Please Help having hard time

[sharlykay]

I'm 27 and terrified out of my mind. I was dx in Nov 11 at first it started with a little tingle that didn't go away on my face. I being paranoid went to the dr. and who said worse case it could be ms or a brain tumor and sent me home that was on a friday. so monday I called and requested an mri to help myself feel better. I then got a call that it was abnormal with 3 lesions none of them were inactive. I went to the specialist which did one of my spine and a LP spine came back clear and LP came back positive. well looking back I have had constant fatigue for about 3 years....I also noticed awhile ago that at time my leg would feel off and weak. I didn't think much of it. I don't ever remember having a flair of symptoms and I have noticed that my leg is now constantly tight and at times weak looking back I don't ever remember if my symtoms ever remitted because they were so mild. I am so scared the only person I knew that had ms had ppms and passed away right before I was dx and had had it for about 10 years. My family just doesn't understand I cry ever single day I have a 10 year old daughter for whom I am the only care taker. Then I got online to research it and there was a study that said that they found that obands found in ppms indicated a worse prognosis. This totally sent me over the edge because I had read before that unlike RRMS obands didn't really affect prognosis but this study said that diagnosis under 30 and obands were not favorable...? Did any of you have obands? Anyone dx under 30? Please help I'm sooooo scared. My little girl is talking about when she grows up all this stuff were going to do and it is breaking my heart....

[JerryD]

Please calm down. Worrying and stress related stuff will only exacerbate this situation.
I was dx'd PPMS about 3 years ago at the age of 51. I was told by a 'big time' neurologist from Philadelphia that this was a 40 year disease. So, I figure I will ride this puppy out and try my 'darnedest' to outlive it.

Before you buy into everything your doctors tell you, you need to get educated on this ' freaking mystery' disease. Your first clue that your PCP is not 'God' is that he/she didn't prescribe an MRI right off. Then I bet he didn't do a vitamin D blood test. You need these things. Your medical team must treat you and MS like a science project. Do you know what the blood work lab test form looks like? There is a line/slot for vitamin D. You need to know your ng/mL levels.
Another thing your team will probably not know about is LDN. Low dose Naltrexone. Look it up here and elsewhere on the web.

It did wonders for my sleep deprivation.
I wish you well. We, on this site, are here for you to confer with. Be well, and good luck

[knuckle]

JerryD is right, calm down.

You've caught the disease early.

I would do this:

Immediately clean-up your diet. Get super healthy. Exercise, lose weight, etc. Read the nutrition information on MS world.

I've posted many times on recommended supplements so go to my profile and start educating yourself.

And learn more about LDN. See the sticky on the Medications Forum and visit www.LDNaware.org

Try all this for 6-9 months and see how you feel. You're not alone.

[BigA]

sharlykay

Were you diagnosed PPMS or RRMS by your doctor?

In any case, you need to treat your anxiety. It's not all over, but the way you appear to be feeling will make it seem so.

[KyleW]

As others have said you need more information. Without real info your mind will fill up with worst case scenarios. Not good or helpful.

You will start to get this information by seeing a neurologist that specializes in MS, not a primary care physician and not a general neurologist. Don't assume you have PPMS. Only a very small % of us with MS have PPMS.

Keep us posted.

Kyle

[AnneLouise]

JerryD and knuckle have very good advice. Follow it.

Doctors don't know it all, and you may have to educate them as well as yourself.

Along with a neuro, find a good nutritionist. This is YOUR body, YOUR life, YOUR disease. Be in charge.

Importantly, you must tell your daughter. Don't hide anything from her, you won't be doing her any favors. Put on a brave face and she'll be brave. Kids are remarkable.

Remember, life on Earth is NOT meant to be fair. This includes everyone. Your REACTION to it is what counts.

You will be okay.

[eileenmary]

I recommend you contact your Local MS chapter for help with Newly diagnosed information and a local Support group. If your in an urban area chances are good their's a group for young people.
I also recomment you contact either your PRimary doctor or Neuro to help with your anxiety and Stay off the Internet until you get a better handle on you and your diagnosis.

I've had PPMS for 20 years starting age 33 with a 16 yr old.

[muse_7]

My dad has had PPMS since the late 1980's and he is still going. I have PPMS and I am doing better this year than last year. Relax, if any disease has no absolutes, it is MS. Diet, excercise, and stress reduction techniques will go a long way to reducing the severity of your progression. Honest

[Nebbykoo]

It's not easy, but you can do this.
Fight it. Don't give up or give in.
Be the best you can.
Get and stay in good health. Break your bad habits. Seek counciling.
The mistake I made was to pretend it wasn't happening. Dont' do this. Accept it and fight!
I truly wish you the best...

[BigA]

I always ask for their symptoms.

People are often under the impression that if you are RRMS, then you resolve and go back to normal. The simplistic graphs the MS Society puts out do a lot to perpetuate this shocking bit of misinformation.

Most people I know with RRMS, myself included have residual damage from an exacerbation. Rarely does someone go back to 100% "normal".

Add some anxiety and you get someone with blurred vision, balance issues or even numbness which didn't go away after a month and they reckon they are progressive and come to this forum.

I'm RR, so I don't know - but from my reading of this forum, you know when you are progressive, independent of what your doctor says or does not say.

[palmtree]

I wish I could tell you 100% that you are not progressive, but I am not an expert. Just from my own experience and reading these forums, my guess is that you are RRMS or maybe not even MS. My first year went like a downward spiral so I was diagnosed by a neuro to be Secondary Progressive. I started Tysabri and 2 years later NO NEW PLAQUES not even a tiny one.

