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#463322 - 02/22/12 04:48 AM Update
gilth Offline
Fourth_Degree_AS_Kicker

Registered: 06/19/11
Posts: 343
Small update

I have had a rough few weeks. I started Voltaren after I initially tried it for 20 days and felt improvement.

Again, some improvement, but not as much as I had hoped for. However, it did a terrible number on my stomach. I have had stomach issues all year and last year to be honest. Constipation and lately mixed in with diarrhea. I thought I had cought a stomach flu to begin with, but it's more to do with something else I think.

But the Voltaren....I had acid burn in my throat and esophagus. Stomach cramps, general stomach pain...all in all quite uncomfortable. Had to stop it again.

And after stopping Voltaren the first time I flared terribly. It hit me in the right shoulder, lower spine, flanks. For some days I would almost crawl on all fours, as my legs gave out. And after it I have had problems with something in my lower spine. If I even attempt to arch my spine forwards, I get a shooting pain in my lower spine that travels down the backside of my left leg, all the way down. After too much standing or sitting it gets worse and I get numb in my left buttock.

But I guess the one that worries me the most; It's felt like I have a ...disturbance in my heart rythm for a few weeks. Like it just goes in a wrong rythm or something. Cant really pinpoint it more than that. Not really with pain...but sitting in the bathtub a week and a half ago, I had a spasm or cramp or something in my chest on the left side. It wasnt so much painful as very very uncomfortable. It just felt like a fast contraction I think. I have felt weak and worn out too. I'm used to push heart worries away on the anxiety ticket, but this one has got to me I'm afraid. I don't like it.

And I've postponed and postponed going to the GP, as I have felt so resenful against him after his reaction the last time I saw him, after I saw a rheumy for the first time. Last night I couldnt take it anymore and I called my boss and explained to him I need to take a few days off, as I was tired, hurt, burned out and felt close to breaking down. He was very understanding, and had no problem with it. I have loads and loads of worked up hours to use, so no worries there lol! -I went to the docs today and told his secretarys I needed to see him. Got an appointment Friday, asked if they could get me in sooner, and ofc they could "if it's an emergency". I told them I wanted in (he has actually said before I can do that). and got an appointment later today.

If nothing else he can listen to my heart and tell me that it's ok. I dont mind if my anxiety pulls a trick on me if thats all it is, but I'd rather know for sure than worry anymore. I love my heart a little too much to take the risk.

I'll admit the thought of UC or Crohns has hit me. I had this stuff with my stomach before, just never as bad. For the last thing to flare along woth the other points was my stomach! -I've never thought about that as a flare before but it sure felt as it.

The body is a wonderful tool to make one confused, worried, puzzled and entertained!

Love
gilth
_________________________
Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer

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#463324 - 02/22/12 04:53 AM Re: Update [Re: gilth]
inkyfingers Offline
Gold_AS_Kicker

Registered: 04/08/09
Posts: 1593
Loc: Melbourne, Australia
AS sure sucks bigtime!

No real advice for you Gilth - just a few of these to get you over the rough patch:

hugss hugss hugss hugss heart - keep ticking.....and humpty because I like him!
_________________________
Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3

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#463327 - 02/22/12 05:44 AM Re: Update [Re: gilth]
aussiegirl Offline
Steel_AS_Kicker

Registered: 02/27/10
Posts: 1127
Loc: QLD Australia
I and moany others here have heart issues.
I could very well be anxiety but it could be something more serious.

I fully understand what you are saying in regards to your heart symptoms. I have had the same. I ended up being out on a heart monitor called for 24hrs. It was one that they plug you all up to a little recording box and you can go home for the 24hrs.

That along with other tests showed that my heart has these little spits and farts as I like to call them and also will have pulpitations or drop to a very low pace 30 beats/min.
I have been told it is due to scaring in the heart and a problem with the ellectronics miss firing. ALL caused from AS.

Eventualy I may need a pacemaker but for now it is just being monitored.

I hope your issues are not caused by this but you can never be too careful when it comes to the heart.

