Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS or NOT is the q!

lee and i back home from visit with rhuemy and more confused than ever. AS dx not retracted but put on hold. he needs to make sure it is AS - since i wrote with all my qs after original dx he says more tests are needed. GREAT! we wanted that. SO, more blood tests as previous results lost - he remembered bloods were slightly high (indicating some inflamation somewhere) but couldnt answer if HLAB27 +/-. he re-checked last xrays showing lots of white areas depicting (he says) inflamation through spine and sacrotic area and curvature. when asked what is the extent of damage to spine he said damage couldnt be detected on xray! (i thought that was the idea of having an xray). he said spasms are definitely NOT connected with AS, NEITHER is it usual for pain to move from say shoulders to other parts (ie lower back, legs, chest, neck) he calls this referred pain OR an additional condition! AND AS has never been known to affect memory/concentration in any way (What then is brain fog and why do so many AS sufferers get it???) when asked about NSD we were told that rheumatologists dont believe in it, saying there is no evidence that it helps. in conclusion there was no conclusion! lee is to be referred to eye specialist to check for inflamation (i guess for any signs of iritis) - and a renal ultrasound cos there was a lota pain today down left side from underarm to hip. no further xrays. no mri, no ct scan, back in 4 months! What for i wonder! will we ever get to the bottom of this? i have had a good read all over this site and lots more and it seems lee is getting v similar symptoms to those with AS. lately, he has been getting pain around his jaw line. can AS flare here too? his legs have also given way from underneath him a few times lately. does that sort of thing happen in AS does anyone know? the bottom line is guys, does he have AS or not? what do u think?
ok. i'm done with venting. now on a better note regarding the NSD. have started lee on strict NSD and although its early yet i think we are getting results already - day 3 over and he is less fatigued and slightly better pain today (tho tonight back again) and a good nights sleep last night for first time in years. as i say, it is v early to comment on the diet, but just reporting thus far. it looks hopeful to me and if it works believe me it will become a way of life.
anyway guys, thanks again for listening and for all ur support:)
sorry this post is so long.
hope u all have a good day/nite wherever u r.
pip

Pip,

My GP and the GI people last week were very sceptical about the diet, how do I convince them that I've been doing the no starch things since 1988? Yet my rhemy thinks it's a good tool if it works, and supports my son being on it.

With him he's on wholemeals etc so he gets carbs. As for the London Starch Diet it may not help everyone but if it does it does! I think the SCD is a good idea until you work out the specific things which cause problems!

I go back onto a starchy diet I flare esp hips, knees and ankles, and the bowel horrors. On the more nasty ones I also get a migraine thing, which has plagued me for years, finally linked to increased uptake on a bone scan in the upper neck........now the diagnosis has moved to axial involvement for all the upper body issues I have....although the disc I have that sit on the spinal cord has yet to be totally ruled out....

Legs buckling and alternating buttock pain, I experience the same things. There are one of the clinical features used to diagnose SpA and AS. AS and the other SpA also can affect the legs either from inflammation of the soft tissues, boney changes or indirectly through referred problems from the Hips and SI joints....

As for the spasms, I get them exactly as Lee described them, pain can and does move around...Shoulder blades, inside towrds the spine or outside near the armpit and shoulder joints...

Often the HLA B27 tests have to be repeated they are difficult to do and some labs only do them on certain days and if the blood has n't been stored properly or is too old it gets lost, had a similar thing happen to me, and the rhemmy spoke to the outpatient sister about it.

B27 is only a helper in the diag I am -ve, I do n't have AS but have Reactive Arthitis from Bowel Disease, which the rhemmy paralled with AS....

Many of us in the SpA family do not or rarely get the elevated inflammatory blood indicators. but some do!

As for xray damage, well everyone I've read says the best prognosis comes from getting the diag before that occurs and treatment starting! That's in all the rhemmy papers on prognosis and used in the outcome indicators such as the Bath Ankylosing Spondy measures and indexes.

Another thing there are other members of the same family as AS the SpA's it's difficult to make a certain diagnosis. Maybe the rhemmy is being a perfectionist.....In Australia the GP can order a rhemmy panel blood test anytime!

I'd go see your GP and discuss this, 4 months is along time! I'd also be looking for a referal to a neurologist if that has n't been done.

