RE: dengenerative arthritis

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dollparts85 -> RE: dengenerative arthritis (2/13/2014 3:22:23 PM)
Have you ever considered going to overeaters anonymous? Might help with your food issues...

Dvr22999874 -> RE: dengenerative arthritis (2/13/2014 3:40:08 PM)
My son, aged 23, has just been diagnosed with something called 'Ankolysing Spondylitis', which has caused him a lot of pain in the last 3 or 4 years and led to him being diagnosed originally with arthritis. It turns out to be somewhat different and incurable. The doctor has sent him for another battery of tests and if these show that the ailment is past a certain point as regards pain etc, he gets the pain-killer injection (Adulimumab) free and has to have it every two weeks. I believe it is a lifetime deal. If he hasn't reached that point, he can still have the injection every two weeks but it is very expensive. I was reading some of the posts on here and thought that maybe, just maybe, some of those of you diagnosed with arthritis and similar, may have this. If so, get thee back to your G.P. and ask to be referred to a Rheumatologist post-haste. I know very little about this ailment apart from what I have said here and the fact that it is hereditary. I wish you all good luck anyway and you all have my sympathy, not that that will help with the pain but believe me, I feel for you.

LadyConstanze -> RE: dengenerative arthritis (2/13/2014 3:45:30 PM)
Sure, not a problem, when it was done they thought there was a fair chance that it's better to have some thyroid action than none, it's still very debated... Some docs think it's the way to go, others go for the whole removal... The problem with various specialists really seems to be they all have tunnel vision, if it's not in their data base, most aren't too keen to to look for interference. I never had arthritis, yet they tried to tell me that the pain was like it, I should have it, then they tried to tell me it's an abnormal early menopause, despite the hormonal reading all saying "could have children, sex hormones are fine". As for the cortisone shots, a hell lot of other problems might arise, especially with the thyroid (I know it's not for you, but that is why I get over my ick ick leeches feeling) Honestly, I wish I would know less about thyroid issues, but I learned the hard way that if I don't do the ground work and challenge the docs with scientific results (for example no broccoli, no soy products, etc.) most of them aren't aware of it. Also some thyroid conditions act like a sponge for vit D, the first thing the endo told me when I came back from LA and told him that the docs suggested I stay on 4000 units a day, that it was far too high, I need to come off it, I replied "Sure, if we do a blood test and that blood test says so, I run it past the doc who treated me and we decide then..." turned out that the 4000 units were actually too low and had to be increased to 5000. It's one of the little peculiars of a hypo thyroid condition that vitamin D and zink are the oil but the pipe seems to have a leak, what might be a dangerous dose for somebody without a thyroid condition is often barely enough for somebody with that condition. The problem with a partial removal is that the partial thyroid you have left can work erratic, sometimes it works, sometimes it doesn't so you need to have tests at least every 3 months instead of the yearly tests, any other medical condition can influence it, and as you already noticed, it simply blocks some pain killers. messes with periods, gives you all sorts of symptoms most docs treat because it doesn't look like it's the thyroid, weakens your immune system, can cause gum problems, odd unrelated joint problems, skin problems... Just too much effing fun... Oddly enough it was a dentist who told me first about the thyroid blocking receptors for pain killers, he said asked me if I ever had thyroid problems because he noticed that several other patients with thyroid conditions seemed to be immune to the injections. Effectively I changed most of my life-style (only a rare glass of wine as alcohol also messes up thyroid production, even in small doses), cut out a bunch of food as it also increases all sorts of allergies. I really really effing hate it. I can live with it, but I am really jumping through hoops... Though what I found helps is eating all sorts of sea wheat, sort of those cripsy algae things you can find at Trader Joe's or Farmer's Market and really spicy food, though that might be individual.

Rawni -> RE: dengenerative arthritis (2/13/2014 3:45:56 PM)
quote: ORIGINAL: dollparts85 Have you ever considered going to overeaters anonymous? Might help with your food issues... You didn't.... but you did! Unbelievable.

