Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New user, newly diagnosed

I've learned more than I ever wanted to know here about something I'd never heard of until I was diagnosed by MRI almost a month ago. The report says: diffuse degenerative spondyloarthropathy. This started in January with pain in my shoulder and I lost the ability to raise my arm. Then I started having trouble breathing and was finally diagnosed with pericarditis with effusion the end of July. I had to have surgery to have a window put in my pericardium in order to drain the fluid. The doctors still haven't found out what caused it. The biopsy results should be in soon.

During surgery they tried to drain the fluid off my lung, but my lung was stuck to my ribs and the lung collapsed. I was hooked to a vaccuum cleaner on blow that was on turbo boost or something for a couple of hours until the lung reinflated. I felt like a dog with its head out the window, lips blowing away from the teeth. You get the picture.

After the surgery, my left shoulder blade sticks way out when I raise my arm. I can at least pull my arm straight up, so that's something I've gained. I was still having muscle spasms in my neck, so my GP sent me for an MRI on my shoulder and cervical spine. GP doesn't seem to concerned, says exercise, use good posture and have shots in the spine when the pain is uncontrolled. Everything I've learned has been online, and the only useful information has been here.

The chiropractor says everyone gets this. I think everything I've had is connected to the spondyloarthropathy (what IS the abbreviation for that?) My liver enzymes are elevated and blood sugar is a bit high, blury vision, inability to focus (that's been going on for a few years.) The opthomologist says my electrolytes are "screwed up" and he thinks I have reactive hypoglycemia. I got a glucose monitor at his suggestion and my blood sugar doesn't waiver much from 95.

The GP wants a liver biopsy, the liver guy says lets do a few more blood tests and wait a month. I'm feeling like a science experiment.

I'm 54, female, and have never had anything seriously wrong. This is pi##ing me OFF! Plus the reality of it terrifies me. I saw my MRI and could see the little hook things on my vertebrae that are swollen. Does this mean I'll have fusing soon? I've most likely had this for a long time, but this would be my first "flare." I'm in my second year of college and am wondering now if I should even bother to finish.

Thanks for letting me ramble incoherently.

Beverley

Hi Beverley,... and Welcome to KA!

I'm glad you found us and have found this site helpful. It's full of genuinely wonderful folks, who can really appreciate your fears.

I think Spondy works as a good short form. I highly doubt your Chiro is correct in saying everyone gets this. Although I'm not familiar with how Diffuse Degenerative Spondy may differ from AS, I bet there will be enough commonality that the info you find here should be helpful, not to mention all the support.

The little 'hooks things' visible on your MRI are likely a sign that some degree of fusion has begun, but does not necessarily mean it will continue. The fact that your's is such a late onset is good news. Controlling flares is important in preventing fusion, but your treatment options may be limited if you're liver continues to show elevated enzymes. If you're not on any meds yet, then I think waiting for more blood test results before doing a biopsy would be a good way to proceed. I've had mine elevated once, but they showed normal again on a second set of tests. Curious if they did a genetic test for HLA B27?

We've had a few discussions about using a Chiropractor, and you may find it useful to do a quick search and read the varying opinions on this... worth giving serious consideration and asking for your doc's opinion too, before continuing.

Sorry to hear you had to go through such a tough surgery. That sounds awful and no wonder you've been scared. I hope you are recovering well, and will find some comfort here like so many of us have.

Thought you might be interested in some more reading:
http://www.nlm.nih.gov/medlineplus/ency/article/000182.htm

Take care,

mig

Edited by mig on 10/17/04 01:27 AM (server time).

Hi Beverley!

First off welcome to KickAS! Sounds like you've had a rough time of it, sorry to hear that.

Next , I've got warning bells about your Chiro. I've had both good and bad experiences of them, but until you know what is really going on i'd not see one for now. Mine went very pale when my diagnosis was confirmed. He'd been manipulating the neck alot.......whilst you may get some releif it can make things worse, and there's risk of damage to nerves, blood vessels discs joints etc.....and in SpA's there's a higher risk of things going wrong.

A lot of Dr's and Chiro's have very limited experience of SpA/AS, it's not rare but not that common either. My ex-chiro has only had 3 prior in 14 years with the spinal variety. So unless they are a good rheummy specialist they probably have little experience and no one has it the same way twice!

Med Abbrieviation for Spondy is SpA. AS is a type of spondy with the fusing, not everyone with SpA fuses. So the aim is manage it exercise and stop the fusion....if only it was that simple.

Hooks on your spine, maybe early spurring. Chiro's are good at finding those. The SpA disease is inflammation of soft tissue on the insertion points to the bone. You can get that anywhere not just the spine. You can get it in the disc and even through the bone. Bone is deposited on the inflammation, and over time this builds up.

It's not uncommon for us to get eye troubles, as a result of the inflammation. Now when my eye's blur/double it's a warning of a flare......after a while it's a toss up anti-biotics or steroids which way?

SpA is linked to other conditions including Psoriasis and Inflammatory Bowel Disease eg Chron's and Colitis. It can run in famalies.