There is so much more we are learning about the disease and so much more you have to find out about your own. I'm not going to tell you to relax. It's not that easy, I know. You have a lot of responsibility and something like this is very scary. But from the information you have now, you could very easily have a mild course of RRMS and a wonderful life ahead. I wish you all the best and keep us posted. We care.

[DMG]

I am so sorry for your diagnoses. I know there is nothing I can say that'll really help. Anything I say is only based on my experience.......everyone is different.

While it can be very helpful the internet can be really really scary. There is a lot of great info about MS but there are also the horror stories, the less common cases. It's some pretty tough stuff when newly diagnosed, well always but you know what I mean.

When I was diagnosed I was 37. My son was 3 weeks old and was in his carseat on the neuro exam room floor. We had been to one of his 1st checkups. That day was definately at both ends of the emotional rollercoaster .

Things are workin out and that was in 2003. It'll be ok and you will still be there for and with your daughter. Try and take a deep breath and give your daughter a great big hug, weather she wants one or not . Soak it up because they grow up soooooo fast.

My daughter, son, wife, and 2 German Shepherds have been such an inspiration to/for me. Your daughter will be for you to. You take care and I pray the best for you and your daughter.

David

[Boognish]

I hate to do this but this is the trouble I am facing. I am terrified. http://msworld.org/forum/showthread.php?t=117539

Most of my body is numb/itchy/painfull now. I was dx at 27.

[Cat Mom]

I cannot offer you any better advice than the previous posters but lots of us are doing way better with the disease than when first diagnosed. The Internet is a dangerous place to find information if you're not ready for it. I don't know if you have anyone that can "filter" the info for you. Like only sharing what you absolutely need to know.

Please contact your local Chapter of the MS Society. Even if it's too far away to get to in person, they are just loaded with great info and resources. When I attended the Newly Diagnosed Series in 2005 I remember that was what made me know I can live with disease, not just exist with it.

They had a little book called "My Mommy has MS". Although my own kids were too old to benefit from it, I do remember reading it and thinking what a perfect way to explain it to a young child (or a grown man.. sorry guys... lol). It is literally a children's story book and uses the example of calling Grandma on the phone to explain it.

I do urge you to tell your daughter, she doesn't need all the scary details, just that mommy is sick. I personally believe that it is less scary for her than wondering and making up her own conclusions, especially if steroids and needles come into play. I have had MS since 2005, I have 2 daughters (20 and 25), 1 son (22) and 3 step sons (16, 17 and 19). They have seen me in every state from blind and bedridden at the start to currently, doing quite well thanks to COpaxone, although the left eye is permanently blind. They all know what's wrong and have from the beginning. We can even laugh about it sometimes. Like when they ask for something and I say, "I'll see"... I hear lots of "good one mom, you'll see, yeah right". That's nothing compared to the humour that my fatigue brings!

Please don't think I'm downplaying your fright and worry, I just wanted to let you know you're in good company here. I hope you feel free to post whatever is on your mind. I can honestly say I have learned more here than anywhere. I think you'll find the same.

Keep cool!
Jen

[RollingStone]

Shhhhh! Calm Yourself Down

[QUOTE=sharlykay;1366830]I'm 27 and terrified out of my mind. I was dx in Nov 11 at first it started with a little tingle that didn't go away on my face. I being paranoid went to the dr. and who said worse case it could be ms or a brain tumor and sent me home that was on a friday. so monday I called and requested an mri to help myself feel better. I then got a call that it was abnormal with 3 lesions none of them were inactive. I went to the specialist which did one of my spine and a LP spine came back clear and LP came back positive. well looking back I have had constant fatigue for about 3 years....I also noticed awhile ago that at time my leg would feel off and weak. I didn't think much of it. I don't ever remember having a flair of symptoms and I have noticed that my leg is now constantly tight and at times weak looking back I don't ever remember if my symtoms ever remitted because they were so mild. I am so scared the only person I knew that had ms had ppms and passed away right before I was dx and had had it for about 10 years. My family just doesn't understand I cry ever single day I have a 10 year old daughter for whom I am the only care taker. Then I got online to research it and there was a study that said that they found that obands found in ppms indicated a worse prognosis. This totally sent me over the edge because I had read before that unlike RRMS obands didn't really affect prognosis but this study said that diagnosis under 30 and obands were not favorable...? Did any of you have obands? Anyone dx under 30? Please help I'm sooooo scared. My little girl is talking about when she grows up all this stuff were going to do and it is breaking my heart....

It's perfectly normal to be scared, but you already know that you cannot let fear rule your life, espesicially in front of your children. Please don't give into self diagnosis, stay informed and remain your own best advocate. no one cares about you more than you do. It was 03 when diagnosed with PPMS and had three young children at the time. As they grow older they understand better and are even very helpful in many ways. We still talk about the things we plan on doing and if it falls on a bad day, we reschedule.

I think the best advice I can give you is to find a physciatrist, someone you can relate to and can prescribe medications to help you control your emotions. Because believe me, just when you think you've got a handle on it, something else pops up (and don't worry about that either). You are truly stronger than you can imagine. When I was first told that same thing I thought "what a crock," but it's true. I think God built that in as a self defense mechanism.

So, here I am, 10 years later riding motorcycles and tickets for Aerosmith in my pocket. You are not alone luv. This site proves that. And don't stop here, make some new friends by attending some group meetings and anything else that feels right to you. Do it for those you love most and sometimes you will meet someone and say what they needed to hear at that moment. Peace!