LadyConstanze -> RE: dengenerative arthritis (2/13/2014 3:54:49 PM)
quote: ORIGINAL: freedomdwarf1 Yep. My bad. I missed the bit about her thyroid problem. But even so, the barrage of tests they do for this shit would have shown up as a thyroid problem if that was the case. Obviously not otherwise she would have said as much. Just sayin'. Barrage of tests means nothing, there are so many tests and when something goes wrong with the thyroid it's a bit like having a short circuit in a really big system, usually it's not that easy as having too much or too little insulin, the "normal parameters" are extremely wide as they are very different for each individual, most docs just go with "within normal parameters" - what is normal for one person can be far too low or high for an individual, plus it can literally change within 2 days. We're basically talking about miniscule amounts that have maximum impact on your system and with atypical symptoms.

dollparts85 -> RE: dengenerative arthritis (2/13/2014 4:05:17 PM)
quote: ORIGINAL: LadyConstanze Sure, not a problem, when it was done they thought there was a fair chance that it's better to have some thyroid action than none, it's still very debated... Some docs think it's the way to go, others go for the whole removal... The problem with various specialists really seems to be they all have tunnel vision, if it's not in their data base, most aren't too keen to to look for interference. I never had arthritis, yet they tried to tell me that the pain was like it, I should have it, then they tried to tell me it's an abnormal early menopause, despite the hormonal reading all saying "could have children, sex hormones are fine". As for the cortisone shots, a hell lot of other problems might arise, especially with the thyroid (I know it's not for you, but that is why I get over my ick ick leeches feeling) Honestly, I wish I would know less about thyroid issues, but I learned the hard way that if I don't do the ground work and challenge the docs with scientific results (for example no broccoli, no soy products, etc.) most of them aren't aware of it. Also some thyroid conditions act like a sponge for vit D, the first thing the endo told me when I came back from LA and told him that the docs suggested I stay on 4000 units a day, that it was far too high, I need to come off it, I replied "Sure, if we do a blood test and that blood test says so, I run it past the doc who treated me and we decide then..." turned out that the 4000 units were actually too low and had to be increased to 5000. It's one of the little peculiars of a hypo thyroid condition that vitamin D and zink are the oil but the pipe seems to have a leak, what might be a dangerous dose for somebody without a thyroid condition is often barely enough for somebody with that condition. The problem with a partial removal is that the partial thyroid you have left can work erratic, sometimes it works, sometimes it doesn't so you need to have tests at least every 3 months instead of the yearly tests, any other medical condition can influence it, and as you already noticed, it simply blocks some pain killers. messes with periods, gives you all sorts of symptoms most docs treat because it doesn't look like it's the thyroid, weakens your immune system, can cause gum problems, odd unrelated joint problems, skin problems... Just too much effing fun... Oddly enough it was a dentist who told me first about the thyroid blocking receptors for pain killers, he said asked me if I ever had thyroid problems because he noticed that several other patients with thyroid conditions seemed to be immune to the injections. Effectively I changed most of my life-style (only a rare glass of wine as alcohol also messes up thyroid production, even in small doses), cut out a bunch of food as it also increases all sorts of allergies. I really really effing hate it. I can live with it, but I am really jumping through hoops... Though what I found helps is eating all sorts of sea wheat, sort of those cripsy algae things you can find at Trader Joe's or Farmer's Market and really spicy food, though that might be individual. I'm taking 6000 IU and my vit d is still too low. sighs wish they would just give me the prescription strength to take for 6-8 weeks. I eat dried seaweed everyday now. I'm hoping it helps my thyroid a bit. It's only 30 calories a packet and my local store sells them super cheap. Plus it's tasty. nom nom nom

dollparts85 -> RE: dengenerative arthritis (2/13/2014 4:06:35 PM)
quote: ORIGINAL: Rawni quote: ORIGINAL: dollparts85 Have you ever considered going to overeaters anonymous? Might help with your food issues... You didn't.... but you did! Unbelievable. What? She obviously has issues by her post. A lot of people find the group really helpful and it's free.

