Recently diagnosed and scared

[Mauizturtlz]

After first major MS symptoms in January, 2013, I was misdiagnosed with strokes, MG, sarcoidosis and metastatic cancer. In February, 2014, I was given the MS diagnosis. At first, it was "good news" compared to the cancer diagnosis. Then I was in denial and hoping it was just another misdiagnosis and I had something with a better prognosis. Unfortunately, my symptoms have worsened and I'm beginning to face reality. I am a 55 year old divorced mother with two adult daughters. I have been in a relationship for 2 years but worry he won't stay committed if things get too hard. I also worry about becoming disabled and being a burden to my daughters. The unknown is so scary.

I have always been active with hiking, swimming, SCUBA diving, traveling, tennis, etc..... I'm finding that my strength and endurance are decreasing. I have been on Copaxone for 3 months. I feel like my brain fog has improved except for a recent relapse.

Does this disease progress even while on Copaxone?

Cheryl
🐢🐢🐢

[tortis]

Hi and Welcome, although I wish it was for a different reason.
No one can tell you how fast or even if you will progress not even the Doctors, but just try to live healthy and hope for the best. Look around all the forum's and you will find a ton of good people here. New treatments coming all the time so there is hope. You will find people with many different or no symptoms at all.
PEACE

Tortis

[Mauizturtlz]

Thanks for the reply...

It helps knowing I'm not as alone as I feel

[tracibk]

Hi and welcome! Definitely check out the copaxone forum.....lots of good advice from people who on it. All DMT are suppose to slow down the progression but there is nothing to stop it. If copaxone is not working for you, you can always change. I was on Rebif for about 9 yrs or so and started Tecfidera about 7 mths ago. Best of luck!!

[AriD]

Hi so sorry to hear of your diagnosis. It is very scary. It so hard not knowing what the future will hold. As others said try to eat we'll get rest take your meds. Do all you can to optimize your life. Take care and hope relapses stay away.

[Alicious]

You can progress on Copaxone, although many people do very well on it. There are also more effective meds on the market. They often come with a more intense safety profile, which is why they aren't always given as the first med.

I'd suggest discussing your concerns with your neuro at your next appointment, as well as the how/why of selecting Copaxone for you if you are concerned.

I totally get that new diagnosis/what does the future hold fear. YOu find a new normal, and it gets better.

[Don2480]

It has been awhile for me but I remember what you are going through...I think most of us have been there. Copaxone is a standard first line treatment. I was on Copaxone and it does take time for it to be at peak efficiency. With that said it would be a red flag if you have frequent relapses..

I have been on the three major types of medications and all of them have pros and cons. They all also have different clinical trial data in terms of efficiency and effectiveness. I do believe that all of them are more or less effective based on the individual. Only time, body(you), and MRI's determine the right treatment.

My best advice is to enjoy the moments that make you forget. Also try not to worry about possible future symptoms. I found out that makes anxiety go through the roof

[Mauizturtlz]

Thx

Thanks to you all for the encouragement. I know being anxious can make things worse and I try to be optimistic.

Is it normal to have RRMS and always have the MS symptoms? My symptoms are always there but sometimes they are much worse for anywhere from a few days to a few weeks? (My symptoms are double vision, foggy brain, loss of hearing, tinnitus, leg cramps, burning sensation, stabbing pains, pin pricks, dizziness, vertigo, weakness, confusion...)

Just wondering if I may have PPMS. So newly diagnosed and have so many questions.

Your knowledge/experience is so appreciated... 😊

Cheryl
🐢🐢🐢

[SNOOPY]

Hello Mauizturtlz and welcome to MSWorld.

Is it normal to have RRMS and always have the MS symptoms?

Yes.

The only thing "remission" means in MS is you are not doing as bad as you were when in an exacerbation(relapse, attack, flare-up).

Remissions can be complete (no symptoms) or partial (symptoms come and go and/or residual (permanent) symptoms. Partial is the most common. Dealing with symptoms is common for many with MS regardless if you use a MS treatment or not.

It can take time for the Central Nervous System(CNS) to calm down, so it is possible to see improvement with MS and it's symptoms even after 2 years or more.

I'm finding that my strength and endurance are decreasing.

Please speck to your Neurologist about Physical Therapy(PT) and exercise. With MS you will need to take it slow and build up very slowly.

It is possible, for some, to increase their stamina and endurance but it can be a slow and frustrating process.

Best wishes!

[Don2480]

I was dxed in 2004. since being dxed I have got my first symptom free remission for a couple months this year. The good news is that getting MS now is more optimistic than it had been many years ago before dmds and all the research.

[Mauizturtlz]

I have a new MRI on Monday so I'm hoping to have more answers then.

Thanks so much for the replies and info. Nice to have people to "chat" with who "get it". 😊

Cheryl
🐢🐢🐢

[AriD]

Since my diagnosis in 1995 my left leg weakness, balance difficulty, tinnitus, and hearing loss are always with me. They get worse sometimes and other symptoms have come and gone or become constant. Things get worse when I'm more tired or stressed. Everyday can be different without it being considered a relapse or progression. It's very confusing and disheartening. Hopefully things will settle down for you and some or all symptoms will dissipate.

[Mauizturtlz]

Thx

Thanks for sharing. I know MS can be so confusing and unpredictable. That's why I'm so greatful for this website. ❤️❤️❤️