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Re: Welcome to ThisIsMS

Postby lyndacarol » Sun Dec 14, 2014 4:35 pm

jimmylegs wrote:nice and recent. curious if you had a serum mag test at the same time, to see if that older 2.2 level had made it up into the 2.3-2.7 neighbourhood at all?

I did not have another serum mag test at the same time. I had a doctor's appointment to discuss a new schedule of B12 injections; he suggested basic blood testing – I did not think to request magnesium testing.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Sun Dec 14, 2014 5:32 pm

ah well. do you happen to have a handle on your daily mag intake at this point in time? are you still supplementing? or are you sticking with dietary measures at present?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Welcome to ThisIsMS

Postby Inky » Sun Dec 14, 2014 9:58 pm

Hi,

My MS started with permanent paralysis from the waist down in 2009. I've been coping pretty well. I was in rehab together with spinal cord injured people mostly and adapted quite well. I live by myself and only get some help with the household once every two weeks. Last year I got my second attack which was paralysis of my left arm. That most healed luckily. My question is if you've ever heard of a similar way the MS has behaved? (sorry, English is not my first language) I tried to deal with the emotional part of it all as well as I could and for years I thought I was kind of ok with it. The last two years have been tough with a heavy operation (mistrofanoff) and the mentioned second attack. Lately I've been feeling down and sad and honestly I get so tired of it all. I don't mean life, but the MS
I had managed to stay so positive and active for a long time. And now I just can't seem to find the right track... Any suggestions? Thanks!
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Re: Welcome to ThisIsMS

Postby lyndacarol » Mon Dec 15, 2014 10:04 am

Inky wrote:Hi,

My MS started with permanent paralysis from the waist down in 2009. I've been coping pretty well. I was in rehab together with spinal cord injured people mostly and adapted quite well. I live by myself and only get some help with the household once every two weeks. Last year I got my second attack which was paralysis of my left arm. That most healed luckily. My question is if you've ever heard of a similar way the MS has behaved? (sorry, English is not my first language) I tried to deal with the emotional part of it all as well as I could and for years I thought I was kind of ok with it. The last two years have been tough with a heavy operation (mistrofanoff) and the mentioned second attack. Lately I've been feeling down and sad and honestly I get so tired of it all. I don't mean life, but the MS
I had managed to stay so positive and active for a long time. And now I just can't seem to find the right track... Any suggestions? Thanks!

Welcome to ThisIsMS, Inky. Historically, MS was first called "creeping paralysis."

You asked for "Any suggestions" – here are mine: Since English is not your first language, it may be difficult for you to find or read this book, Could It Be B12? An Epidemic of Misdiagnoses: http://b12awareness.org/could-it-be-b12 ... diagnoses/

If that is the case, I urge you to study the website, B12 Awareness, thoroughly and watch the videos on their home page – there is lots of good information there!

In one of the videos, the author Sally Pacholok comments that MS and B12 deficiency symptoms are the same; one cannot tell them apart from each other.

You have found a group of new friends. We don't have all the answers, but we are happy to share our ideas and experiences. We are here to help each other.
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Re: Welcome to ThisIsMS

Postby debwood827 » Sat Dec 27, 2014 6:39 am

Hi all! I am Deb. I was dx in 2008 with RRMS after 10 years of tests and insanity. I have done the Avonex, Betaseron and Copaxone. Was sick the entire time. Falling, dizzy, cog issues, anger and exhausted all of the time. In August of 2013 I quit the Copaxone, joined a gym and got a part time job at Home Depot. I am doing really good. I work with a man that also has MS. They are very understanding at Home Depot. If I am flaring up they give me a day or 2 off if needed or put me to work in a sitting capacity! :-D I just celebrated my 1 year anniversary there. I think getting off my "oh poor me" butt and getting back out with real live people has made all of the difference in the world! I was actually becoming fluent in Chihuahua. I have 3 that keep me going! I am looking forward to getting to know people here. I hope to also be a good support for those here when I can :razz:
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Re: Welcome to ThisIsMS

Postby jimmylegs » Sat Dec 27, 2014 7:00 am

welcome to the forum, deb!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Welcome to ThisIsMS

Postby AndreaHall » Sat Feb 14, 2015 7:26 am

Greetings! My name is Andrea, and I've been lurking about for the past week or so, reading all the good info here. I'm 38, and was diagnosed last year. At first, I read all the textbook type information I could about the disease, and looked at all the pictures of happy people on the MS Society website. I found a book that promises self healing is possible. I listened to my friends and family tell me just to keep a positive outlook, that if I just stay positive and active everything will be fine - everybody seems to have a friend of a friend with a story like that. My mom told me to "keep your eyes on the prize" - I don't even know how that can possibly be applied to a progressive disease like MS. What is the prize? And my sister refuses to learn anything about the disease and its effects because it makes her sad. I do have a couple of truly wonderful, supportive people in my life, for whom I'm eternally grateful - but I'm afraid I'm going to burn them out.