LafayetteLady -> RE: dengenerative arthritis (2/13/2014 4:24:14 PM)
What food issues exactly are you referring to? Because quite frankly that seems quite a bit like you are projecting your problems here. I'm talking about having multiple health conditions that each have their own set of food "rules., is it an issue that I don't want nor intend to eat boiled chicken and rice for the rest of my life? Yes. But that is not something that OA is for. Which brings me back to the fact that since you lack the cometency to adequately deal with your own health issues, your comments regarding mine continue to be far fetched and showing a serious lack of knowledge.

House91 -> RE: dengenerative arthritis (2/13/2014 4:24:54 PM)
quote: ORIGINAL: Dvr22999874 My son, aged 23, has just been diagnosed with something called 'Ankolysing Spondylitis', which has caused him a lot of pain in the last 3 or 4 years and led to him being diagnosed originally with arthritis. It turns out to be somewhat different and incurable. The doctor has sent him for another battery of tests and if these show that the ailment is past a certain point as regards pain etc, he gets the pain-killer injection (Adulimumab) free and has to have it every two weeks. I believe it is a lifetime deal. If he hasn't reached that point, he can still have the injection every two weeks but it is very expensive. I was reading some of the posts on here and thought that maybe, just maybe, some of those of you diagnosed with arthritis and similar, may have this. If so, get thee back to your G.P. and ask to be referred to a Rheumatologist post-haste. I know very little about this ailment apart from what I have said here and the fact that it is hereditary. I wish you all good luck anyway and you all have my sympathy, not that that will help with the pain but believe me, I feel for you. I was recently diagnosed with AS. It's not fun because it's an eventual fusion of the discs in your back due to an overactive immune system. This means that the nerves running out of your spine can get pinched at random moments depending on what is flaring. It's generally affects male more than females as it has an apparent sex linked expression. From what I've found it is on the X chromosome and is mitigated by the other X in females, however because males are XY we do not get this mitigating factor and thus it generally effects us worse. This leads me to believe that if a female were to have the gene on both X's it'd be much worse for her. I haven't found any journals on this though, human testing is frowned upon unfortunately :P. The IV, commonly known as Remicade, is an immunosuppressant that starts out on a 2 week cycle, to 4 week, to eventual 8 weeks with supplementary injections if necessary. It's very important to eat healthy and keep yourself healthy because your immune system is now compromised. I personally haven't had any major medical issues besides small flare ups from the lyme disease I had previously and a recurring throat problem. That's one thing to look out for. If you have a disease that is "permanent", like lyme, then it will flare up under the optimal treatments for AS.

kalikshama -> RE: dengenerative arthritis (2/13/2014 4:29:45 PM)
Not wanting to spend the extra money for gluten-free bread is not an issue the Over Eaters Anonymous can help with.

dollparts85 -> RE: dengenerative arthritis (2/13/2014 4:34:57 PM)
quote: ORIGINAL: LafayetteLady What food issues exactly are you referring to? Because quite frankly that seems quite a bit like you are projecting your problems here. I'm talking about having multiple health conditions that each have their own set of food "rules., is it an issue that I don't want nor intend to eat boiled chicken and rice for the rest of my life? Yes. But that is not something that OA is for. Which brings me back to the fact that since you lack the cometency to adequately deal with your own health issues, your comments regarding mine continue to be far fetched and showing a serious lack of knowledge. Thinking it's okay to reward yourself with a cookie and juice when you have diabetes is definitely something OA can help with.

