[erinhermes]

Hello all! JUst got back from Dr. I's office. I have been experiencing really, really bad lower back pain on my left side, along with a feeling of electricity and numbing of my left foot, so I asked him about it. He thinks it may be a possible compound fracture of my back. Also, he wants to do another x ray of my back, another EMG on my legs, blood work and a cat scan of my sinuses - I've also had wicked headaches followed by nosebleeds......yuck!

I start another round of IV IG next week - during which time I am to lower my pred to 30 mgs a day - YAY!

For those of you that pray, please do so! I am a bit scared!

Big hugs!
Erin

[AnnieB3]

Geez, Erin, you are too young to have all this going on. I am so sorry you are having more trouble. It sounds like you have a good doctor though. I'm really surprised he didn't order an MRI of your back. It's much more detailed in what it can see. He may still order one, who knows.

I don't envy you the EMG.

When you start having things go wrong (like the nosebleed), always look to the drugs you are on. Especially Prednisone. Do they have you on good prostaglandins like fish oil or flax oil? Prednisone is an antiprostaglandin, in case you didn't know.

I hope you get some answers and help. It stinks having so much wrong.

Annie

[ras1256]

Girl? What am I goin to do with you, huh? I think your body is just ganging up on you to MAKE you slow down and rest! I just had to play mama for a minute, hope you don't mind!

I'm glad you have such a good doc that listens to you and really checks you out. Is this the cutie pie?

You really need to slow down and take it easy now. If they think you need some kind of spine surgery, Please check out the minimally invasive options. If that comes up, please get in touch with me and I'll give you some direction and links with information about that.

You take care honey. I promise there will be light at the end of the tunnel. You're too young and spunky for all this to keep you down for long!

Loves ya.

Originally Posted by erinhermes

Hello all! JUst got back from Dr. I's office. I have been experiencing really, really bad lower back pain on my left side, along with a feeling of electricity and numbing of my left foot, so I asked him about it. He thinks it may be a possible compound fracture of my back. Also, he wants to do another x ray of my back, another EMG on my legs, blood work and a cat scan of my sinuses - I've also had wicked headaches followed by nosebleeds......yuck!

I start another round of IV IG next week - during which time I am to lower my pred to 30 mgs a day - YAY!

For those of you that pray, please do so! I am a bit scared!

Big hugs!
Erin

[erinhermes]

It IS wild that all of this is going on, but I know that I am far better off than others and need to keep that in mind - when we were in Seguin this weekend, I saw a woman in th grocery store with some weird tube going from her throat to her stomach........I was feeling sorry for myself b/4, but that quickly snapped me out of it! Nothing like a dose of reality to keep thing in check!

I am not looking foward to my EMG, but have had it b/4 and @ least know what to expect! LOL! I will NOT wear shorts, though! THis whole "no sun" thing due to the pred has my legs so white that I could blind people, so he'll just have to make do with my gaucho pants - they can be pulled up far enough to do it without scaring people!

I am soooooo very happy that my pred will be reduced! THrilled! It is going to be so nice to somewhat look like myself again! I really hate it when people say "You used to be so pretty/thin"! I just want to smack them all! Who says that? I mean really?!

I'm also getting my blood work done, b/c when I had charlie horse pains b/4, my ferritin level was @ 10, so I take iron DAILY!

I will also get some fish oil. I get some of my scrips refilled 2morrow and will pick it up!

Big hugs!
Erin

[AnnieB3]

Erin, Please talk to your doctor before you take any over-the-counter supplement! You have iron deficiency and weird platelet stuff going on so you need to clear anything with your docs first, okay? Don't want you getting worse on top of everything else because I gave you some off-hand advice!!!!

Annie

[erinhermes]

Hey Becky! When it rains, it pour, huh? I do agree with you that this is my body saying "slow down" and I am going to! I told Dr. I (my favorite Dr.) that I am going to take a leave a absence and relax more around the house! He DID fuss @ me for a bit and told me in no uncertian terms that I need to slow down until I am BETTER - and I will get better - I just know it!

