susie, addressing your post from yesterday, you say that I gripe a lot. Well, sometimes I do. Because all of this was available to me before, and I could NOT get Dr Handlebar-Moustache to make a forward step in any direction for almost a year. Here is my primary care physician, the one who is supposed to be looking out for my best interests, finding the resources to put me into (like knowing there's a clinic in the same freaking building that does nothing but arthritis stuff and referring me there) and the breakthroughs I have had come from an ER doc, and an opthamologist.

I've been dealing with my pain the best way I know how. I have had to become the squeaky wheel. I am now "that guy." Because this is my life. Because these are my nerve endings. These are my bones and muscles. And until I get answers, and I dont give a hoot how it's paid for at this point, and some relief, which I know is out there, I will continue to work on this fool's last nerve.

One of my motivations now is to get on another doctor's service, because this guy shouldn't be treating fire with water. I need to find out how to do that and make it so, because I really don't trust him anymore.