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TO Carmen

Posted by Laurie R on 11/14/01 at 09:53 (064775)

Dear Carmen , Just thinking about you ..How are you doing ? Did you get a chance to check out the web sites I left you ?? Hace you seen your doctor to talk about RSD? Let me know how you are doing when you have time .

Tomarrow I go for my second spinal injection . I also got the time changed . I was going at 4:30 , now it will be at 1:30 .Better now I won't have all day to think about it ......

My best to you ,Laurie R

Re: Laurie

Carmen H on 11/14/01 at 14:25 (064786)

Hi Laurie!! Nice of you to think of me....I just got back from the neurologist and he is leaning heavily toward a diagnosis of MS. I go to the Rheum. again tomorrow for another exam since all these new symptoms appeared. I also called three of my dr,'s yesterday and asked about RSD and they said that is not my problem. I have an MRI of the spine and neck coming up and also IV treatments to start treating for MS (he's almost positive that's what it is) and since it won't hurt me he said it's up to me to get the IV treatments and get started on feeling better.....that I have been suffering way too long.
SO that's where I am right now....A spinal Tap is in my future as well if this is MS....so I understand about the injections you are goign through. I have also had a caudal epidural already. NOT fun! I feel for you and will keep you in my thoughts and prayers as you seek relief and a better way of life.
Keep me posted on your treatments and how you are feeling.
(email removed)
Thank you again for thinking of me.

Re: Carmen

Tammie on 11/14/01 at 15:04 (064791)

Hello, I have just read your post about a possible MS dx. I am so sorry that you have gone thru so very much,my heart goes out to u! I hope and wish the best for u always! You will be in my thoughts and prayers tonight as always! Good luck and I know u have allot of spunk u will get thru this ! Hugs to u

Re: Laurie

wendyn on 11/14/01 at 20:04 (064802)

Carmen, at one point I had doctor's tossing around the idea that I may have MS - so I have an inkling of how it feels to be where you're at right now.

Hang in, and please keep us posted.

How is the ultimate determination made as to whether or not it's MS? From what I understand, they dropped the theory in my case because my health was otherwise very good, no fatigue etc. and I have enough structural problems that they eventually felt they found the root cause. So I don't know a lot about treatment or diagnosis etc.

Re: TO Carmen

john h on 11/15/01 at 09:27 (064816)

Laurie: having had 2 epidurals, a discogram, and 12 injections into the facet joints i know what you are experiencing. The discogram was the worst of the lot but honestly none of them were no where as bad as i had imagined. Are you having an epidural? If so to do what? Good luck and my thoughts are with you.

Re: Laurie

john h on 11/15/01 at 09:32 (064817)

Carmen: What is in the IV and what does it do? I had a spinal tap prior to my back surgery some 25 years ago along with a mylogram. They of course give you a shot to deaden the area prior to the tap. I was laying on my side and it was no big deal. I am certainly thinking about you and my prayers are with you.

Re: John and Wendy

Carmen H on 11/15/01 at 11:04 (064823)

The IV has a steroid mix of some type that will go directly into the veins instead of ingesting it orally and it's a different type of steroid than for inflammation.
The reason they are thinking it is MS is because the tests I have had come back are all negative for the things they would rule out first (diabetes, RSD, Viral Infections, Back problems etc) and also one of the nerve conduction studies came back slightly abnormal in the Tibial Nerve. This test was done before too many of these symptoms started to manifest...this last week I have had a BLOW out of symptoms and pain. So now it's all here at the surface for them to see and feel and they want to progess into the more serious of possibilities.
I will be happy to get a diagnosis of ANYthing at this point. My legs were so weak on Monday walking up the stairs nearly took everything I had.
So....at least we are catching this early on. The MRI and the spinal tap are the two definitive tests that will show this is MS for sure.
Either way....at least I'll know it's not one more thing.
I appreciate all of your kind thoughts. It makes it so much easier to have support. Thank you so much!

Re: John and Wendy

Laurie R on 11/15/01 at 11:20 (064825)

Dear Carmen , I did get your email . I will write you later . I don't have time now . I have to get my house in order before I go to the hospital . I did want to say ,you have the most wonderful attitude out of anyone . You are so positive . I am so sorry that you are in so much pain . I think you are right , it is better to know what is wrong then you can get early treatment and feel better.