What's your impression of the rhemmy? Is he being cautious waiting to see if the disease continues it's current progression?

Sorry Rambling need to walk a bit....PM you later!

David

I am a wife of a man whom I have been married to for 36 years and I can say one thing for most doctors. Our Orthopedic surgeon of 15 years refused to test my husband for any thing . My husband, Vaughn had 5 right knee surgeries, 1 right thumb, 1 right shoulder. Still no diagnosis, but lots of pain and 13 years of physical theraphy, which did no good. AS is a progressive disease that gets worse as the years go on, and with a good Neurologist, just have him perform one blood test. HLAB 27 and they can see with XRays if he has it or not. My husband hurt since before he was 25. His was progressed fast with an injury to his head. Then all heck broke loose. A Chiropractor might help with that part of the pain. There is a TENS Unit that you can get to help elevate the pain. It can be found on any website, type in TENS and it will come up. We have four of them for different areas of his pain. He uses his as a last resort instead of pain medication. We have had several times that the TENS unit was worn all day and part of the night. Sometimes my husband would wear in his recliner so he could get some sleep. Then we found this remarkable bed called SELECT COMFORT Beds.
They make the world of difference to him. Totally great. Expensive, but great.
The select air beds were so great, we throwed our Posture Pedic away and never went back to it. We now have three Select Air Beds and one for the fifth wheel.
Nothing is better than the Bed. He actually can turn and toss and still not disturb me during the night.
If you get through all of this , then the next hard part is getting disabled by the federal goverment....SSDisability....It took us 23 months and a lawyer to get his started.
First time, was he was too young and he had too much education. So we had to hire a lawyer and she got 25% just to refile the paperwork.
It is a bureacratic world, and Social Security doesn't want to pay if they don't have to.
Sorry this note is long, but was up late so thought you might be interested in some of the other stuff.
Ann

Hi Pip, i know it was probably rhetorical, but
(What then is brain fog and why do so many AS sufferers get it???)

Very, very real event for most of us.
Three varieties at least i'd say

Pain induced, hard to concentrate or do anything when hurting

By-product of inflammation processes - during flares we tend to get "scatty" and/or just turn off the brain - witness women and menstruation inflammation (as described, not from experience).

Peptides from dead Klebsiella et al cause mild inflammation at the brain barrier - various references.

Not impressed with the level of knowledge and advice you are getting - hope you vote with your feet - AS affects the whole body and not just 20 yo male lower backs...
Make sure you get and keep a copy of all the bloods for reference.
Going with the diet is a sound decision - no point in waiting to find stuff that turns up on X-rays after ten years of agony...

Ted

I've got Crohn’s disease...
...and he's got mine...
Spike Milligan

Welcome to our world, Doctors are really not open to suggestions. And most of them know very little about AS.
You need to find a Rhuemy that will listen to what you have learned from this site. I too go through similar Rhuemy visits, but at least he has said that I do have AS.

As for the Jaw problem, do a search on TMJ on this forum, it is also a common problem.

Take Care
Wayne

Wayne,

Not seen you post much lately how are you? When you due back in Syd Town?

David

I think the reason rheumys opinions differ so much, is because they dont know the specifics of AS.
As you may or not know, my rheumy is 'watching' me for changes. He doesnt want to say its AS just yet - even though at my 1st consultation he said it was.

Buckling of the legs has happened to me alot in the past (tho not recently). Sometimes it was associated with intense sharp pains in either knee.
As for pain not moving, I can say it certainly does.
If I flare, its generally in one area. When that flares over, the next will be somewhere else....upper back, ankle, feet, shoulder, wrists, ribs........anywhere.

Regarding spasms, I've been told they occur because when the area is inflamed, muscles and nerves and tendons become irritated, and cease up.

I'm not clued up on what xrays and scans may show now. I hear so much conflicting advice. Mine have shown AS, then at other consultations they havent. My MRI was inconclusive, which I'm told means things still arent clear...who knows?................


Good luck with seeking answers!



