Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Two Amazing Statements this week

I though last week was toppers for stupid statements and there were a few but todays has me amazed:


Last Weeks No1 Joint effort here!

1. Junior Dr to Dave in flare....."You can't have arthritis because arhtritis is defined as inflamamtion of the synovium and your's are n't inflamed, I am a rheumatologist" .......... ok eat that one and spat it out..............

2. Senior Dr to Dave, you should take Cllebrex, COX2 drugs were developed with bowel safety in mind and are totally safe for all patients, including IBD.........

This Weeks, it will take some beating!

This is from my father in law, currently lying in hospital with a foot of intestine missing, cancerous polyp removed on Friday......has yet to eat anything........I was discussing the lifestyle question that his family was going to pose to him........"Well Dave, I;m not that bad I've only had 2 drinks since the op".........I was speechless.......I wondered why he was complaining of integestion.....stupid me

David

and still speechless

David,


More Stupid,stupid statements!!!

1) Prednisone is for fibromyalgia, not AS. ( From an intern at Shands teaching hospital)

2) You're told old for AS (same person) I started symptoms at 38 yrs old.
You're Hbla27neg.(same person and other rhuemys)

3) The reason for your pain is that one of your legs is longer than the other....I wish!!!!!! (same person and another time, a physical therapist told me that)

4)you're in too much pain for AS.....what????? (a rhuemy)


This is not a joke. People have actually told me all of these things.
Maureen

Hi,

if the difference (the best way is xray) in length is < 1cm it's not an issue but statistically =>12mm and there is a greater incidence of back pain (statistically), but working out why it is shorter, scolisos hips different bone lengths foot deformity etc.......most physios should be able to do that?

2. Average age diagnosis 40.9 years I think B27 -ves (ASIF).

David-

Thanks for sharing your statements, I got a kick out of them-

Here are a couple more:

When I was first diagnosed- my rheumy said "just take the pills (NSAIDS) and you will be riding your bike in no time"

MY PCP sated "Shari I don't know anything about your disease, so I am sorry I can't help you"

My Neuro stated "you have hyperreflexes but I really don't know why that is occurring" you will have to ask your rheumy

My rheumy stated "I think your pain is from depression and not AS" - I didn't know that rheumys are psychologists -

Thank God I have all of you for support- Shari

Some more to share

1.First meeting with rheumy----"You don't look like you need to be here!"

2. Can't you just learn to live with the pain?? Hello!! What do you think I am doing?

3. Demorral is for dying cancer patients only.

4. And my personal favorite:: You know there is no cure for this so why do you keep trying different medications? ---Said by a rheumy!!

Julie

Kodi

Hi David

Amazing isn't it that the pros can make such strange statements.

Lets see when I was see the rhumy when I was telling him about the pain in my hips one time he said " Well be thankful you are not a man they have much worse pain"

Then when I finally got hip xrays out of him he said "You certainly don't need replacements besides you are too you and you just have a bit of arthritis starting in the hip. If you still have pain in 6 months come back and I will give you something" Well 6 months later I was see and ortho surgeon who couldn't believe the arthritis in my hips and wanted to replace them asap.

Another time I wanted him to check my shoulder because of the pain he said " Well it isn't arthritis because you don't get arthritis in the shoulders"

No wonder I stopped seeing him. I get better advice here.
Thanks everyone

Take care
Valerie

Doctors are some of our most ignorant and dangerous enemies:

Question: What do you think about those AS diets that are so prominent on the Internet? Specifically, the London diet?

Walter Maksymowych, MD, responds: "AS diets are sheer nonsense. It represents junk science. In clinical trials, 30% of people will respond to a placebo, even in one-year trials. Therefore, it doesn't surprise me that some people swear by diets."

At this rate, we will never get enough accurate advocacy in the medical community to result in more effective treatments, targeted for AS instead of hand-me-downs from RA, cancer, and other of the more prominent diseases.


"On two occasions, I have been asked [by members of Parliament], 'Pray, Mr. Babbage, if you put into the machine wrong figures, will the right answers come out?"
Charles Babbage

Shari,

My rheummy diagnoses and fixes my neuro stuff.........out of 4 only one had any idea, he was good actually but did n;t get the underlying cause and can't blame him for that.

I saw one at the same hopsital I was in last week, 15 months ago and in the appointment I had clonus and muscluar twitching that is so obvious and he missed everything but a hand tremor. My GP was livid.......

You need Dr.s that can diagnose and help Shari, it's those little painful things that can be fixed which keep you going!

David

Good morning everyone! I have heard alot too. The one leg is shorter to take pills and you will get better. Blahblahblah! I hope everyone had a good weekend. Mine was pretty good..went to Ellijay(NGa. mountains)to see parents. Rain is killing my neck.Dave I don't know that much about your father in laws situation, but I hope he is ok. I also hope you have a better day. I want to personally thank everyone for their support. I have learned alot. I have finally figured out how to respond to your post without Michelle, the administrator recieving it...hahaha! She will probobly be glad.MAUREEN, THANK YOU FOR LETTING ME KNOW i AM NOT THE ONLY ONE FEELING DEPRESSED INSIDE. I now know we all feel that way at times. As far as stairs go, the next place I rent or hopefully one day buy, will be a ranch!!!I have a hard time also with stairs. I can;t stay on too much longer because it is thundering.I am ready for snow!!!!!I know I keep jumping back and forth. I guess I am just still so happy that I found you guys. Oh, Charles, Flowery Branch is in georgia near Gainesville. It is about 30 minutes from Atlanta.I also need to quit smoking. Thank you for the advice everyone.Talk later...Have a good day lisa

Hi John,

I realise this is a bit of a knee jerk reaction on my part, but really...such blanket statements cannot be helpful.
>"Doctors are some of our most ignorant and dangerous enemies."

Ignorance is simply a lack of knowledge. Rheumies (and the whole medical profession) do not make claims to have all or any answers for AS.

And what is dangerous? If dangerous means to endorse a diet to a patient, while at the same time being ignorant of it's validity, then yes, it would be ignorant and dangerous for them to suggest an approach for which they do not have any *known* reason to believe will help, and when it may (for lesser educated individuals than yourself) cause a potentially harmful lack of balanced nutrition.

Most respectable doctors will tell us however, that NSAIDS can be very harmful, have not proven to slow down disease progression, and can only serve to ease the pain as a stop gap. It's an honest assessment based on studied facts. True, it is not particularly helpful.

My doctors are certainly not my enemies. Quite the opposite. I would say my Rheumatologist has been the single most important figure in my life, and has helped me along every step of this path. He has been honest in conveying what they know and don't know. He has given me reason to hope and by his efforts alone I managed to keep WALKING. He is neither dangerous, nor ignorant of the science pertaining to the diet, nor of my suffering, but only seeks to find ways to help, all the while admitting his inability to do so effectively. He is one of the good guys on this earth. I've stuck around this life due in a large part, to his consistent care and genuine compassion.

I recognise whole-heartedly that you, John, are also one of the good guys. I realise you only make such statements in an honest selfless effort to help others, and that you do so with notable success. None the less, arguing against the entire profession that has saved my sight and sanity is distasteful. Arguing for a diet approach that has saved yours is something I appreciate and applaud you for.

Respectfully,

mig