welcome cal and sparkle,

i'm glad you two have found NT. there's a lot of information and support to be found here.

looking forward to more of your posts.

Newby Howdy
 

Hello Sally
I have just happened on to this site and registered today. My brother (51) was DX about two years ago with PPMS. In the last 6 months he has lost the ability to talk, gotten a feeding tube, a trache, and was admitted to the hospital yesterday because now he can't hold his head up and the his vision is getting worse. I just don't understand the speed this nasty disease. I still don't understand enough about it because we have been dealing with the symptoms no time to do more.
I am looking for education and suggestions what a sister can do to help her big brother.
Thanks for listening
Marrianne

I am Sally, and have been DX with MS for 32 years, with symptoms dating back to 1964. :eek: Yep! Long Time. The good news is, I was in remission for 18 of those years. I am now SPMS, can still walk, but use a scooter around the house and for outside distances. I walk as often as I can, so I won't lose the ability.

I am on LDN (for 3.5 yrs) to steady my MS and Paxil for Anxiety. I have used Avonex and the Copaxone in the past.

Tell us about yourself and ask any questions you want. We are here to support you in your fight and your coping with MS. We might even have some fun, while you're here.:D

Best Wishes,[/QUOTE]

Welcome Cal, Sparkledust and Marrianne,

So glad you all found Neuro Talk. We are a friendly group of people, but we are serious when we try to help with your questions or concerns.:) We try our best. Someone will answer you or give support to if needed.

We have daily concerns too. We learn from each other too.

So join us, post down on the forum below, or pop in on someone else's post. We love new people.

Nice to meet all of you.:)

Welcome Marrianne. I am so sorry to hear about your Brother's rare progressive type of MS. Please do join us inside and ask anything you want. We will try to help you and your DB, as much as we can.

:hug::hug:

Insurance denied Copaxone
 

My daughter in law has recently diagnosed MS. She is a student and has, I think, Aetna Insurance. They have a limit on the amount of money they will pay for medications. They went to fill the Copaxone and it was denied.

My son is also a student, they have no income. They are applying to NORD for help at the suggestion of the people who make Copaxone.

I'm wondering if anyone has any suggestions.

Thanks,

PabroCB

Hi and welcome to NeuroTalk! :)

PatientAssistance.com is a free resource designed to help connect patients who can’t afford their prescription medications with patient assistance programs. This might possibly be of some help.

http://www.patientassistance.com/pro...ceuticals-110/

Hi pabrocb,
Welcome to the NT forum. It is hard enough getting a dx of MS and having ins, and still be declined. When I was on Avonex and then Copaxone with my own ins they paid for it.

When I had to go on my husband's ins they denied it. I wrote the ins company a very strong letter saying how I needed the drug as my only available treatment ..back then.

They appealed their decision and paid for it for a few years until I had to stop it. Remember the squeaky wheel gets the grease. Don't be shy, have her write to them, call them, she may have to fight to get her ins co to pay for it.

Then she can try for assistance with Nord. I don't know why the ins co won't pay for a medication she needs if she fights them for it.

Welcome to both of you, and nice to meet you. Tell us how your DIL makes out and when she gets the drug. Good luck.:)

Welcome PabroCB..nice to meet you. Come on in and join us.

All of you who have only posted one time, please don't be shy. :hug:

Hello - my name is Patti and I don't have an official diagnosis yet. But, I am almost certain I have MS and have had it for at least 15 years. I know MS can be difficult to diagnose and symptoms are often vague.

During the last 12 months, I've had several "occurrences" involving vision disturbances, leg weakness, lower back pain, balance issues, just to name a few. I had an MRI/MRE 3 years ago, again one year ago without any definitive results, yet I am still "not right" if you know what I mean and I'm sure you do. LOL

After waiting 6 months to get an appt. with a neurologist, I have recently had MRI's of the head and spine and just this week, an EEG and 3 evoked response tests ( audio, visual & stimuli) and a comprehensive blood panel sent to the Mayo Clinic. I go back to the neuro guy April 4th for all the results.

I'm 59 years old, have 2 grown children and 5 grandkids ranging from a toddler to a 16 year old. I'm married, semi retired and work from home, have four dogs and work with Boston Terrier Rescue.

I have to admit that I'm scared and am having a hard time giving "voice" to my feelings and fears. Saying certain things out loud can make them all too real. I'm glad I found this forum, not only to learn, but to have as an outlet. Thanks for listening to me.

Hi, another newbie here
 

Hi,

My name is Laura and have many symptoms that seem to link to MS. Currently I have been dx'd with fibromyalgia, chronic fatigue and chronic vertigo.

I have come to a time in my life where I cannot get around unassisted and am currently owner training a Service Dog to help with my daily life.