Which is why I came looking for people who could understand and have similar struggles. Maybe get some good advice and support, and be able to offer the same in return. It was so nice to read everyone's honest accounts about this disease. You've built a great community here. Thank you all for sharing!
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Re: Welcome to ThisIsMS

Postby jimmylegs » Sat Feb 14, 2015 7:29 am

hi and welcome, andrea!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Welcome to ThisIsMS

Postby funstuff » Sat Mar 21, 2015 4:30 am

Hi...!
I'm a 40 year young lady, who is in the hospital for the second time in 7 month.
W weekness in arms and legs +pain. Was just told 5 days ago, I got RRMS.
I'm in acute rehab center, and can't wait to come home. Tell me this. It always takes me 2 weeks of rehab after an episode. Is that normal.?
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Re: Welcome to ThisIsMS

Postby youngone97 » Wed Jun 03, 2015 5:23 am

Hi all!
I'm emily and I'm currently 17 years old. I was diagnosed with RRMS almost three years ago and was on rebif injections for 12 months. I've recently been re diagnosed with RPMS and have since changed medications to Tecfideria. My parents decided it might be a good idea for me to join the forum and connect with other sufferers and share/exchange stories considering I've been struggling quite a lot lately, both physically and mentally. I would love to get to know some people and maybe even people around my age, I was told it's quite rare to be diagnosed so young. Please anyone willing to reach out feel free to do so. I'd love to hear from you all.
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Re: Welcome to ThisIsMS

Postby lyndacarol » Wed Jun 03, 2015 7:17 am

youngone97 wrote:Hi all!
I'm emily and I'm currently 17 years old. I was diagnosed with RRMS almost three years ago and was on rebif injections for 12 months. I've recently been re diagnosed with RPMS and have since changed medications to Tecfideria. My parents decided it might be a good idea for me to join the forum and connect with other sufferers and share/exchange stories considering I've been struggling quite a lot lately, both physically and mentally. I would love to get to know some people and maybe even people around my age, I was told it's quite rare to be diagnosed so young. Please anyone willing to reach out feel free to do so. I'd love to hear from you all.
Hi and welcome, emily (youngone97). We are glad you found us and will join in our exchanges with your questions and experiences.

We have a sub forum entitled "Under 25 with MS" (under-25-with-ms-f23/) where it may be easier to find people near your own age. (although the "General Discussion" usually gets everyone's attention, too)

You may also find the "Tecfidera (BG-12, dimethyl fumarate)" sub forum at tecfidera-bg-12-dimethyl-fumarate-f52/ useful at times.

As you say, it has been "quite rare to be diagnosed so young;" but things seem to be changing: there are now so many pediatric cases of MS in the US that 6 pediatric MS clinics have been set up across the country. I have read that a child as young as 2 years old been diagnosed with MS!

We will be glad to hear your perspective.
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Re: Welcome to ThisIsMS

Postby PKE » Wed Jun 03, 2015 8:34 am

We live on the west coast, my wife has had the CCSVI procedure twice, once in WA the other at Synergy. Neither produced any noticeable improvements. Both were very professional and seemed to be well run.
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Re: Welcome to ThisIsMS

Postby My3kids » Tue Jul 07, 2015 4:21 pm

Hello Everyone!

My mom has had been diagnosed with MS since the 1970's. My whole life I have known her to fight this. Recently she has gone down hill very quickly. She is constant pain, forever headache, slurred speech, and extreme exhaustion. She sees Dr Ghandy (sp?) @ USF . Is on daily Copaxon shots, takes Bacoflin like its candy and tried the Ampro with no success along with the many other meds. They live 1000 miles away from me and my father is primary care giver with no relief.

She was just released from the hospital after a bout of what we thought was a drug interaction but from what I have read on here and other sites sounds like it might be "end stage". I am trying to figure out what that really is.

Can anyone explain to me the general ideas of "end stage" ? Anyone have any suggestions on how to get medicare to cover home hospice/healthcare for this type of situation?

TIA

Mom to My3kids in Maryland
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Re: Welcome to ThisIsMS

Postby NHE » Wed Jul 08, 2015 2:45 am

My3kids wrote:My mom has had been diagnosed with MS since the 1970's. My whole life I have known her to fight this. Recently she has gone down hill very quickly. She is constant pain, forever headache, slurred speech, and extreme exhaustion. She sees Dr Ghandy (sp?) @ USF . Is on daily Copaxon shots, takes Bacoflin like its candy and tried the Ampro with no success along with the many other meds. They live 1000 miles away from me and my father is primary care giver with no relief.

She was just released from the hospital after a bout of what we thought was a drug interaction but from what I have read on here and other sites sounds like it might be "end stage". I am trying to figure out what that really is.

Can anyone explain to me the general ideas of "end stage" ? Anyone have any suggestions on how to get medicare to cover home hospice/healthcare for this type of situation?


Welcome to ThisIsMS. I have sent you a private message which you can check by clicking on the messages link at the top of the page.
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Re: Welcome to ThisIsMS

Postby kitty2015 » Tue Aug 04, 2015 3:25 am

Hello all :smile:

Not sure if this will be posted in the right spot but here goes

I'm new here but I'm in the middle of MS tests it seems.
MS quite honestly is my worst case scenario but its been over ten years of unexplained nerve issues,ten years of multiple hospital visits,appointments,doctors etc..well you all know the drill.

Long story short last mis diagnosis was lumbar spine issues/disc prolapse and sent to a neurosurgeon, of course neurosurgeon couldn't help and so asked me point blank if I'd ever had an LP to test for MS(pretty little box of hope went bye byes).
When I could get my stomach out of my mouth I then went and finally looked up the dreaded MS symptoms list and it was like marking off a winning bingo card!!!!(mind you MS had been suggested by many other doctors previously, I was just to chicken to research it). :oops:

Turns out my new Gp agrees and told me his friend has MS
So neurologist appt was last week and he's booked me in for 3 weeks time to have :
Brain and Spine MRI,Nerve conduction study(ouch) and an EVP(whatever that thing is lol)

Also had full array of blood tests last week after I phased out at my local shops and became incoherent cause I was too confused and fatigued to function(kinda felt and probably looked like a lost puppy with alzheimers)thankfully I was meeting a friend for coffee up there so someone was with me otherwise I hate to think,was scary. 8O

Have lots of diagnosis test questions among other questions so which part of the forum can I /should I post in please? :smile:
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