Dr. I really is amazing! I just love that man! He has already promised me that he will never allow me to get as I was again - and he meant it! I made him look me in the eyes and promise me - he did! And he hasn't let me down yet!
I used to resent all of the tests, but now know that he is doing it to keep me healthy - and yes(!) - he is the cutie pie!

I wish you lived here! You would love him! Not a warm and cuddly guy @ first, but I knew I liked him when he gave me that promise; he had tears in his eyes - he really, truly CARES about his patients!

AS for now, I am going to get lots of rest and pray like mad! My pastor did stop by yesterday to pray with me.....I really needed it!

There are so many things that MG has taught me; more empathy, patience, kindness, to TRULY take the time to smell the roses and best of all, I have met the most amazing people! I was so shy b/4 that talking to anyone would make me break out in a sweat, but life is just too short to worry about what others think of me - plus I do realize how blessed and lucky I am to have such amazing friends and dr's!

If I have to have surgery, I will definitely let you know! I need all the help I can get!

Big, big hugs!
Erin

Originally Posted by ras1256

Girl? What am I goin to do with you, huh? I think your body is just ganging up on you to MAKE you slow down and rest! I just had to play mama for a minute, hope you don't mind!

I'm glad you have such a good doc that listens to you and really checks you out. Is this the cutie pie?

You really need to slow down and take it easy now. If they think you need some kind of spine surgery, Please check out the minimally invasive options. If that comes up, please get in touch with me and I'll give you some direction and links with information about that.

You take care honey. I promise there will be light at the end of the tunnel. You're too young and spunky for all this to keep you down for long!

Loves ya.

[ras1256]

Hey! I finally got 1 whole big blood test result back - my vitamin D is low which I already knew. But I mention this because of a couple of things you said Erin. Muscle cramps and staying out of the sun. With all the Pred you've been on, too, have they checked your vitamin D level? A deficiency can cause muscle pain, weakness and cramping.

Annie, you're so up on all this stuff I wonder if you know if the level I'm at would be enough to cause severe symptoms. I tried looking it up, but again all I found was general stuff. I was at 26.2 when normal range is 32-100 according to my test.

Also, she had me at 800IU (I'm actually taking 1000 IU), and now saying 400 IU (I'm planning to still take the 1000 - D3+K). Unfortunately, I don't know what the previous level was. I'd been taking this 1000 IU's for just a couple of days when they pulled this last blood test, I think. Lastly, does the D take a few weeks to get to where you feel it like most supplements?

Wouldn't that be so cool to have part of this be vitamin/supplement cureable! Now the big question though is why am I deficient? I get sun almost every day, so I think something else is missing. I know the Pred can do it, but I was low on potassium and calcium before I started on the Pred. I understand the calcium can be reflecting a D deficiency as well. Oh well. We'll see where all this goes.

Anyway, Erin....if they haven't checked your D and B12, see if your doc will do that.

[Maxwell'sMom]

Erin,
I'll keep you in my prayers as well. Until you know more, take it easy.
Love Lizzie

[maryec]

Originally Posted by erinhermes

Hello all! JUst got back from Dr. I's office. I have been experiencing really, really bad lower back pain on my left side, along with a feeling of electricity and numbing of my left foot, so I asked him about it. He thinks it may be a possible compound fracture of my back. Also, he wants to do another x ray of my back, another EMG on my legs, blood work and a cat scan of my sinuses - I've also had wicked headaches followed by nosebleeds......yuck!

I start another round of IV IG next week - during which time I am to lower my pred to 30 mgs a day - YAY!

For those of you that pray, please do so! I am a bit scared!

Big hugs!
Erin

It's good to go down on the pred., but you will miss the energy that goes along with it.
I am so sorry to hear about your back.
As for the emg, I you do good !
Mary

[erinhermes]

Yes. I will miss the energy - no doubt about it, but Dr. I wants me on the lowest dose possible - yay!

80 was great! I had energy to spare and got all of my work done, but it did make me a bit manic - lol!

Hopefully the Imuran will do the trick b/c I am tired of sideburns....and 3 chins...... and wookie hair on my arms.....not sexy!

Talk to you soon!
Erin

Originally Posted by maryec

It's good to go down on the pred., but you will miss the energy that goes along with it.
I am so sorry to hear about your back.
As for the emg, I you do good !
Mary