I am seeing a neuro this week and am hoping for some help from them, since my regular dr says I'm "fine". Can't walk by myself, can't drive, fall over all the time, losing my ability to think and talk, but I'm "fine".:mad:

Welcome to NeuroTalk and the MS forum, Patti. :)

I hope you get all the answers you need on April 4th? (although that's a Sunday;))

In the meantime, please do join us in our little nest of MSers, Limbolanders and caregivers. Visit The Stumble Inn for a little off topic fun. There are lots of other informative and fun forums within, also, so, enjoy your new home. :)

Welcome, Laura, again. Come on in and grab a chair or a bankie and settle right in.:hug:

LOL Need to check my dates and thanks for the welcome.

Hi Patti (ZSPW) and Laura (artiemouse),
Welcome to NT. I am happy to see you both found us. :)

Patti, I, too, hope you find out some answers soon at Mayo. We all need to know why we have these symptoms. Good luck and nice to meet you.

Laura, we have another member on here with a service dog. She loves him and he does wonders for her. I hope yours is just as helpful once trained. :)

It is so hard when you have problems and they can find a cause. You know you have symptoms they can see, but I guess they can't decide what kind of Dx to give you. Nice to meet you too. Good luck.

I hope you both feel better soon and get some answers.:)

Hello Patti and Laura!
 

I just wanted to pop by and say :welcome_sign:

You've found a wonderful place FULL of support and information!
It's good to have you!

Hope to get to know more about you!
:hug:

Rae

Hi Patti and Laura. Welcome to NeuroTalk! You've found a great place to come for support. I hope to see you around the forum.....don't be shy......we're not!! :D

Hi all
 

I found this site when doing a search on magnesium citrate.
I'm a 56 year old woman living in western Mass with my family. I have IBS-C and there is a question of lupus.

Hubby has asthma, pretty bad allergies and diverticulitis.

My 20 year old doesn't have many issues beyond dandruff and Keratosis Pilaris. Which we cured with 2 packets of Coromega (fish oil) 5 times a week.

My 17 year old son has aspergers (high functioning), ADHD, dysgraphia and a few other comorbid differences. He is a good kid but can be difficult at times with his rigidity.He has been on Magnesium glycinate from Kirkman labs for 9 years to help with his hyper activity. It seems there is a lot of discussion about magnesium here. I want to try to figure out if he should stick to the glycinate or move to something else and how much he should be taking. I'm also hoping to see if there is anything else we can do to help him.

Normally I would always be searching for ways to help other members of my family. But this time I need to do research for myself. My chronic constipation has gotten totally out of hand, and this is what I am going to try to get info for first. Recently I have started taking slomag and have found it very calming. But I'm thinking another form of magnesium could still be calming but help with my IBS-C issues. Also for a number of years the pain and spasms running down my left leg and hip, pain and swelling in my feet and hands have kept me from exercising. I used to love to walk and garden but now it just hurts to much. I've gained 30 lbs in just about 4 years. Right now there is a lull in my pain but it normally starts up again in the heat of summer. A number of years ago my Dr thought it may be arthritis since it runs in the family. But after running a few blood tests they now believe it is lupis.

Anyway, I am glad I have found this site and have already mentioned it to friends at another site.

Ciao for Now.

Hi again MsBees,

You do have a lot of questions that you are concerned about right now. Wow! Have you gone to our forum on ADHD and a few other disorders in children?
Here:
http://neurotalk.psychcentral.com/fo...aysprune=&f=39

No one can tell you what medication your son should be taking and the amount. That is up to you and his doctor. We do talk about Magnesium on here in connection with MS, or constipation, etc.

I have a similar ailment to IBS-C and similar to Crohn's, called Collagenous Colitis or microscopic Colitis. It is not affected by nerves or stress, it just is a autoimmune disease.

I take LDN now for two years and it is gone. I just had three biopsies and they could not find these C plates.:)

They tried to add Lupus to my collection of autoimmune diseases because my ANA is around 1:640 and my ESR goes to the 70's at times. But there is a criteria you must meet to have Lupus, I only have a few.

I think you should see your PCP to see why you are holding fluids and swelling. Perhaps go to a Rheumatologist to get more testing for Lupus and Arthritis. They have medications like Placqunil (sp?) and some more new ones for Lupus. Then there are a few types of Lupus too.

Have you had you back checked for Sciatica? That back pain, hip pain, running down your leg could be that. There are so many diseases/disorders that you should be checked for, because of all your many symptoms.

I hope you find pain relief soon. :)

.

hello to all the new folks. I see Artiemouse is now posting on the main boards, and I hope others will follow so we can help address some of those issues you speak of.

I hope patti gets answers (even on sunday) and gets that relief of knowing either way.

MrsB I too have IBS and it can cause many things. the majority of our immune system lives in our guts, and it when its not happy, it can trigger all sorts of things. Miralax is a great laxative, and can now be gotten without a prescription. Come on down to the main board, and tell us all about yourself. we would love to hear it.

im new!
 

Hey yalll.. I'm new here... I'm 22 a student in Montana but originally from Mississippi! I love the mountains and all there is to do out here, however, in December of 2009 I was diagnosed with Chiari Malformation and am awaiting my 2nd opinion currently. My first neurologist suggested surgery in Washington at the University. I am very nervous and just leaving things in God's hands for now! I'm happy to be here and open for chatting!
xxx:D

Hi tupelophoney,
Welcome!

