It always feels a little strange to 'welcome' someone to this group that no one wants to be a member of.... but welcome to our 'family'.

You've found a great place for support. Most of us understand your frustration and what you are going through. It's especially hard when you don't have anyone in your personal life you can turn to.

The only suggestion I can give you is try calling your neuro's office and asking to speak to a nurse. They need to be aware of your new symptoms and may be able to perscribe something that will help. If you can't get a response from them, you may need to consider finding another neuro... which I know can be difficult in itself.

Please keep in touch and let us know how you are doing... we are here for you.

(((hugs))))
Lisa

Sorry you were diagnosed (dx) with MS. However, I am glad that you have a difinative diagnosis so you can start treatment (tx).

My hubby started having symptoms (sx) we both realized were MS related later at this time 8 years ago. We have had 2 kids since and are going to Disney later this year. My point is that it was hard for him (us) in the beginning but there are still many things you can do and lots of life left to be lived. Breathe and take one day at a time.

I would also say to read all you can so you can be your own health advocate. Below are a list of links to info you may find helpful. I wish you the best of luck. Please always feel free to come here and vent, ask questions and share information that may help everyone out here.

Best wishes to you,
EP

1.) MAIN MS Drug treatments
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/13042864
CRAB drugs have been out for a long time so they safety has been more established.
~newer Gilenya (+ oral med, - Heart issues in some) by 54%

2.) Top 10 List of What Has Helped
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/14005425

3.) Steroids & Reducing Inflammation
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/11643767

4.) 2 Tests: They relate to Immunity and Inflammation
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/14990015

Thank you, it's good to hear from other people who know exactly what i'm going through. I'm still looking around at medications, i'm terrified of needles but the Gilenya has more side effects. I feel like my symptoms are getting worse fast.

I do feel lucky that i got diagnosed so fast, i spent 4 months in and out of the dr's office trying more test to figure out why my fingers were numb.

Hi

Welcome to dx and congrats on a fast dx. This is the best place to be if one has ms.
If you are in a flare you need to talk to neuro for treatment.

Alma

Welcome to the group :) This really is a great place for support. A great group to talk to, vent and not feel alone. I see you are in Utah. I'm in Utah too. You've been given some great advice here, I can't really add to it. Just know you aren't alone!

If your neuro is out of touch, and you aren't receiving the action you want and need from him/her, I would encourage you to seek out a second opinion. The diagnosis may not change but the course and speed of action may.
I join the others in saying welcome to our family! We may not want to be here, but are so very thankful for the support! ((HUGS))

Amy

Hi, and welcome to our family.

I think my advice would be reflective of LisaCa's. I too am not taking any MS disease modifying drug and am risking further disability by not being on any meds. I am waiting for BG-12 to come out next year, which isn't really that far away now. I feel like I'm playing Russian roulette with my health! However, what is really discouraging is the fact that your doctor has not immediately gotten you on a medication and is taking so long to take any action. It appears your disability is growing and you need someone who is going to be attentive to your health now. I think you need to find another neuro, one that would be responsive. But of course, that may be a difficult thing to do at this moment, so call the nurse like LisaCa recommended and try to get some immediate help and get the ball rolling on getting you on Gilenya. Good Luck! Keep us posted on what is happening with your care.

Sorry you're having such a tough time. It's scary and confusing being newly diagnosed. Believe me we all have felt what you are going through. You are not alone. You've gotten some good advice here. I hope you are able to get some relief soon. ((HUGS))

You guys are all so awesome, and have given me some great advise. I called my neuro's nurse and she was shocked that my dr never ordered an appointment to see a neuro opthamologist before i start observation in the hospital for the Gilenya. She got all my paperwork in order and was able to get the ball rolling with the drug company. Now i just have to wait to see the eye dr before i can start treatment.

I feel like i've been waiting for months now! Thanks again, everyone for the support. No one around understands what i'm going through. Even when i look fine, they can't understand why i'm so tired or why i hurt all the time or why i get so frustrated when i'm trying to button my baby's cloths.I live right next to a beautiful park, but they think i'm crazy for not taking my kids there when it's 95 degrees outside.

This is what I would do......it sounds like you are having a major flare right now and you need steroids to calm your body. There is a steroid called ACTHAR that works. It is a 5 day sub cue injection. I am currently on my 4 th shot and my nerves have calmed down. It is a very expensive drug. It is $25,000. No joke. Go to there website ACTHAR.com and read up on it. (Insurance and funding is available to help)

I just read that the FDA is making there descision on BG-12 at the end of 2012. It looks promising and it is pill form. You may have been dx at a good time. ( not that there is an ok time 2 be dx'd)

Please feel free to message me if you want to talk. I have had this crap for 22 years now and still do walk--- not the best but I can. I am 41.

Good luck--- we are all here for you.
Hugs,
Amy Jo

Welcome!! I have been out for a while but I just stumbled upon your post and wanted to tell you, if you ever need anything, Just message me and I will try to help you. :) I wouldnt worry too much about the symptoms at this point. When I get too hot, I cant walk but as soon as I cool down, I am fine. Feel free to message me anytime!

May I ask how long it took you to get your DX.I cant even see my neuro again until December.You take vcare of yourself and lean on your family and friends and your friends here.Ellen

It took about 4months to get an official dx, i was lucky enough to have a dr who actually cared (even if she thought i was a hypochondriac at first). I'm still pretty scared about the medication, the side effects are pretty intimidating.