Newly Diagnosed

[cnewlin]

40 yr old female diagnosed in September. I had been feeling like I had come to terms with my diagnosis until today..I received my autoinject in the mail today and I broke down.

[jimeka]

Oh cnewlin, I am sorry, you are not alone, we all break down at some time, and it's better out than in, after all you are only human. Sending you a big hug 🤗 vent on here at any time, blessings Jimeka 🌈

[cnewlin in reply to jimeka]

Thank you!

[joys-an21]

I think we all gone through times when we are overwhelmed by something that happens. It doesn't mean you are weak, or that your courage has left you. It may take a day or two, but I bet your resolve will return and you will keep on keeping on. Thanks for sharing that and giving others who've had similar experiences a chance to reach out. Take special care!

[Sparklephish]

Don't worry it's something we all know and understand too well. I'm happy you, and all of us, have a place to talk about it. There is usually at least one person who's been there and done that. Welcome to the fight and know you are on a team that's going to fight with you! I'll always be here for you along with many others.

[greaterexp]

I was diagnosed in September at 56. I understand how something can suddenly feel like a 2x4 to the head, when we feel we've been dealing with things pretty well. I hadn't shed one tear until two nights ago. I was with my husband's family, who were mostly seeing me for the first time since the diagnosis. I suddenly started having a lot of muscle spasms and pain and asked my husband to take me home. I began crying, and am not sure if it was the pain, the embarrassment at disrupting the evening, or the realization that life had really changed. I think we will accept things in stages, some of them more abrupt than others.

This chat room is such a blessing. No one can fix anything, but having people who can relate and many times offer suggestions or support has kept me going sometimes.

I pray you find all the support you need. We are all your cheerleaders here.

Erin

[cnewlin in reply to greaterexp]

Thanks Erin, not everyone knows I have MS, just family and a few close friends at this point. We had a bit of snow/ice yesterday morning so it was a bit slippery on the sidewalk/steps (I have balance issues to begin with-lol) I was faced with the fact that I can't do certain things the way I once could. So on top of receiving the autoinject yesterday it was a bit of a slap in the face. I'm very lucky that at this point it is very mild but it scared me as to what it may be like in the future. 😊

[Karen-x in reply to cnewlin]

Cnewlin, welcome! Where do you live? I had snow/ice yesterday morning too.

[cnewlin in reply to Karen-x]

PA

[Karen-x in reply to cnewlin]

What part if PA? Im just south of PA in Carroll County, Md

[cnewlin in reply to Karen-x]

Chester County

[SueAB in reply to cnewlin]

Crewlin. You mentioned that your MS is very mild and if you are like me it may stay that way. I was DX in 1988 and my Neurologist still says my MS is very mild - even though it does not always seem that way to me. I walk with a cane when I go out, ride my adult trike, swim laps and lift weights. I still cook, do laundry and light house cleaning. Live your life as best you can today. No one even without MS can tell what the future holds.

[Ali_Mac]

You're not alone, cnewlin!! I've been where you are. I'm 35yo and I've been injecting Rebif (3x/wk) since 2004 at 22yo. I cried then, but it will not always be that way although sometimes I may still cry. Once you find a routine that works for you, things will begin to get better. Please send me a message if you need a smile/laugh and would like to know how I found a way to get through it. 😀

[cnewlin in reply to Ali_Mac]

You are right, it will be an adjustment until I get into a routine with the meds. Do you like Rebif..any side effects? I'm starting Copaxone and I know they are similar so any feedback would be great!

[StacyHayward in reply to cnewlin]

I'm on rebif and love it. Nearly twelve years now. Remember just because it's an autoinjector doesn't mean you have to do it alone. We've always made shot time family time. Because (rarely) it can hurt like crazy I make someone else do it do I don't yank the needle out. Also I find with my hands it can be difficult to do it alone. My son could do it by age 8. Having help makes it easier to stick with it.

[SWEETCAT in reply to cnewlin]

Hello cnewlin,welcome I too am taking copaxone. I have been on it since 2007. And I have to say I have no problems with it,I do get welts and itching but it all disappears after a few minutes. My biggest issue our the muscle spasms and the anxiety. But I do have a milder case then I could but still doesn't mean U won'thave your down days. I am from MI and the coldweather conditions right now are nothing to joke about. Very hard on me,more then ever before. I have to stay warm no chills or I am in lots of pain. Well I hope U have a good experience with your copaxone,are U on the 7days or 3 day injections? Hope to beable to chat with U at anytime. Take Care.

Cathy

[cnewlin in reply to SWEETCAT]

Thank you for the feedback! I will be starting the 3 days/week which I am a bit nervous about..the cold weather bothers me as well, the colder it is the stiffer I feel. My feet seem to suffer the most.

[Ali_Mac in reply to cnewlin]

Try foot warmers and heating pads with a safety, shut-off feature. My hands & feet are always cold too, all year round, so I sleep in socks.