I think in one of your post you said you had a doctor's appointment today for this . Can you let us know how it goes?

You are in our prayers ,I do think of you offen . Your also right about making it easier to have support . I don't know what I would of done with out the kind and wonderful people from this board . They have always been my main support ... I have learned so much since I came here.

I thank all the wonderful people from this board. You all are in my thoughts and prayers ......

Much love to you Carmen and to all , Laurie R

Re: John and Wendy

JudyS on 11/15/01 at 11:41 (064826)

Carmen - I continue to send positive vibes your way.......thinking of you often. Will you go on to second/third opinions if you do get a positive MS diagnosis?

Re: John and Wendy

Carmen H on 11/15/01 at 11:57 (064828)

Thank you Laurie and Judy....yes I will get another opinion. I work with an Ortho, Rheum and neur. right now and they get records from each other for my visits and review them and discuss things with me so we are all on the same page for the most part.
I will take all the good vibes you can send! You guys are great!

Re: Carmen

john h on 11/15/01 at 17:59 (064839)

carmen: i would guess you have read about all there is to read about MS. Some things I read today. (1) there is no one test for diagnosing MS and that includes a spinal tap (2) 45% of all persons diagnosed with MS will live a normaly life (3) MS patients have a normal life exptancey. (4) twice as many women as men are diagnosed with MS. (5) Only 15% of MS patients will suffer more severe symptoms. Hang in there Carmen and start looking for the silver lining.

Re: my best to you, Carmen

Suzanne D on 11/15/01 at 19:27 (064846)

Thinking of you a lot today, Carmen, and wishing you the strength you need to get through this! A clear picture of what is wrong should help, and it should be hopeful to read all the statistics John H posted! Surely with your good attitude, you will be one who can get along well even if the diagnosis is MS. You are in my prayers and thoughts! :-)

Re: my best to you, Carmen

Anthony P on 11/15/01 at 20:18 (064852)

Good Luck To You Carmen,and we will all be thinking of you.
My prayers go out to you
Anthony

Re: You guys!!

Carmen H on 11/16/01 at 08:05 (064862)

Okay that's the first time this board has actually brought good tears to my eyes....thank you for all of your kind words and I will take those prayers and hold them TIGHT!!! After yesterday,,,UF Dah! as we norwegians say....it was rough.
The home nurse came to administer the IV treatments and she took some time to get things ready....there 's a lot to do with that stuff! When she actually put the needle in she had to maneuver it a bit (it's going to be in my arm for 5 days) and wanted to make sure it wouldn't clot or anything like that...lo and behold Carmen started passing out cold.
I told her I was going to pass out....and I leaned my head back on the couch and she said 'It's okay honey..just rest and relax you're safe and I'll keep an eye on you while you're out.
So I told her 'here I go...I'm a goner. (keeping my humor still while passing out ;-)) and the next thing I know I am coming out of some strange sensations and 'dreams' and she is patting my hand and trying to hold the needle in and saying 'Hello? Carmen wake up...wake up!!!!!'
I said 'I'm here.....what's wrong? I'm coming out of it...feeling better.'
She said 'Honey you scared me! I thought you were resting your eyes...and the next thing I know you started kicking your legs straight out and shaking...and then your arms started to shoot up and shake!!!! I thought you were having a seizure!!!!!!'
So I scared the nurse. How easy is that to do? Only Carmen.....
What a rough day...that was AFTER going to the Rheum. and getting blood drawn with the biggest needle out there for a muscle test for Polymyasitis (another dreadful disease) and almost passing out. Normally I am very strong! I haven't even flinched at the caudal epidural! This has been a rough two days...thanks for letting me vent and for giving me such kind words to start another rough day.
love to all of you.

Re: Your gonna beat this thing !!

