Aa
HI and TY
Hey guys! I'm new to this group and new to MS or so they think. Not 100% sure as far as labs go....Will they ever run out of tests?
Doesn't seem Likely. I am very glad I found this blog. A lot of what I have read sounds like what I'm going through. This week I have had my LP. and Three days of IV-SM started the Pred. Didn't really know which way was up this week but just had to go with it.
My friends ask me how I'm doing and I'm sick of telling them, I don't know what to say. It *****! I didn't know if it was the drugs or the disease but reading these blogs has given me good info and a guide. Today I thought it might have been better before I started all these treatments and reading these blogs I feel reassured that things are "average."
I just hope I can contribute something to someone like me later on down the road.
Even the best doctors cannot prepare you for some of these things, I guess that's why they don't really try.
I think It would have really helped If someone had told me beforehand to drink coke's and caffeine before my LP. I thought I was doing a good thing and not eating/drinking the "bad stuff." LOL.
Doesn't seem Likely. I am very glad I found this blog. A lot of what I have read sounds like what I'm going through. This week I have had my LP. and Three days of IV-SM started the Pred. Didn't really know which way was up this week but just had to go with it.
My friends ask me how I'm doing and I'm sick of telling them, I don't know what to say. It *****! I didn't know if it was the drugs or the disease but reading these blogs has given me good info and a guide. Today I thought it might have been better before I started all these treatments and reading these blogs I feel reassured that things are "average."
I just hope I can contribute something to someone like me later on down the road.
Even the best doctors cannot prepare you for some of these things, I guess that's why they don't really try.
I think It would have really helped If someone had told me beforehand to drink coke's and caffeine before my LP. I thought I was doing a good thing and not eating/drinking the "bad stuff." LOL.
Cute doctors do help!. I thought my LP was horrible but I think I'm pretty lucky now, It could have been worse.
My doctor ordered sedation, and I saw it written on the orders when I got to the outpatient hospital.
I asked the initial nurse what kind of sedation they'll give me she said "Oh you'll do fine" and all they used was a local.
The first stick was no good and they used the same needle and reinserted it a second time, it was so dull I felt the 'pop' and my nerves went insane! Later they had had to re-adjust it.
3/4 of the way through the LP the nurse says "Wow, you are so brave, most adults we see need sedation!" Which made it even worse! I started hyperventilating And choking on tears
I'm not a a people doctor or but muscle relaxers and anti anxiety meds would have made a tremendous difference! I am a Veterinary nurse and we would never be able to do that to an animal.
I was so tense i have a huge knot in my back All my joints hurt from laying there so tense for so long.
I went to the chiropractor today and he popped my lower back which made a huge difference.We did accupuncture too. I may pay for it later but I feel great now.
My doctor ordered sedation, and I saw it written on the orders when I got to the outpatient hospital.
I asked the initial nurse what kind of sedation they'll give me she said "Oh you'll do fine" and all they used was a local.
The first stick was no good and they used the same needle and reinserted it a second time, it was so dull I felt the 'pop' and my nerves went insane! Later they had had to re-adjust it.
3/4 of the way through the LP the nurse says "Wow, you are so brave, most adults we see need sedation!" Which made it even worse! I started hyperventilating And choking on tears
I'm not a a people doctor or but muscle relaxers and anti anxiety meds would have made a tremendous difference! I am a Veterinary nurse and we would never be able to do that to an animal.
I was so tense i have a huge knot in my back All my joints hurt from laying there so tense for so long.
I went to the chiropractor today and he popped my lower back which made a huge difference.We did accupuncture too. I may pay for it later but I feel great now.
Wel for me MS had its blessings too, wel now that i think backt to the testing period when no one knew what was wrong with me, I know it sound strange because theres now good thing about being diognosed with MS, but when it came to my lp my hole lower back was so numb i did not feel a thing and didnt had any of the usual symptoms of the aftermath like the headaces. Or maby because my dr was so cute i didnt want to cause a scene lol.I felt like a alien being poked with needles and blood drawn every morning and evening but u know what, discovering this web page made me feel like im not alone and that helps alot if u feel sad or even happy tell us about it we will be happy or sad with you.
God Bless
.
God Bless
.
Good talking to all of you.
No I'm not the clown. That was when I first started having symptoms. At our county fair parade I walked five miles with paraesthesia in my feet and that's when I knew it wasn't a circulation problem.
Now that I'm coming down off the steriods I am feeling much better. I don't think any of my symptoms have gone away or changed. Originally I started out with paraesthesia in my fee,t chest, and hands. Before I started all these tests my feet and chest paraesthesia wore off/went into remission if you can call it that. It's only my hands now. The neurologist says my right eye is delayed or non responsive. I have always been "clumsy" but thought that was a personal attribute.
So far I know I have a couple of non enhancing white spots? in both hemispheres and had high protein in my CSF.
After I taper off the steriods my next appointment isn't for 6 weeks and I'm not on anything else, does that sound familiar?
On my own accord I'm taking Ginko biloba, St. Johns wort, and Vitamin D3 even thought they haven't said anything about my Vitamin D levels. Alot of friends and family have been telling me they're deficient in Vitamin D.
No I'm not the clown. That was when I first started having symptoms. At our county fair parade I walked five miles with paraesthesia in my feet and that's when I knew it wasn't a circulation problem.
Now that I'm coming down off the steriods I am feeling much better. I don't think any of my symptoms have gone away or changed. Originally I started out with paraesthesia in my fee,t chest, and hands. Before I started all these tests my feet and chest paraesthesia wore off/went into remission if you can call it that. It's only my hands now. The neurologist says my right eye is delayed or non responsive. I have always been "clumsy" but thought that was a personal attribute.
