What to do?

[nep420_]

New to the msaa community. I've been having a rough and tough time accepting my diagnosis. I went for a second opinion which confirmed.

[ssdw1958]

Hi nep420 I am ssdw1958 I have had this disease for 14 years. It is a hard disease to swallowed . When your body tells you to slow down listen to it. We do a lot of listening here and even if you don’t want to talk that is ok. We are not doctors here but we might let you know what we have gone through

Have a good day!!

Bye for now.

[nep420_ in reply to ssdw1958]

Tnx for thee advice much appreciated

[ssdw1958 in reply to nep420_]

Sure I hope that works for you.

[greaterexp]

I’m glad you found us right at the beginning of your new journey. I’m sorry you’re on the same road as the rest of us, but with the encouragement and support we receive and give here, it sure helps ease the load.

Remember that MS is very individualized, so my MS is not your MS.

It’s good to get the confirmation about our diagnosis so we can begin to consider DMTs and other therapies. MSAA has excellent resources, so do check them out on their main page.

Keep us posted on how you’re doing and feel free to vent and ask questions.

[Lilith08]

Welcome, nep420_ . It is a tough diagnosis to receive, so be gentle with yourself. I hope you will find the support you need here. And if you are able to meet others with MS in real life, perhaps give it a try--for me, I found it encouraging to see and speak to others who actually understand what's happening because as much as our loved ones may want to offer support, MS is definitely something you can't understand unless you experience it yourself. As I heard early on, "You don't 'get it' until you get it." Perhaps your neurologist knows of a local support group.

[nep420_ in reply to Lilith08]

Can the humidity cause a flare up or my syptoms to increase.

[Lilith08 in reply to nep420_]

I don't know about humidity itself but heat can make your symptoms worse. A lot of people with MS are sensitive to heat and/or cold. Do what you can to stay cool.

[Kitsey in reply to nep420_]

Hi nep420! I’m sorry that you have received the MS diagnosis. I have definitely been impacted by both heat and humidity. It can be cool and humid and my mobility and energy level are decreased. I wish you the very best and hope to hear more from you!😊

[Peruzzot]

Welcome to the group. If you go to the national MS Society website there's a link there that will help you find a support group that is close by where you live. If it's a good group you'll know it right away. They should be able to give you great advice and support.

[Linda3579]

Hi nep420, yes, it really is hard accepting

an MS diagnosis. I remember how scared I was. I, too, went for a second opinion.

In time you will accept it, and realize your life will go on with a some modifications. It helps to learn as much as you can. There are lots of amazing people on this site to answer questions give you support.

Wishing you the best. Linda

[Wut2do]

Hi nep420_I'm new in the community too,In the 1st week, I'm not used to the proper way to help people, so please excuse me if I'm out of line, ok? This is a time to learn good coping skills and strategies for yourself. If you can, jot down every good strength that you have. Write as much as you can, then think about what you said- walk away, and as you think of something else to say about yourself (only strengths, please), jot it down. Don't try to analyze your writing in the beginning, just focus on writing everything you like about yourself instead. Next week, read what you had to say, and listen to what you've written.

Fear is a miserable foe. So remember it will only consume you if you let it. You're going to learn many helpful ways to face your fears. No matter what ailment is uncovered, you will still need to get through it. You'll still have to face a fear. Do I make sense to you? I'm not trying to tell you what to think, I'm trying to teach you "how" to think- so you can see that you really are smart, you really can face obstacles, you really can face your fears, To me. I've had MS for many years- and I have such fears too. I think fear never leaves us. I think I talk to much. And I'm falling asleep. Best wishes to you nep. Sincerely, What2do is signing off now.

[Midgey_Midge06 in reply to Wut2do]

Good advice 👍🏻

[erash]

Welcome! I concur with all above. Acceptance can be like a roller coaster since symptoms can vary from day to day, month to month. I once did a meditation for acceptance and the focus was not on accepting, which can feel like giving up, but on not resisting, which is about adapting. 🌈

[RoyceNewton]

G'day again nep420, I wrote you a long reply but I lost it, sorry. in the newly diagnosed section there is Royces guide for newbies. It is short but I hope it gives you a start,

Cannabis liquid is good, lots of CBD not much THC I found most beneficial. Very good move on the second opinion. Read the guide and ask for guidance if you would like it.

Online is a much safer place to ask questions, than support groups.

Remember, wear some protective underwear in public. research your Disease Modifying Therapy options and it is ok to have a good cry. There is no cure today maybe next week, beware of charlatans who want to take your money for a cure.

Royce

[Midgey_Midge06 in reply to RoyceNewton]

Oh yes! If someone tries to tell u they have a cure they r full of hooey. Happened to me once. I was so mad

[BobIah]

MS is a hard pill to swallow.

As someone stated, my ms is not your ms.

I put my head in the sand and did not seek understanding until much later. It's great t see your seeking help and understanding now.

I hope you continue. Don't believe w every bad thing you see on the Internet. Talk to your doctor and local MS Society.

[bxrmom]

Welcome to this wonderful group nep420_ I'm Jessie, and I was dx 12 years ago. I was in shock after my dx as I didn't know what it was..never heard of it before. After about 6 months after the dx, I got a 2nd opinion and she confirmed the dx as well. I started on Copaxone daily for 9 years and then the 3xs a week for 2 years. After running out of places that I could do my injections and growing tired of doing them I talked to my neuro about switching to Tecfidera. I have not been on that for almost a year and a half and doing well on it. I just had blood work and an MRI done last month and everything is good, no new lesions or activity.

Have you started on a dmt yet? If so, which one? Look forward to getting to know you.

Jessie

[Midgey_Midge06]

U found a great place to come and find support and caring and a place to vent with no judgment. Its a very safe place.

I look forward to getting to know u 😁💜

[lbenmaor]

Welcome to out wonderful group. This is a great way to gather info. and ask ?s.

It's hard to accept but it makes you a stronger person.

Leslie

[Fancy1959]

Nep420, it's Fancy1959. Don't feel that you are the only person who ever had a rough time accepting your diagnosis. You are experiencing phases or moods we have all gone through when we first get our diagnosis that we have MS. We start with disbelief, then we go to anger, and finally we morn because we have just found out that we are living with a monster. Now what varies for each and every one of us is our time frame to go through each phase or to experience each mood but pretty much we all have to accept the unacceptable. I recently did a pretty long post on moods and you might take time to read it the next week or two because it might help Enlighten you to what you're feeling and will hopefully allow you to understand what's happening to you. I'm sorry you had to experience this and are now fighting our common foe but I am glad you have found us. We promised here to give you a safe place to come and ask questions, voice concerns, and simply speak to others who truly understand what you're going through. By sharing our common experiences I hope we can Enlighten the experiences you are confused by right now. We are not doctors here but we can help you to understand the disease you are now fighting and perhaps allow you to go into your doctor's / neurologist appointment more educated and with strategies to do so successfully. I can't wait to get to know you better because I'm certain there is much we can learn from each other. Until we speak again please take care and remember together we are stronger! Fancy.

[mrsmike9]

Meds: If the first one isn't for you, keep trying! I had to try 3 before I got one with no bad side effects. So don't give up and feel free to tell your doctor if something isn't working.

[vicarder]

Welcome! This is a great place for support. I was diagnosed a year ago, but have had MS for 5 years before that. Just know that it will take some time to accept that you have this illness.