David











IBD=It's Been Dreadful

YOU MUST FINISH COLLEGE, NEVER NEVER GIVE INTO THIS DISEASE.
I have to agree on every bodys opinion on chiros, you should be doing stretching exercises, not trying to "crack" your way out of it.
When this gets difficult find some one who is a hydrotherapist, stretching execises in warm water is so beneficial and you will find the exercises are not as painful.

Hi, Beverly! Welcome to KA!

Hopefully, you will find here the information and support needed.

I, too, have had pericarditis. Luckily for me, the drainage that you mentioned was unnecessary. Instead, I received large dosages of ibuprofen, which according to the second ultrasound reduced the swelling. I noticed that I was especially fatigued for at least two months after my hospitalization for pericarditis.

I attributed having pericarditis to the taking of sulfasalazine, which was the first intervention (rather than just palliative treatment) that my rheumatologist attempted. Nonetheless, a previous KA participant told me about having pericarditis without taking sulfasalazine. He attributed such heart disease directly to having Ankylosing Spondylitis. Nor is it the only heart ailment that people with spondyloarthropathies have reported.

After the incidence of pericarditis, I stopped the sulfasalazine. I then tried methotrexate (MTX), and, eventually, anti-TNF therapy.

Best regards,

jcwinnie

Thank you all for your warm welcome and words of advice.
Mig, I've seen that article and when the dr's had me on a wait and see basis re: pericarditis, I finally said, "fix me by August 16! This is NOT interfering with school!" It fits with what Rat said, "Don't let this interfere with school."

I did the search on Chiros, I haven't been to mine in a couple of weeks and I don't notice much difference, so I doubt I'll be going back.

I started going to a water aerobics class a couple times a week and that is helping a lot.

I've written SpA down so I can remember it, thanks David. I don't know if anyone on dad's side of the family had this, they "have better things to talk about than their medical problems." I've already lived longer than Dad, he died at 52 of hodgkins. Our family does cancers of many varieties, but I knew I'd have something more exotic. ha!

jcwinnie, thanks, I knew I was right!! :) I kept asking the surgeon if the shoulder problem had a connection to the pericarditis and he said no, just coincidence.

BTW, I'm on 50mg Indomethacin twice a day for the pericarditis. I stopped it for awhile to see if the brain fog and vision would clear, but it didn't so resumed it 10-13. I haven't been tested for HLA B27.

Another thing - I'm having hot flashes. I'm a year+ past menopause and never had hot flashes with that, is this another undocumented feature of SpA?

Again, thank you all for the info and support.

Beverley

Hi again Beverley,

I really don't know much on this subject, but just from reading, it appears that Pericarditis can be caused by an existing inflammatory condition - an autoimmune disorder. Since spinal changes are usually slow to appear, I'd hazard a guess(?) that in your case the Pericarditis was secondary.

Low level fevers are a symptom of both inflammatory illnesses and pericarditis, and so would be the most likely explanation for hot flashes. I get feverish on and off throughout the day and have experienced this for years.

It is thought that female hormones likely have a 'protective' effect and may help delay fusion in females with AS. Maybe an underlying disorder is only now becoming more evident since you're post-menopausal? With AS, women don't always present a 'classic' pattern of symptoms (like men), so testing for the rheumatoid factor and HLA B27 could be useful.

In case they didn't mention this, it might be a good plan to completely avoid alcohol until you know all the results from liver tests.

Take care,

mig

Hi mig, it's me again,

My kids always joke that I've got a drinking problem - can't get the second one to my mouth. Dr's have told me no alcohol, it's not a problem for me, it's mostly too nasty for me to bother drinking.

The fevers with the pericarditis were hitting 103. With these hot flashes, I actually break into a sweat and turn red - it only lasts about 5 minutes and there's no fever. I'm starting to connect them to eating bread, and with the NSD that is posted here, I do believe I'd best be changing my diet. I was on the Carbohydrate Addicts Diet for several years and controlled a lot of pain and brain fog with it. I hit a stall and went off the diet and here I am.

I agree about the inflammation and pericarditis link, it makes way too much sense. It took 5 months for the pericarditis to be diagnosed. I tested negative for rheumatoid arthritis which is a known cause of pericarditis. My ESR was elevated which the GP attributed to my food allergies. My next appointment with the Cardiologist is Nov 10, I'll discuss it with him then. I need to get ALL of my test results and have everything in a notebook as I trudge around to the various doctors.

I'm so glad you are helping me work through this.
Beverley

Beverly,

Hi ,just reading yuur post? What food alergies.....? Can you post these please! I'll explain that after......

Also I get hot flushes, and some of the NSAIDs cause those, esp the older COX1's. Feldene etc.

As for the pericarditis, anything itis, is inflammation and that's what the game is I'm afraid, keeping that down.

You had any other recent infections, trauma etc which might have set this off.

Do you have a history of aches and pains cold etc which no go anywhere or linger?

Do you have bowel disease in the family, apart from the Big C?

I endorse the hot water stretching esp early on, you can really improve things. When it;s bad I prefer a good soak before attempting anything.

David

IBD=It's Been Dreadful

Beverly,

I just wanted to say WELCOME TO KICKAS! and hello from another Californian! It is great to have you.

Cristina in CA