So far I know I have a couple of non enhancing white spots? in both hemispheres and had high protein in my CSF.
After I taper off the steriods my next appointment isn't for 6 weeks and I'm not on anything else, does that sound familiar?
On my own accord I'm taking Ginko biloba, St. Johns wort, and Vitamin D3 even thought they haven't said anything about my Vitamin D levels. Alot of friends and family have been telling me they're deficient in Vitamin D.
I hate spinal headaches from LP's. Worst headaches ever was till I had a blood patch.
Hi and welcome also.
Chad
Hi and welcome also.
Chad
Hi and welcome to our community! Sorry for the late welcome, usually someone responds to posts quicker but the weekends are slow and with the holidays upon us it has been slow some days.
JJ told you about the Health Pages next to the yellow icon which contain a wealth of information on a variety of subjects. Also, if you have trouble finding an answer to your specific question since we are not professionals, you can search the archives by typing your question in to the "Search this Community" in the green bar just above the Recent Activity and just below the icons containing the health information.
It seems you have already explored the site and blogs some yourself. You have probably found we have discussed just about everything related to MS and a few things OT (Off Topic) like favorite movies or ice cream.
Welcome and we hope you find fellowship, answers to your questions and perhaps some laughter tucked in here and there.
Ren
JJ told you about the Health Pages next to the yellow icon which contain a wealth of information on a variety of subjects. Also, if you have trouble finding an answer to your specific question since we are not professionals, you can search the archives by typing your question in to the "Search this Community" in the green bar just above the Recent Activity and just below the icons containing the health information.
It seems you have already explored the site and blogs some yourself. You have probably found we have discussed just about everything related to MS and a few things OT (Off Topic) like favorite movies or ice cream.
Welcome and we hope you find fellowship, answers to your questions and perhaps some laughter tucked in here and there.
Ren
Welcome to our support community! I look forward to getting to know you. This can be a long process until we have a firm 'absolute' case. There are so many MS mimics that ruling out takes forever and I dont' think they ever run out of tests.
Anyway, we are glad you are here!
Red
Anyway, we are glad you are here!
Red
I had no idea about the coke and coffee before an LP. Luckily I had no problems without it.
Welcome to the board!
Welcome to the board!
Hi there
Love the picture and I am guessing that your are not the clown, but have learnt in life not to make assumptions!!! I just wanted to say that you are very welcome on this great forum and I only joined in March this year but already feel like an oldie and probably spend far too long tapping away on posts.
Anyhow I am sorry that you are going through all these horrible tests and finding out the hard way. Nothing prepares you for this journey and endless soulsearching as to what is wrong. Everyone reacts in different ways..for some the diagnosis is a relief and for others it is a shock. I fell into the latter group but for all of us it is a loss and represents a crossing over into a new life experience and a reevaluation of what is important in our life.
I wish you a peaceful journey, answers to your questions and if I am honest..prayers that it is not MS. Whatever the outcome, you are most welcome and I am sure with your obvious wanting to help others, you will be a great asset to this site that is filled with the most compassionate people I think I have ever met in my life. If I had not been diagnosed with MS I would not have been blessed with making these new friends.
With love
Sarah x :)
Love the picture and I am guessing that your are not the clown, but have learnt in life not to make assumptions!!! I just wanted to say that you are very welcome on this great forum and I only joined in March this year but already feel like an oldie and probably spend far too long tapping away on posts.
Anyhow I am sorry that you are going through all these horrible tests and finding out the hard way. Nothing prepares you for this journey and endless soulsearching as to what is wrong. Everyone reacts in different ways..for some the diagnosis is a relief and for others it is a shock. I fell into the latter group but for all of us it is a loss and represents a crossing over into a new life experience and a reevaluation of what is important in our life.
I wish you a peaceful journey, answers to your questions and if I am honest..prayers that it is not MS. Whatever the outcome, you are most welcome and I am sure with your obvious wanting to help others, you will be a great asset to this site that is filled with the most compassionate people I think I have ever met in my life. If I had not been diagnosed with MS I would not have been blessed with making these new friends.
With love
Sarah x :)
COMMUNITY LEADER
Hi and welcome,
Sorry you've not had a response for so long, quite unusual must be the time of year has got everyone busy busy busy! I'm also sorry for the reason why you found this wonderful little community, who hail from all over the world. Put the kettle on and stay for a while :-)
We like to let all the newbies know about the health pages, top right of your screen, yellow icon. There you will find answers to many of your question, some you may not of even thought of yet, well worth taking the time to read.
I was going to fast too but many wise words from those in the know said to drink coffee and or coke until its coming out your ears, or something along those lines lol. Not sure what was worse, the LP or needing to go to the looooooooooooo and being placed right next to a sink that always seemed to be running, ahhhhh water tourcher ROFL!
Again welcome!
Cheers...........JJ
Sorry you've not had a response for so long, quite unusual must be the time of year has got everyone busy busy busy! I'm also sorry for the reason why you found this wonderful little community, who hail from all over the world. Put the kettle on and stay for a while :-)
We like to let all the newbies know about the health pages, top right of your screen, yellow icon. There you will find answers to many of your question, some you may not of even thought of yet, well worth taking the time to read.
I was going to fast too but many wise words from those in the know said to drink coffee and or coke until its coming out your ears, or something along those lines lol. Not sure what was worse, the LP or needing to go to the looooooooooooo and being placed right next to a sink that always seemed to be running, ahhhhh water tourcher ROFL!
Again welcome!
Cheers...........JJ
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