BrianG on 11/16/01 at 23:41 (064896)

Hi Carmen,

It sounds like the worst of the testing is now over, I hope. Boy, am I glad I didn't think about MS during my 1st 5 years with PF, or I would have made my HMO give me the same tests also, hahahaa. I was in heavy denial, how could all this pain be coming from PF??? Anyways, I hope your symptoms stay as they are, or maybe get better. We're all survivors here, and I wish you the best.

BCG

Re: Laurie

Carmen H on 11/14/01 at 14:25 (064786)

Hi Laurie!! Nice of you to think of me....I just got back from the neurologist and he is leaning heavily toward a diagnosis of MS. I go to the Rheum. again tomorrow for another exam since all these new symptoms appeared. I also called three of my dr,'s yesterday and asked about RSD and they said that is not my problem. I have an MRI of the spine and neck coming up and also IV treatments to start treating for MS (he's almost positive that's what it is) and since it won't hurt me he said it's up to me to get the IV treatments and get started on feeling better.....that I have been suffering way too long.
SO that's where I am right now....A spinal Tap is in my future as well if this is MS....so I understand about the injections you are goign through. I have also had a caudal epidural already. NOT fun! I feel for you and will keep you in my thoughts and prayers as you seek relief and a better way of life.
Keep me posted on your treatments and how you are feeling.
(email removed)
Thank you again for thinking of me.

Re: Carmen

Tammie on 11/14/01 at 15:04 (064791)

Hello, I have just read your post about a possible MS dx. I am so sorry that you have gone thru so very much,my heart goes out to u! I hope and wish the best for u always! You will be in my thoughts and prayers tonight as always! Good luck and I know u have allot of spunk u will get thru this ! Hugs to u

Re: Laurie

wendyn on 11/14/01 at 20:04 (064802)

Carmen, at one point I had doctor's tossing around the idea that I may have MS - so I have an inkling of how it feels to be where you're at right now.

Hang in, and please keep us posted.

How is the ultimate determination made as to whether or not it's MS? From what I understand, they dropped the theory in my case because my health was otherwise very good, no fatigue etc. and I have enough structural problems that they eventually felt they found the root cause. So I don't know a lot about treatment or diagnosis etc.

Re: TO Carmen

john h on 11/15/01 at 09:27 (064816)

Laurie: having had 2 epidurals, a discogram, and 12 injections into the facet joints i know what you are experiencing. The discogram was the worst of the lot but honestly none of them were no where as bad as i had imagined. Are you having an epidural? If so to do what? Good luck and my thoughts are with you.

Re: Laurie

john h on 11/15/01 at 09:32 (064817)

Carmen: What is in the IV and what does it do? I had a spinal tap prior to my back surgery some 25 years ago along with a mylogram. They of course give you a shot to deaden the area prior to the tap. I was laying on my side and it was no big deal. I am certainly thinking about you and my prayers are with you.

Re: John and Wendy

Carmen H on 11/15/01 at 11:04 (064823)

The IV has a steroid mix of some type that will go directly into the veins instead of ingesting it orally and it's a different type of steroid than for inflammation.
The reason they are thinking it is MS is because the tests I have had come back are all negative for the things they would rule out first (diabetes, RSD, Viral Infections, Back problems etc) and also one of the nerve conduction studies came back slightly abnormal in the Tibial Nerve. This test was done before too many of these symptoms started to manifest...this last week I have had a BLOW out of symptoms and pain. So now it's all here at the surface for them to see and feel and they want to progess into the more serious of possibilities.
I will be happy to get a diagnosis of ANYthing at this point. My legs were so weak on Monday walking up the stairs nearly took everything I had.
So....at least we are catching this early on. The MRI and the spinal tap are the two definitive tests that will show this is MS for sure.
Either way....at least I'll know it's not one more thing.
I appreciate all of your kind thoughts. It makes it so much easier to have support. Thank you so much!

Re: John and Wendy

Laurie R on 11/15/01 at 11:20 (064825)

Dear Carmen , I did get your email . I will write you later . I don't have time now . I have to get my house in order before I go to the hospital . I did want to say ,you have the most wonderful attitude out of anyone . You are so positive . I am so sorry that you are in so much pain . I think you are right , it is better to know what is wrong then you can get early treatment and feel better.

I think in one of your post you said you had a doctor's appointment today for this . Can you let us know how it goes?

