[Silverlady]

For several months now, I've had some serious problems that are not being resolved. So I thought I'd post and see if anyone has any suggestions for what I might do. You may remember that I developed stress fractures, multiples including one in my left ankle, foot, thoracic spine and finally two in my sacrum. The culmination of the fractures was that I wound up in the hospital for two weeks.

The rheumatologist and otho told me I'd need 10-12 weeks to recover from the initial effect of the fractures and then they would put me in physical therapy. About two weeks before the physical therapy, my ankles started swelling. They were intermittant at first, some days more swollen than other days. Now for almost a week they remain swollen all the time. The left more so than the right. Now my ankles, feet, legs up thru the knees, hands, and today my eyes are swollen. I cannot exercise for very long in the physical therapy before I have this feeling of needing to urinate. And I am finding that I need to stay close to a bathroom because of this reason. I just feel toxic. Odd way to describe it, but it is the way I feel. I'm falling sleep sitting up sometimes too.

The rheumatologist looked at my general bloodwork and says it is just the hot summer. But hot summers haven't affected me this way before. I'm vibrating more than usual too. And I constantly have this feeling of the world sorta swimming around. Also I have periods of confusion. I am shaking violently after exercise. I can't hold on to a glass without using both hands and am afraid of missing my mouth when trying to put anything to it.

I am also losing the toenails on both big toes. The podiatrist said I had a trauma to them. I haven't dropped anything on my toes, run them into anything and wear sandals around the house. No trauma that I know of.

On my last blood work, the RF factor was out of range at 36,
the Microscopic Exam of urine had mucus threads present which was considered out of range,
my serum glucose was out of range at 115
And on the CBC the RBC was out of range at 3.45, Hemoglobin was out of range at 10.9, Hematocrit was out of range at 31.6, and the RDW was out of range at 15.7%

And if you are still with me at this point, I thank you so much. I know this is long, but I've waited a long time to post it and wanted to try not to leave out anything that might help someone who might be able to help me.

Anyone have any suggestions about what is going on? I seem to have a doctor who doesn't seem to have a clue. Thanks in advance for any answers.

Billye

[Curious]

sent you a pm billye. i hope it helps.

do you know what the rest of your blood test showed? sodium levels, potassium, calcium? liver enzymes?

i'm toxic and have edema right now too. working on it. today much better than during the week. staying out of the heat today must be helping.

[Silverlady]

Hi Curious,
I got your PM and answered you.

The postassium looks normal at 4.0 in a ratio of 3.5-5.5

The calcium looks a little on the low side at 9.0 on a ratio of 8.5-10.6

I'm not sure what the liver enzymes are called.

Billye

[Curious]

What are normal levels of AST and ALT?

The normal range of values for AST (SGOT) is from 5 to 40 units per liter of serum (the liquid part of the blood).
The normal range of values for ALT (SGPT) is from 7 to 56 units per liter of serum.
What do elevated AST and ALT mean?

AST (SGOT) and ALT (SGPT) are sensitive indicators of liver damage from different types of disease. But it must be emphasized that higher-than-normal levels of these liver enzymes should not be automatically equated with liver disease. They may mean liver problems or they may not. The interpretation of elevated AST and ALT levels depends upon the whole clinical picture and so it is best done by doctors experienced in evaluating liver disease.

http://www.medicinenet.com/liver_blood_tests/page2.htm


does this help? the link has a lot more infomation.

i had an abdominal injury years ago. then my liver messed up during an emergancy c-section with my son.

[Silverlady]

It looks like I'm still in range altho a little on the high side.

The AST (SGOT) is 37 in a range of 0-40
and the ALT (SGPT) is 30 in a range of 0-40

I expected high because of the Humira and methotrexate. I do know the doctor watches this number.

Billye

[glenntaj]

-as if you are at least somewhat anemic, especially with that red blood cell count. That alone may be a major contributing factor for fatigue. (I see you've been researching that in your other post.)

I also wonder how much this may have to do with drug effects and interaction.

Remember, too, that Sjogren's is still a vasculitic autoimmune disease, as well as one of the moisture/mucuous membranes, and you may be having effects in that realm. That could certainly account for the edema/swelling through vascular insufficiency. There are also associations with hypothyroidism and adrenal insufficiency--a whole other battery of tests to have.

I know you and Chemar have communicated, and that Mrs. D will likely respond here too--do you feel like listing more test results from your most recent batteries?

[ConsiderThis]

Originally Posted by Silverlady

For several months now, I've had some serious problems that are not being resolved. So I thought I'd post and see if anyone has any suggestions for what I might do. You may remember that I developed stress fractures, multiples including one in my left ankle, foot, thoracic spine and finally two in my sacrum. The culmination of the fractures was that I wound up in the hospital for two weeks.