All the very best
_________________________

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#463335 - 02/22/12 10:13 AM Re: Update [Re: gilth]
gilth Offline
Fourth_Degree_AS_Kicker

Registered: 06/19/11
Posts: 343
Just came back from the GP. He had a listen at my heart and couldnt hear anything wrong, wich is a huge relief. He did ask when during the day I got it, but answered pretty much all day. He suggested I come in tomorrow for an EKG. I'll do that I think, if nothing else to relax my worrying.

When it comes to the back, he actually thinks it may be due to a "small prolapse" and requisitioned an MRI of the lower spine. I'm shocked, he actually thinks something is wrong with me! haha!

I bugged him about an infection I've had in my nose for over a year too, and he had a look and gave me antibiotics. I've had 2 anti-biotic cures the last year, one for a ratbite and one for an infected operation wound, neither touched the nose infection, but apparently neither were suited for that kind of infection. Can somone explain to me how anti-biotics can work that differently?

Was actually not a bad visit, even though he continues to think whats causing my back and joint pains is not rheumatological, and refers to the rheumy saying it isnt. Despite the fact that the rheumy was very clear she could not rule out AS, and in her letter to him wrote it "appeared to be a rheumatological reaction to an infection".



Lately, I've started slowly to write on what I hope will become a book one day on my terribly exciting journey through the medical world of psychiatrics first and then ending up here.

Doctors....when my book one day is finished, I'll make a point out of giving lectures on it, and in them I will chastice doctors and what they think they know about rheumatology and psychology. Both are enourmous black holes in most GP's knowledge and understanding. It's like they train to be dumb, and choose the easiest option out if there is any that can fit.

I havent given up on changing the way doctors think about first-line defence for our health!
_________________________
Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer

Top
#463343 - 02/22/12 12:58 PM Re: Update [Re: gilth]
cemc Offline
Captain_AS_Kicker

Registered: 01/25/10
Posts: 1997
Loc: UK
Glad you got in to see the doctor, and at least he has ordered the MRI. If the EKG is normal, and you are feeling OK at the time its done, ask if you can have one of the 24 hour heart monitors.

The nose stuff - it wouldn't be ulcers would it? Just asking because I tend to get more nose ulcers than mouth ulcers, but its the same kind of thing - mouth ulcers definitely go alongside autoimmune conditions, but you can get them in any mucous membrane area.

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#463353 - 02/22/12 02:42 PM Re: Update [Re: cemc]
gilth Offline
Fourth_Degree_AS_Kicker

Registered: 06/19/11
Posts: 343
Could you elaborate on what an ulcer in mouth or nose actually is /looks and feels like?

I havent got a grip on that expression.
_________________________
Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer

Top
#463358 - 02/22/12 04:24 PM Re: Update [Re: gilth]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20657
Loc: Upstate NY
if the heart continues to cause you concern, they have monitors that you can wear that record data and then they can analyze that. you wear it. my husband had that. the first one wasn't catching it. so then they tried another, that one, when he felt something, hit the button, and it kept what it had recorded just prior to his pushing the button and then for a short time after. it did catch something. but the cardiologist said it was PROBABLY nothing. of course "probably" really isn't good enough when it comes to the heart. but that's where he ended up.

he did notice that caffeine or too much chocolate made things worse.

also, when his reflux was very bad so that he had a lot of scar tissue in his esophogus and thus a lot of pain from that, it also was worse.

i've noticed when in severe pain, my heart doesn't beat faster, but it beats stronger.

i think pain can cause "heart type symptoms".

glad you got it checked out by the GP. if it continues to be a problem, push to see a cardiologist. hopefully they'll give you a monitor to take home with you so that you can record the events when they occur.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#463359 - 02/22/12 04:29 PM Re: Update [Re: gilth]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20657
Loc: Upstate NY
antibiotics and bacteria.

there are a few different classes of antibiotics. some target the ribosome and protein synthesis. some target cell wall formation. etc.

some antibiotics that can get into some bacteria can't get into other bacteria because their cell surface is different. for example, a lot of antibiotics don't affect tb because of its "coat of armor" surface structure.