[Ali_Mac in reply to cnewlin]

I started Rebif injections when there were no pills available, so I wasn't looking forward to taking shots. At first, I could not do the shot (psychologically)! It was a very foreign and sometimes unpleasant method of treatment, but making some adjustments and coming to terms with my 'reality' helped most days become better than others. Slowly, but surely. I've gone 9 years without symptoms. 3 years ago I began having pain, nausea/vomiting and I've considered switching to another medication. But after learning about certain adverse effects, I think that I may just stick with Rebif.

[erash]

cnewlin we all have our kryptonite and even superman was human beneath his cape.

[Karen-x]

Welcome Cnewlin. I think we can all relate. I was diagnosed exactly on year before you. During that time I have had many times of tears, anger, acceptance, denial, and surprisingly, happiness.

I have a great husband who helps me in so many ways. My family is a mixed bag. Some are very supportive and others seems to have stuck their head in the sand and pretend I'm normal. (Believe me I've never been normal 😂). I Try taking one day at a time.

I also use copaxone. I am in a good routine but there are days I just don't want to inject or it is more painful (in my.mind no doubt). I just forge ahead especially since hubbybwont let me skip an injection. Lol

Karen

[cnewlin in reply to Karen-x]

Karen,

I too have an AMAZING husband who supports me every step of the way, he makes me laugh, holds me when I cry and constantly reminds me I am not alone in this. I'm not looking forward to the injections but being a mother I will do what needs to be done! It is nice to chat with people who are going through this too because as supportive as my husband and family are they can't fully understand what it's like.

[Fancy1959]

Cnewlin, it's Fancy1959 welcome you to our chat room. I wish you didn't have to find this chat room because I wish you weren't diagnosed with MS but you have been and we are here to help. We have broad shoulders if you need us we are just a post away,. You have found a safe and compassionate place to do so. By sharing our successes and our failures we can learn much from each other. Don't feel like The Lone Ranger. I believe everyone in this chat room has, at one time or another, reached a point where they have broken down in their own way.

I look forward to talking to you soon. Please keep your chin up and start bombarding us with any questions or concerns you might have. What I would like you to take from this first encounter is that together we are stronger! I would also like to invite you to become our newest MS Warrior. As an MS Warrior we never give up and we never give in. We just keep fighting. Even though your fight has just begun you need to join us fighting this monster that has invaded our bodies. So, fight on MS Warrior, fight on!

[katepoet]

You don't have to take it. Try Protandim first. It tested stronger than Tecfidera but it's herbal and when it works, it works great against MS.

I did 6 mos of copaxone, then the study on Protandim came out, I switched. I got my brain back! Wonderful!

[bavery207 in reply to katepoet]

Is Protandim just for RRMS? Or has it been effective against PPMS also?

[katepoet in reply to bavery207]

All MS and some other diseases, too.

[Kimlovesshoes]

Hello,

I too had a difficult time excepting my diagnosis. However, gradually overtime and still to this day I am coping with my diagnosis and in knowing that GOD IS SO GOOD! and he will guide me. Try to stay as active as you can and know that this is not a set back, but a set up to see how strong you are.

[Donna_uno]

I haven't been on the chat lately, I want to welcome you also. When you don't feel like replying it's good to just read the chats. The encouragement is awesome.

When I'm discouraged , remember it's not fatal, just a painful annoyance .

,

[cnewlin in reply to Donna_uno]

I remind myself of that EVERYDAY!

[Jesmcd2 CommunityAmbassador]

Hi cnewlin ~hugs~ you made it along time before breaking down, l broke down in the Drs office. 😞 I was dx'ed 18mos ago and so remember that feeling of your feet being swept from under you. Then it becomes reality. Like a slap. Ugh. We have all been there. And copaxon loves to call me and do a review and remind !E how long l have been on it. 😑

Best hint l can give you is to ice before and after. That's what works for me anyway. ☺

Are you ready for the holidays?

Jes🎄

[cnewlin in reply to Jesmcd2]

Thanks for the advice! I broke down when diagnosed as well, I held it together in the office but lost it in the car. I felt like my life had just been taken away, I know that may sound dramatic but at that point I had no idea what I was facing. It was such a long process of testing..6 weeks and the lumbar puncture knocked me down for a good 10 days! I couldn't sit up for more than 5 minutes without feeling like my head was going to explode! I'm so happy that process is over and hope that the injections help/hauls the progression! I'm looking forward to good times with my husband, daughter and friends😊

[Jesmcd2 CommunityAmbassador in reply to cnewlin]

cnewlin of is like your life has changed. You aren't being dramatic at all. There's the before (old me) MS and after (new me) MS . I just can't always control the new me 😅

I have heard alot about the lumber test. I never had one and at this point I don't think l ever will. 😕😅

Just take it day by day and always enjoy family time!!!!!

We are always around☺ and you were told this is a good place to vent right? Or need a sholder to cry on

Jes🎄

[SWEETCAT]

Hello everyone,I hope everyone is doing well with getting ready for the holidays🌲🎅🍭 Myself on the other hand am not ready,juat in the last 3 days have been layed up in bes. From headaches and vertigo. To numb legs and feet. And oh my the tingling through my body. So then on top of all this does Fatigue really have to get in on it too?? Very stressed and depressed and can't kick it... Headaches are gone thank goodness!! HELP ANYONE