The rheumatologist and otho told me I'd need 10-12 weeks to recover from the initial effect of the fractures and then they would put me in physical therapy. About two weeks before the physical therapy, my ankles started swelling. They were intermittant at first, some days more swollen than other days. Now for almost a week they remain swollen all the time. The left more so than the right. Now my ankles, feet, legs up thru the knees, hands, and today my eyes are swollen. I cannot exercise for very long in the physical therapy before I have this feeling of needing to urinate. And I am finding that I need to stay close to a bathroom because of this reason. I just feel toxic. Odd way to describe it, but it is the way I feel. I'm falling sleep sitting up sometimes too.

The rheumatologist looked at my general bloodwork and says it is just the hot summer. But hot summers haven't affected me this way before. I'm vibrating more than usual too. And I constantly have this feeling of the world sorta swimming around. Also I have periods of confusion. I am shaking violently after exercise. I can't hold on to a glass without using both hands and am afraid of missing my mouth when trying to put anything to it.

I am also losing the toenails on both big toes. The podiatrist said I had a trauma to them. I haven't dropped anything on my toes, run them into anything and wear sandals around the house. No trauma that I know of.

On my last blood work, the RF factor was out of range at 36,
the Microscopic Exam of urine had mucus threads present which was considered out of range,
my serum glucose was out of range at 115
And on the CBC the RBC was out of range at 3.45, Hemoglobin was out of range at 10.9, Hematocrit was out of range at 31.6, and the RDW was out of range at 15.7%

And if you are still with me at this point, I thank you so much. I know this is long, but I've waited a long time to post it and wanted to try not to leave out anything that might help someone who might be able to help me.

Anyone have any suggestions about what is going on? I seem to have a doctor who doesn't seem to have a clue. Thanks in advance for any answers.

Billye

Dear Billye,

I am soooo sorry to read this. I'm also sorry I've been so exhausted and not coming here so that I would have seen this sooner.

I'm sooo sorry to read that you are having these awful problems.

Have you tried Serrapeptase? I started taking it last year and have been impressed with the results. It reduces swelling, for one thing, and it helped with my back pain.

The other thing I do when there's good sunlight to heat my water, is soak my feet in Epsom salts, which also relieves swelling. When I lived in the hydrogen sulfide I had huge swelling, my ankles looked like elephant's legs... Epsom salts baths made a visible difference.

Which reminds me, if you have a house with two bathrooms, and you only use one, the water in the traps in the one you don't use can evaporate and that can allow sewer gas to come into your home. That's basically what the hydrogen sulfide was, that I experienced.

Almost everyone thinks that someone would be able to smell it, but what the air quality guy told me was that it deadens the olfactory nerve first, so in fact you don't smell it after a short exposure.

The other thing that I know has been helping me is the Whey amino acids which I have in my coffee every day.

(((((((((Billye))))))))

I have to go, I just came to get the link for that sugar and pain thread that Belinda started.

[Roxie2007]

HI Billye!
Gosh I'm SO sorry to read of all the problems you have been having! I can't imagine how miserable and frustated you are having to deal with such things! I sure hope your dr.s can figure out what's going on and then a treatment plan to help you!
Keeping you in my thoughts

[ConsiderThis]

Hi Billye,

I forgot to mention that when I was living in the hydrogen sulfide (from the privy pit I didn't know about) I couldn't eat any mustard or anything with vinegar in it.

If I did, the swelling would vastly increase.

Also, at that time I had dips in my fingernails... sort of like valleys that went from side to side.

So if you have those, you might be having some sort of toxin problem that is overwhelming your body.

I'm afraid I don't have any pictures of my fingernails when they were like that. My old camera wasn't very good.

I sure hope I get the equity from my condo, because I'd like to get the camera I saw that shows red better than the one I have now.

[Silverlady]

I received a phone call from the Endocrinologist today. Seems that everything looks o.k. except my Vit. D level. It's low. Strange because I'm supplementing with Calcium plus D (Equate brand). I'm to take 2 months of a prescription Vit. D then she will start me on Forteo for my bone situation. This will be hard to get past my GP/Rheumatologist because he isn't a fan of Forteo. Not sure why. I asked his nurse about this and she said the drug rep they have now does not keep them supplied with the Forteo. I have private insurance and this drug is on the formulary so it shouldn't be a problem for me. Like Liza Jane, it will be a two year initial treatment with an injection every day. I'm not looking forward to this. I don't do well with sticking myself. I've done it before with Imitrex for migraines and I've also done a few of the Humira. But I have long since given it up to my husband to do for me,..... he seems to relish the thought of sticking a needle into me.

Billye