Amber

Hi Pip,

I have to agree; you need another opinion. It is absolutely ridiculous for anyone to say that AS damage cannot be detected on xray. I can personally attest to the fact that damage as seen on an xray is one of the main criteria for AS diagnosis at this point. Also, he talks about white spots on the xrays showing as inflammation. Are you sure he wasn't talking about a bone scan or MRI? Inflammation, as far as I know anyway, doesn't show on xrays, while damage doesn't necessarily show on a bone scan or MRI.

Muscle spasms are a part of AS, from everything I've learned over the last few years (including my own case).

AS pain does move around. It's rather like that snack, Bits & Bites; another day, a whole new handful. It might be in the left thorasic one day and in the right SI the next. Or, depending on the severity of the flare, it might rest in one place for a while. It all depends on the day and the flare.

Chronic pain = brain fog. Chronic pain = bad sleep = brain fog. Pharmaceuticals = brain fog. AS = chronic pain = brain fog. AS = chronic pain = bad sleep = brain fog. Pretty simple equation, if you ask me. The brain fog will vary from day to day; some of us get it badly others don't. Depends on the person and the day.

NSD is up in the air. Dr. Enbringer claims to have many independent study results showing it works. Other rheumies claim it doesn't. It's pretty controversial in the arthritis community, actually. My rheumy says that there isn't sufficient data confirming that the NSD or London AS Diet work; however, he also says that if I feel better going low starch, then why stop. Fact is that, like so much else with AS, it depends on the person. John (Dragonslayer) swears by it. Cheryl prefers low starch to no starch, saying that that works and is healthier overall. Others say they've had no positive result from the NSD. If hubby feels better on a low or no starch diet, then the rheumatologist's opinion in this regard is pretty much moot.

Yes, there can be jaw involvement. Not fun at all. You might want to see if you can get a night guard for him. Especially if you know he grinds his teeth. So helpful.

Checking him for iritis is wise.

I can't say for sure that he does or doesn't have AS. All I can say is, it sounds like it to me. But I'm not a doctor (like they know everythingy anyway). I would, however, strongly suggest that you get another opinion. This doc. sounds like AS knowledge is not high on his list of things he's acquired. In my humble opinion, anyway.

I'm glad Lee got some sleep. That is soooooo important.

Hugs,

Kat

Let me make a few points.
Any rheumatologist could do a little research in textbooks and of medical documents available on the internet and find basic information about the diagnosis of the disease which would refute almost EVERYTHING that rheumatologist said.

You do not have to be positive for the HLA-B27 gene in a blood test to have AS, because at least 10% (and I suspect much higher) of the people with it test negative for that gene. There is more than one gene involved, and there are many false negatives. So don't put your faith in any blood test.

AS is a sero-negative(meaning blood negative) spondylarthropy arthritis, meaning that the patient CAN have inflammation with it without having the normal signs of inflamation in a blood test. In other words, a negative blood test for inflamation does not rule out the disease.

X-rays. X-rays do not show inflamation. But X-rays DO show damage to the bones of the spine. IF, and only IF, the person is familiar with what to look for, this damage can be seen pretty easily. What totally blew me away with the last, quack rheumatologist my insurance sent me to, was he looked at my C-spine (neck) X-rays and blew them off....that's when I knew he had a major problem because no one blows them off...they may blow me off because I'm a blonde female claiming to have a spondylarthropy, but everyone else who has ever seen the neck goes "uh oh" to themselves when they get the film. I remember seeing my first X-rays in my early thirties (was diagnosed in my twenties) with the osteopath doctor and even I am thinking "uh oh that does not look right" before he started talking about it.
People are going to show damage and eventually fuse in different places at different rates.

Spasms are not connected with AS? Oh, bull manure. Of course they are. That is just false.

Chronic pain affects memory and concentration. Pain causes brain fog. The medications such as NSAIDS, muscle relaxants, and pain narcotics all cause brain fog.

NSD and LSD and gluten free diet. Of course they don't believe in diet. They're only doctors. One would think that with the number of spondy arthritics with bowel and digestion "issues" such as irritable bowel, colitis, crohn's disease, gluten intolerance, etc, someone would be able to make a connection, but no. Don't worry about it. Unless you are a diabetic and they tell you to each sugar, I would then turn them in for malpractice....they do "get" that relationship. If you change your diet, and it helps, just do it and ignore them. People who do have the HLA-B27 gene tend to be descendants of peoples who live closer to the north poles than the equator. It's probably some sort of adaptation that allowed your ancestors to survive smallpox or plague or something, but then you traded your ability to digest lots of starch and gluten in wheat. Remember, doctors think of rheumatoid arthritis most of the time when thinking that diet has no effect,and that is almost a totally different disease.