LafayetteLady -> RE: dengenerative arthritis (2/13/2014 4:36:24 PM)
Thank you for sharing your sons story. My sincere wishes for him finding as much comfort and as little pain as possible. If I remember correctly, you are in the UK. I'm sure you know our healthcare system is quite diffferent here in the US, LOL. Anyway, during my reading I did read some things on your sons's condtion. They symptomatically are quite similar. As I said though, my diagnosis was made from an x-ray, so we are relatively sure. I'm also sure because of the events that led me to this and theproblems and diagnosis from the start. Everything I have read indicates that the injury I suffered would progress to this. The only part my GP has played in this was giving me the referral (which I requested) to the orthopedist. While freedomdwarfs post wasn't good news, by any stretch, it was helpful in regards to the physical therapy. I'm very proactive with my doctors and like I said, after the physical therapy, when I follow up with him, there will be a lot of questions, including discussing the benefits of an arthritis specialist if the PT doesn't help. However, the first treatment steps with artritis are typically anti-inflammatories and exercise, which PT is, just more isolated to particular areas. Now if we could just stop getting slammed with snow, I could get the appointments for the PT started, lol.

WinsomeDefiance -> RE: dengenerative arthritis (2/13/2014 4:37:43 PM)
quote: ORIGINAL: dollparts85 quote: ORIGINAL: LafayetteLady What food issues exactly are you referring to? Because quite frankly that seems quite a bit like you are projecting your problems here. I'm talking about having multiple health conditions that each have their own set of food "rules., is it an issue that I don't want nor intend to eat boiled chicken and rice for the rest of my life? Yes. But that is not something that OA is for. Which brings me back to the fact that since you lack the cometency to adequately deal with your own health issues, your comments regarding mine continue to be far fetched and showing a serious lack of knowledge. Thinking it's okay to reward yourself with a cookie and juice when you have diabetes is definitely something OA can help with. Only if she's eating the whole bag of cookies and drinking the entire gallon of juice. Rewarding yourself with things that you can only have in moderation, is not overeating.

dollparts85 -> RE: dengenerative arthritis (2/13/2014 4:39:25 PM)
quote: ORIGINAL: WinsomeDefiance quote: ORIGINAL: dollparts85 quote: ORIGINAL: LafayetteLady What food issues exactly are you referring to? Because quite frankly that seems quite a bit like you are projecting your problems here. I'm talking about having multiple health conditions that each have their own set of food "rules., is it an issue that I don't want nor intend to eat boiled chicken and rice for the rest of my life? Yes. But that is not something that OA is for. Which brings me back to the fact that since you lack the cometency to adequately deal with your own health issues, your comments regarding mine continue to be far fetched and showing a serious lack of knowledge. Thinking it's okay to reward yourself with a cookie and juice when you have diabetes is definitely something OA can help with. Only if she's eating the whole bag of cookies and drinking the entire gallon of juice. Rewarding yourself with things that you can only have in moderation, is not overeating. She shouldn't be eating them AT ALL with diabetes...I don't even do that and I don't have diabetes. But then again that's probably why I don't have diabetes even though my insulin levels are high. If I didn't follow a strict diet, I would have diabetes.

ShaharThorne -> RE: dengenerative arthritis (2/13/2014 4:44:29 PM)
Took my TSH/T4 blood work yesterday after a week free of meds. My new doctor is trying to pinpoint the hypothyroidism (I know I got it, its just at times I don't remember to take my meds). Meanwhile he is saying that my glucose is a little high after a fasting blood work. Okay....so I might be at the start of prediabetes. Do the damn test to see if I do have it first, not rely on a stupid blood test. I do eat chocolate moderately, especially dark chocolate. Worry about if I am having a reaction to aspartame and splenda. Mom has to see the pain management doctor Monday...my old one. I fear she is going to get the shots again since they did not work in '09 (before I came home). She had a MRI done on her back yesterday after I had my blood work done (I swear the hospital has a subscription to ESPN magazines, luckily I had my Kindle with me). She is to have a CT with dye to pinpoint a nerve in her face...her right side is numb and the neurologist wants to figure it out what is going on.