So glad you found us. We have really great people on this NT forum. Very kind, and caring folks. We will try to help you in any way we can. I hope you have nothing serious but you can read this forum below if you want some information on Chiari.

We have a Arnold Chiari Malformation & Syringomyelia Forum: The link is below or stay on this MS forum if you like. We all love new people.:)
Nice to meet you.

http://neurotalk.psychcentral.com/forum71.html

Hi I am new to this Board, but not new to MS. Have been dx since 2002, with symptoms that began in 1985. It took awhile:)
I am a music teacher. I have not had a major flare in about 2 years and am grateful to still be able to work.
I am active in our community theater and arts center and hope to be able to continue with all that I love to do. I do get tired easily, so I have to watch what I commit to. I am married and have twin daughters and two grandsons. Life is good.

Hi, Miss Pammy! I like your attitude. (Now if I can just emulate it!) Welcome to our community. You'll find lots of support here. :grouphug:

Welcome to NeuroTalk Misspammy. I'm glad you found us and are joining us..:)

Hi Misspammy! Welcome to NT. I'm happy to hear you're doing so well. Please feel free to jump in anywhere here. :)

Another Newbie guy
 

Hi I'm Cal
I'm over 70, with mild neuropathy in my toes, neurogenic bladder - have to cath regularly. Not on any meds other than Armour thyroid & DHEA.
(A host of supplements, tho) Do B-12 shots 3x/week

The VA, after lots of tests and two types of MRI's said my bladder issue is neurological - no signals from brain to bladder.

My suspicion is that both foot and bladder issues are caused by autonomic neuropathy.

Learning how to use my Interferential Therapy unit on these issues.

Looking forward to learning from this forum.

Finally, somebody older than I. :D:cool:

Welcome to NeuroTalk, Cal. :hug:

I hope you are here to stay.

Hi misspammy,
Welcome to a wonderful place. That's right, NeuroTalk. Great people here, and we are glad you joined us. I hope if you have any questions or can answer some of ours, that you jump right in the posts. Nice to meet you. :)

And a big Welcome to you too Cal. Glad you found NT. We love new people. I hope you feel comfortable with your new friends, and will post often.
Do you have MS--or neuropathy--or both?
Nice to meet you. :)

New Here
 

Hi,
I was diagnosed last July 15. I cannot believe it has been a year already. I had double vision. Mid Sept. I started Rebif. However, due to a decreased white count I was only on the full dose for a month. I have been on the 22mcg dose. I have not had a relapse since last July. My white count is starting to drop on the 22mcg dose, so I am seriously considering stopping the Rebif. If I had to do it all over again, I don't think that I would have allowed the doctors to talk me into starting a DMD. Personally, I believe that not having a relapse over the last year had nothing to do with the 22mcg dose of Rebif. When I first started Rebif, I did a slower titration over 4 months and one of my doctors told me that I really needed to get on the full dose so that I would not relapse. Now that I can't take the full dose, I am told that 22.2mcg also works, too. It can be confusing. I don't want to go on Copoxone due to the IPIR reaction. I live alone in a very rural area. During the winter, it can be difficult to get out, so if I needed 911, it could be a problem. Anyway, I am interested in hearing other opinions about this. Looking forward to meeting others.

Welcome. Luv, so nice to meet you.:)

I hear you about the DMDs. Darned if you do and darned if you don't? You do whatever your body tells you to do.

Sorry as to why you are here, but glad you found us. Please join us. :hug:

:Wave-Hello: Hello LuvSunflowers and :welcome_sign: to NeuroTalk.

Nice to see you here ;)

Have you enabled the PM feature?

Hi Snoopy,
Nice to see you here too!! I can't seem to figure out how to enable the PM feature. :(

Click on UserCP (it's in the bar above) then click on Edit Options.

I checked that. I only have an option for public pm's not private pm's.

LuvSunflowers
Hello,
I copied your first post to a thread of it's own.
here-
http://neurotalk.psychcentral.com/thread125259.html

The private messaging should be in that same area. If you are having problems one of the admin/moderators could help, their usernames come up in green. Hopefully you can send them a message and one of them can help you.

I tried that, but it won't let me contact them either. This board must have shut down some features for new members. Very frustrating!!

Hello...

You should be able to use the "contact us" feature at the very bottom of each page.

Until you have a certain number of posts, sending PMs is blocked for new members. This is because spammers were using our member list to send offensive and otherwise messages to our members, so that function was closed for just new members.

New members CAN receive PMs however, and then use the "reply" button to answer. So someone here can send YOU a message and you can then reply to THEM. It won't be long before you leave the "newbie" status, just make a few more messages and you will be active.

Please understand this was done to protect the community in general from unwanted solicitations.

Ok now I understand. Snoopy, can you PM me, so that I can test my PM.:)