Having him checked for eye inflamation/iritis. Good. Sooner or later he had to do something right. If Lee has dry eyes and dry mouth and sensitivity to bright light glare, those are all signs of eye involvement that most spondy's have. Don't mess around with eye pain and redness, it IS an emergency requiring immediate treatment with steroid drops.

Can the kidneys get involved? Yes, either all by themselves because they can't take the stress of both the disease and too much starch, or they can get really stressed by the disease AND the drugs used to treat it. If you don't take a proper calcium supplement and your bones start leaching out too much calcium and your kidneys then try to process all this crap out of your blood, you can start kicking out calcium crystals or even stones, which are very painful. This is another reason I find it infuriating to say diet has no effect...of course diet has effect because your bones remodel constantly from the nutrients you consume. When your bones remodel wrong...you fuse.

Can you get it in your jaw? Yes.

Can your legs buckle out from underneath you sometimes? Yes. Please do not panic. This sort of thing tends to come and go in cycles and it will go away. And then it will come back. I always feel sort of surprised when this happens...it's like, oh, it's baaaaaack. Use a cane, hold the handrail on the steps, wait it out. Don't be afraid to exercise as much as you can stand, the stronger you are, the better you can make everything work.

You may have a doctor who only diagnoses AS only if already major fusion has taken place, but that takes years. That is the question you should ask him if you see that one again. Remember, now you are lucky enough to have over 2,000 people to know who actually have experienced it and any possible symptom you could come up with.

hi david
WOW! i am always so amazed at the response to post on this site. u r all so supportive. hehe.... the only prob with lotsa responses is the lotsa replies that go with them and cos there has been so much info posted in response to my q i dont know what to say or to whom first. hehe..... i've had to digest all the info and sort it out in my head before i could attempt to tackle any replies. but i think i've got there now. so here goes:
with regard to the nsd, lee has just completed day 4 and an even better day than yesterday. pain slightly more improved and is more relaxed. hope he has a good night too. methinks i will take all of ur advice with regard to diet and go with whatever works for lee. the drs can say what they like, but again although it is still v early days, i am beginning to believe lee is living proof that the diet helps.
as to the legs buckling, it seems lee's rheumy got it wrong. from the other posts on here too, it seems this is a common problem. thanks for that david. u do mention referred problems and so did the rheumy but it was not in relation to the legs buckling, he was quite adament that this did not happen with AS. the referred pain he talked about was in relation to lee feeling pain in different areas at different times (shifting from neck to shoulders, back, legs, feet, chest etc)
so it seems he was wrong about the legs buckling, the pain shifting from one spot to another and the spasms cos from what i have read there are a lot of AS sufferers who get spasms.
i understand about the difficulty of HLA B27 and understand that it a positive reading does not necessarily mean a definite dx. it seems this gene does show positive more in the hereditory cases. which brings me to another q. i have been wracking my brain to work out who in the family has AS and have come up with a big zero. there is OP and RA in the family but no AS. until the rheumy visit yesterday i understood it was passed down, but apparently this is not necessarily the case. will have to check that one out more i think.
the rheumy said lee's bloods were slightly up which he said showed inflamation somewhere. obviously lee is one of the exceptions eh? or he is not part of the SpA family at all. so it seems the bloods levels r not helpful with dx with regard to inflamation. interesting point david.
sorry, must be having a blonde moment. dont quite understand what u r saying about xrays and damage showing. r u saying that the idea is to get a dx prior to the damage showing up on an xray? or that it is the best way to dx AS?
as for the rheumy being a perfectionist? HA! methinks he is nonchallant. he dismissed most qs, fobbed off others and changed the subject when he couldnt answer. and four months is a long time! a definite referral methinks.
i'm obviously having another blonde moment david. why the necessity for referral to neurologist david? is it cos ot the brain fog? the giving way of the legs? something else that hasnt clicked with me yet? lol
another long one! sorry.
hope u r having a comfortable day:)
thanks again for ur support
pip