You are in our prayers ,I do think of you offen . Your also right about making it easier to have support . I don't know what I would of done with out the kind and wonderful people from this board . They have always been my main support ... I have learned so much since I came here.

I thank all the wonderful people from this board. You all are in my thoughts and prayers ......

Much love to you Carmen and to all , Laurie R

Re: John and Wendy

JudyS on 11/15/01 at 11:41 (064826)

Carmen - I continue to send positive vibes your way.......thinking of you often. Will you go on to second/third opinions if you do get a positive MS diagnosis?

Re: John and Wendy

Carmen H on 11/15/01 at 11:57 (064828)

Thank you Laurie and Judy....yes I will get another opinion. I work with an Ortho, Rheum and neur. right now and they get records from each other for my visits and review them and discuss things with me so we are all on the same page for the most part.
I will take all the good vibes you can send! You guys are great!

Re: Carmen

john h on 11/15/01 at 17:59 (064839)

carmen: i would guess you have read about all there is to read about MS. Some things I read today. (1) there is no one test for diagnosing MS and that includes a spinal tap (2) 45% of all persons diagnosed with MS will live a normaly life (3) MS patients have a normal life exptancey. (4) twice as many women as men are diagnosed with MS. (5) Only 15% of MS patients will suffer more severe symptoms. Hang in there Carmen and start looking for the silver lining.

Re: my best to you, Carmen

Suzanne D on 11/15/01 at 19:27 (064846)

Thinking of you a lot today, Carmen, and wishing you the strength you need to get through this! A clear picture of what is wrong should help, and it should be hopeful to read all the statistics John H posted! Surely with your good attitude, you will be one who can get along well even if the diagnosis is MS. You are in my prayers and thoughts! :-)

Re: my best to you, Carmen

Anthony P on 11/15/01 at 20:18 (064852)

Good Luck To You Carmen,and we will all be thinking of you.
My prayers go out to you
Anthony

Re: You guys!!

Carmen H on 11/16/01 at 08:05 (064862)

Okay that's the first time this board has actually brought good tears to my eyes....thank you for all of your kind words and I will take those prayers and hold them TIGHT!!! After yesterday,,,UF Dah! as we norwegians say....it was rough.
The home nurse came to administer the IV treatments and she took some time to get things ready....there 's a lot to do with that stuff! When she actually put the needle in she had to maneuver it a bit (it's going to be in my arm for 5 days) and wanted to make sure it wouldn't clot or anything like that...lo and behold Carmen started passing out cold.
I told her I was going to pass out....and I leaned my head back on the couch and she said 'It's okay honey..just rest and relax you're safe and I'll keep an eye on you while you're out.
So I told her 'here I go...I'm a goner. (keeping my humor still while passing out ;-)) and the next thing I know I am coming out of some strange sensations and 'dreams' and she is patting my hand and trying to hold the needle in and saying 'Hello? Carmen wake up...wake up!!!!!'
I said 'I'm here.....what's wrong? I'm coming out of it...feeling better.'
She said 'Honey you scared me! I thought you were resting your eyes...and the next thing I know you started kicking your legs straight out and shaking...and then your arms started to shoot up and shake!!!! I thought you were having a seizure!!!!!!'
So I scared the nurse. How easy is that to do? Only Carmen.....
What a rough day...that was AFTER going to the Rheum. and getting blood drawn with the biggest needle out there for a muscle test for Polymyasitis (another dreadful disease) and almost passing out. Normally I am very strong! I haven't even flinched at the caudal epidural! This has been a rough two days...thanks for letting me vent and for giving me such kind words to start another rough day.
love to all of you.

Re: Your gonna beat this thing !!

BrianG on 11/16/01 at 23:41 (064896)

Hi Carmen,

It sounds like the worst of the testing is now over, I hope. Boy, am I glad I didn't think about MS during my 1st 5 years with PF, or I would have made my HMO give me the same tests also, hahahaa. I was in heavy denial, how could all this pain be coming from PF??? Anyways, I hope your symptoms stay as they are, or maybe get better. We're all survivors here, and I wish you the best.

BCG