NeuroTalk Support Groups - Finally asking for some help

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Please let us know how you are doing. I am very worried about you. One of the things on the list of causes of swollen legs is heart failure or kidney failure, and either those can become the cause of shortness of breath.

You're too quiet tonight....

I am so sorry, it looks like I've frightened some people. I've since spoken with Liza Jane. She knows I'm o.k. I did not think about it but several of you thought I had a doctor's appt. this morning. It wasn't a doctor's appt. I have the doctor's appt tomorrow.

Today was slightly better. I'm still swelling. But I had planned with my husband for about three weeks to attend his Kiwanis Officer Installation Banquet tonight. I'd even bought some special clothes for it. Then the swelling got so bad and I felt so crappy. I felt like it was planning down the drain and we were both disappointed.

Then yesterday I felt better and this morning it was about the same, so I spent the day on the couch in front of the tv with my little dog. Keeping my feet and legs up. I took the first nap I've had in a couple of years. And tonight I had dinner out for the first time in two years. Wasn't easy. It was one of those metal folding chairs and the only way my behind survived is because they had so many standing ovations. But I didn't disappoint my husband or myself. I went. I saw old aquaintances that I haven't seen in two years. I got hugs I needed so badly.

The meal was too salty, I'll pay for it tomorrow. But I see the doctor tomorrow. We'll let him figure out what is going on. I'm now loaded with bunches of questions.

I called the Endo yesterday for test results. I've heard nothing. I'll call her back tomorrow. This is ridiculous. The only thing I can think is that maybe all the tests weren't in or weren't in my file and the office help is trying to catch up from the holiday.

This is way too long, but I know some of you are worrying. I'm such a lucky person to have you all.:grouphug:

Billye

Strange things happen

Well this morning I got up and my feet were not swollen. Neither were my hands. You go figure. And of course I had to see the doctor about all my swelling.

My husband and I had a long discussion with him. He is thorough. He did a physical hands-on examination, liver isn't enlarged, spleen, heart, lungs all normal. He told me to have blood drawn to check the markers for inflammatory processes and at the same time is checking bloodwork for diabetes. He believes the swelling is simple edema and will probably go away as the weather gets cooler.

He still maintains that he is doing all the right things for my bones and inflammatory disease. But he admits it isn't working. He said he will not oppose Forteo for my bones if the Endocrinologist recommends it. And she has already said she will probably put me on it. He is a doctor who believes in conservative treatment, if at all possible, because my body is being subjected to so much in the way of toxic substances.

The bone scan was negative for a stress fracture but he says it doesn't necessarily mean I don't have one, just that he doesn't think I do. But he cannot account for all the pain. I quite personally believe it is the inflammatory disease. After all, I'm sero-negative for everything.

Oh and for Liza Jane,...he does believe I have Rheumatoid Arthritis because of the xray markers I have. Hands are symetrical in damage, so were knees.

I'm extremely tired, but still don't have the full picture of what is going on here. I will post as I have info.

Billye

Quote:

Originally Posted by Silverlady (Post 145981)

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.

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:hug:

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.

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

Yuk. I hate sticking myself too. My husband does it for me-his eyes kind of light up when it is B12 injection time... :) It took a while, but I can stick my little dog now every day, I just can't stick myself... :)

Have you thought about seeing if you could get a referral to the Mineral Metabolism Dept. at the med school? My friend is going there, although she has not been put on Forteo as of yet. I don't know if they are going to put her on it or not... My ObGyn wants me to go also.

Cathie

Cathie,
I've been there done that about 8 years ago. I was seen by the head of the dept in a research program. I had all the tests run and was told I didn't need to take Fosamax!!! :eek: My regular GP about rolled over. At the time I was borderline osteoporotic. I really don't care to go there again unless I can see that they have made strides in what they did then.

Billye

Chomp down all that Calcium stuffs!

My combo is 2 calcium sugar free chocolate chews[Kirkland/costco] w/ 500mg calcium carbonate and 200IU of Vit D plus one Calcium {citrate[160mg], D-[100IU]; and magnesium [90mg]}. Not to mention my pre-natal multi vite...which has little bits more. Had to add that last calcium tab to get the magnesium punch in...
BUT I had gone big time very quickly over thate line to osteoporosis due to the estrogen blockers now I take for the cancer f/u therapies [really it's chemo! DUH?]. As long as I keep chomping down all those supplements I guess things will be OK...won't know till my next Dexa scan early next year. Blood work seems to be looking as if there's lots of goodies to be TAKEN up by my body...Whether it is, the dexa will truly tell me so. The waiting is a killer tho...

I really don't think I could stick myself w/shots tho...I tolerate the IV lines going in by holding my breath and closing my eyes...never was a really good trooper about the needle thing EVER..tho I have tried! [I KNOW catheters aren't really needles, BUT......]

Would I be correct in assuming that the Forteo and the B-12 injections are IM rather than IV? IM I have done on animals and that's a LOT easier...as long as you know the zones to do it in/to...

If it comes to injecting myself? I dunno about having the husband do it...would need to take a LOT of considering on that issue...just hope I don't have to...

Billye - HUGS and I truly hope things are going in some direction that's positive....FINALLY? Please take special care - j

Well, I don't know what was going on then. They are testing the heck out of my friend though, who now is Osteoporotic and will probably get worse, since she has Addison's Disease and has to be on Cortisone for the rest of her life.

The doc she sees is the one who gave me the info about his colleague using adhesive to glue fractures back together...

I cannot say for sure, but I believe they have made great progress, not just at the school, but everywhere, in the treatment of Osteoporosis... However, we all have to go with whomever we are comfortable with and if you feel confident in your Endo, go for it!!! :) :) :)

I went through a study program there in the very early '90's. Much has changed since then though. There was not nearly as much available then to treat this with, just as they did not glue fractures back together then... :) :)

Cathie

Dahlek... and an update

About your post to me and the calcium you take. If I am reading the post right, ....you are taking 1,160 mg. of calcium. Are you sure that is enough? Both the arthopedic doctor and the gp say I need 1,600 mg. of calcium and the added D plus mag.

Got the new bloodwork. and it sums up by saying that the anemia due to chronic disease is getting worse and my sed rate has almost doubled. The rheumie is kicking up my dose of methotrexate to 8 tablets a week. (20 mg. a week from 15 mg. a week)

You know when I went to Mayo in Dec., we considered my disease to be stable. When I got home, the doctor decreased my immunosuppressants because I was stable and he thought we could try doing so. Looks like it was a mistake. I have steadily gotten worse since about the 3rd month of that. So back up we go. My thinking is now.."If it ain't broke, don't fix it!"

I've been in PT for 4 1/2 weeks and as of Friday last week I have been so crippled that it hurts (in the buttock area) to walk. The Physical Therapist thinks my SI joint is all flared up. So, all the painful gains I've made in muscle strengths in the last month will probably go downhill since I am now limited in movement again. And I only have one more week of PT allowed by insurance.

I've been giving the info Mrs. D gave me about the Indomethacin and silent bleeds real thought. I've decided I'm going to quit taking it and the Nexium to see if it brings my RBC, Hemoglobin and Hematocrit back up. Any thoughts on this?

Billye