some antibiotics don't work because the protein or other target that is targeted exists in some bacteria but not others.

then there is also the case of antibiotic resistance. some bacterial populations are largely resistant to some antibiotics.

so yeh, some antibiotics work on some bacteria, some work on others.

there are broad spectrum antibiotics which are good when they don't know the specific infectious agent. there are also narrow spectrum antibiotics that are better for when one knows exactly which bacteria is the infectious agent. these are better because they tend to not affect our good bacteria as much. whereas the broad spectrum also kill our intestinal flora and thus why we need to eat yogurt and / or take probiotics to replenish our good gut bacteria.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#463367 - 02/22/12 05:52 PM Re: Update [Re: gilth]
Possi Offline
Addicted_to_AS_Kickin

Registered: 11/13/02
Posts: 6760
Loc: Oklahoma where the wind comes...
I am glad you saw your doctor. About a year and a half ago, I was so fatigued that I could barely walk through the house. Also, I was having indigestion something terrible. I had my regular checkup with my cardiologist and I asked him for an angiogram. He said if I would ask for one then he was certainly going to do it. He had not much more than put the dye in until he said, "My goodness! You are not going home and I am going to get a surgeon." The next thing I knew I was being prepped for surgery. I had 3 bypasses.

I did very well with the surgery and Cardiac Rehab. I have not taken any more medicine for reflux/indigestion. I do have damage at the bottom of my heart. They don't know if I had a silent heart attack or if it was the severe blockages that caused it.

I hope all of you will stay on top of your cardiac check-ups.

Blessings.
Possi
_________________________


Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."


Top
#463369 - 02/22/12 06:05 PM Re: Update [Re: Sue22]
gilth Offline
Fourth_Degree_AS_Kicker

Registered: 06/19/11
Posts: 343
Originally Posted By: Sue22


glad you got it checked out by the GP. if it continues to be a problem, push to see a cardiologist. hopefully they'll give you a monitor to take home with you so that you can record the events when they occur.



Yeah, he mentioned that. He said I should do the EKG, and if it came up nothing, but the problem persisted, I could get a monitor to wear from the hospital, it wasnt the 24hour kind, but rather one that you wear for several days, that autodetects any abnormalities. Latest type, state of the art, apparently.

I wish he would have caught on when I told him I have stomach problems though.

You know how I told you guys how I believe when I was 20 this is what I had, and not the "psycosomatic anxiety" diagnosis they came up with? -Feels like one of the final pieces of the puzzle falling into place now. Back then....for 18 whole months, I had the worst and craziest bodily symptoms. Jaw with ear clicking, chest pains, balance issues (interpeted as panic anxiety, and probably was that too, who wouldnt when that goes haywire and noone has an explanation?), nerve rash up my entire arm, neuropathy symptoms, badly hurting back (I got thrice a weekly aroma terapy treatment for 8 months, and she literally said my back and neck was the sorest and most thightly wound she had ever worked on), and it just hit me; I had crazy constipation and stomach problems too. I had that written down to the xeroxat pills I was put on at the time. I had actually forgot, but they put me on anti-constipation meds too.

And here's a little quiz for you: When I was admitted to the psychiatric treatment facility, I was very suprised and so were they to find I weighed 49kg's. (I'm 183cm tall, and although I was always a slim kid I wasnt THAT slim) I didnt look like it, and there was frankly no reason for it, I had no eating disorder of any kind. I reasoned it to be a result of so many months with wild anxiety running my days, I had just forgot to eat. I was so run down at the time, I could have have taken any explanation that made sence. And when someone tells you that "yes, we realise you are the weirdest anxiety case we ever saw, it doesnt fit with anything else we know, but you have a form of anxiety that only manifests in your body, not through usual patterns...it sounds like it makes sence, and its FINALLY an explanation.

Wanna hazard a guess at what other thing I'm now thinking may have been the reason for the stomach issues? -You wont get a Nobel prize for the right answer smile
_________________________
Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer

Top
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