WinsomeDefiance -> RE: dengenerative arthritis (2/13/2014 4:46:47 PM)
quote: ORIGINAL: dollparts85 She shouldn't be eating them AT ALL with diabetes...I don't even do that and I don't have diabetes. But then again that's probably why I don't have diabetes even though my insulin levels are high. If I didn't follow a strict diet, I would have diabetes. I'm diabetic (my diabetes is very well managed) and my nutritionist says pretty much the exact opposite but meh. ... (edited to remove the snark.)

angelikaJ -> RE: dengenerative arthritis (2/13/2014 4:47:21 PM)
quote: ORIGINAL: dollparts85 quote: ORIGINAL: LafayetteLady What food issues exactly are you referring to? Because quite frankly that seems quite a bit like you are projecting your problems here. I'm talking about having multiple health conditions that each have their own set of food "rules., is it an issue that I don't want nor intend to eat boiled chicken and rice for the rest of my life? Yes. But that is not something that OA is for. Which brings me back to the fact that since you lack the cometency to adequately deal with your own health issues, your comments regarding mine continue to be far fetched and showing a serious lack of knowledge. Thinking it's okay to reward yourself with a cookie and juice when you have diabetes is definitely something OA can help with. I am diabetic. When I go to the lab in the mornings and it is a fasting sugar, they give me a to go bag with a pack of granola bars and some water. So a cookie or juice is not out of the norm. And if you are willing to count all your carbs like crazy, having a cookie is not a big problem. Please do not diagnose other people. You are not qualified to do so. Please do not identify the perceived issues you personally believe people to have. It is exceedingly rude and presumptuous.

LafayetteLady -> RE: dengenerative arthritis (2/13/2014 4:59:03 PM)
I did discuss partial versus total removal with endo. He indicated that would be something the surgeon decides when he had me on the table. Variables mostly regarding the nodule and how the biopsy turned out. However, it seems here, total removal is more likely. Probably because of the erracticness (is that even a word?). I've been fighting the doctors regarding how thyroid screws up menstrual cycle. It sent me into early menopause, staring around 32. Now its been 2-3 years since my last period. I stopped counting once I hit the one year mark. That's actually one of the main reasons I'm trying to get this all fixed now. The hot flashes and night sweats are more annoying than all my other health problems combined. With a very limited income and no washer/dryer, I can't afford to change my clothes 5-6 times a day. Since I don't go out much (or maybe this is why I don't), I tend to just live with it, but I also have a very sensitive sense of smell and often think my clothes smell like stuff left in the washer too long after the cycle finished and the clothes sat wet. Gross, huh? The leeches aren't just an "ick" factor for me. It is knowing the uncontolled panic and anxiety they would cause. I have to receive a fairly large tranquuilizer before any procedures are done, and that's not including the sedative they give for the procedure. I've dealt with the anxiety for 20 years now, mostly without medicattion, and have become excessively self aware so they can stay managed. Hospital staff cringe when they see me because they don't like me giveng them protocol, even if my protocols aren't bizarre. They just involve directed IV sites, my friend (or safet person) being allowed to stay with me as long as possible and them giving more information than they are used to. My biggest concern with the thyroid removal is the time it takes to find the right medication dosage. My understanding is that it takes around a year, and as you know, wonky thyroid levels make you miserable. That's why I've decided not to remove at this time. I'm sure the endo won't like my decision much, but its my throat that would be sliced, so tough cookies on him. Of course, this is all contingent on the biopsy being beninign. I let you know next. Week. I respect your opinion in general, and since you've gone through this, even more so. Ill be quite grateful to have you as a sound board.

dollparts85 -> RE: dengenerative arthritis (2/13/2014 5:19:31 PM)
You should make sure your endo is willing to prescribe a thyroid medication other than levothyroxine. You should do fine post op as long as you aren't forced to try levothyroxine.

LafayetteLady -> RE: dengenerative arthritis (2/13/2014 5:35:25 PM)
Do you know ANYTHING about having blood drawn? Or even about diabetes? Are you one of those people who thinks diabetics can't have anything with sugar? The level of your lack of knowledge and assumption is astounding. Juice and a cookie after having a lot of blood drawn isn't a reward. I eat fruit everyday. Its part of aa balanced diet. So while I'm sure OA could be helpful to you, it not something that I require.

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