Friend just found out has MS

[Christy H]

A dear friend of mine has just found out that she has MS. She is 36 and is scared to death that is a death sentence. I told her that together we will get though this. Can anyone help me understand this disease and what can I do to help her get through this.
thanks for all your help !

[inatalia]

Hello Christy, your friend must be happy to have a friend like you. When I was diagnosed MS a few years ago I didn't know what it was and I was not scared at all. (Sorry for my English, I am Russian but live in France). Later when I had found in the internet a lot about MS I was as if lost for some time. I didn't know what to do. Then I decided that everything in our Lord's Hands and calmed myself down. I began to look for the help in the internet. I found out good web pages about right meal, what to do if you suffer a lot. I decided to continue my life as before. I understood that my MS began about 20 years ago due to all the symptoms that I had. Now I continue to play the piano, accordeon, though it is more difficult for me. I enjoy everything that is around me and I looked a lot of interesting things in the internet... Well, 4 months ago MRI showed... that I didn't have new lesions in my brain! I really feel better now. Maybe it is remission period. Who knows. Anyway I again can go out but with my can as I have not good equilibristic ability. Yes, I still have pain, headacke, spasms, tiredness and so on but they are not so strong like before. People tell me that I am full of life and they are happy for me. I still don't have a close friend here to share my happiness, sadness and who knows what it is MS. So Christy or your friend, if you want, write to me  to ***@****
maybe someone else want to write to me. I am not young. Soon I will be 52. Too old? Don't think that I will give up! :-)
Please, Christy, try to destract your friend. If she thinks a lot about MS her central nerves system will be too weak to fight. How it is good to live! Look around. There are so much wonderful things!

I wish you and your friend all the best and good health.
Natalia.

        

[karzme]

I'm glad I could help some. I'm not real sure about MS Society website. I would guess MSSociety.com. Hope you are doing well   Karina

[tory2457]

Sorry to hear about your friend..I too was 30 actually on my 30th birthday I first had tingles and numbness and vertigo..Happy Bday to me :(
anyway, I have been relatively "healthy since then"...so don't think MS is a death sentence! A large majority of us do get through life relatively normal (RRMS)!

I agree read and educate yourself about MS, find a good neuro that you are comfortable with. Remember that MS is a clinical diagnosis! Testing, MRI's Spinal's are still looked at ways to diagnosis MS not the end all. My personal neuro's opinion.

I would also suggest looking into Lyme Disease. I now am treating my MS as an infection, and feeling better. My lesions in both my brain and spinal cord are resolving, I don't have any new lesions, none have enhanced and my tingly numb foot after many many years is almost gone!

Lyme is a tricky disease because there are 2 distinct views on lyme...Most of us are tested conventionally through conventional doctors that use the ELISA which leave most of us testing negative..

The best way to know if lyme is the culprit is to test at a lab that specializes in Lyme Disease, and more importantly find a lyme literate doctor..Like MS, Lyme is also a clinical diagnosis...Lyme docs could very likely talk to you about your very symptoms and say lyme could be the answer.
Sounds funny, but lyme does mimic lots of other diseases.
Places to start:
ilads.org
lymenet.org
There are lots of MS'ers now treating their MS as an infection and also getting better!
Becoming your own advocate: learning as much as you can about MS and Lyme Disease will help you and your friend! I found that helped me when I was scared to death about MS and then I began understanding about Lyme disease. I realized it's my body and my health,,,I needed to take charge and find my answers.
I wish you good health,
tory

[Christy H]

thank you for your support and let us know how you fair my dear.
thank you again!
Christy :o)

[Christy H]

thank you thank you for all the help. I know exactly what it feels like to have people feel sorry for you because I have 2 brain tumors and in February was implanted with a pacemaker for my low heart rate. ( I am only 33years young) does MS society have a website that i can look info up on?
thank you again!
Christy:o)

[karzme]

First off, she has a great friend in you!!! I was diagnosed in May. Found out i could have it in April. Until I read info on it (go to webmd and look up MS. How I got my info. Or call MS Society @ 1-800-344-4867, for info.) I to thought it was a death sentence. Thought I was going to die, without ever been in love. I am more positive now that I have info on it. Gives me a peace of mind and lets me know I have a fighting chance.

From my reading it affects brain and spinal cord. Causes vision problems (mine started with double vision. Had it for 3 months.), memory and ballance problems too. Some days are really good and some days are a challenge. She needs to get on meds as soon as can. Helps slow down disease, but there's no cure.

One thing I'd like to share from my experince, don't feel sorry for her or treat her any different, then before she was diagnosed. I have an Aunt that calls me to much, since being diagnosed. I know she means well, but ALL she wants to talk about is MS and how it's affecting me that day. If I tell her I'm good, she doesn't believe me. This is very iritating. I've tried talking to her repeatedly about it, but she doesn't listen. I told her: I might have MS, but I don't always want to think about it. I'm still the same person I was before I was diagnosed. Your friend will eventually adjust to it. It takes time. Tell her to feel free to join our forum. My advice to you: Just be there for her. Help her if she asks or offer help, without sounding like you feel sorry for her. Sorry if this seems harsh some, Don't mean it to. Just speaking ffrom experience. I'm 33 now and we all know how hard it is to live with it. But having a good friens and support system is essential. Hope this helped.

[Super_sally888]

Hi,
I am 36 and also maybe facing MS (not yet diagnosed, but horrible things happening to my body at the moment).  My story is further down the page.  I am also terrified.  I have had a few crying episodes already.  However, the best thing to do is for you and your friend to read as much as possible about MS.  then you will realise that not everyone has a really bad case, and that it can be manageable.  There is a huge variety on how this affects people.  Stay as positive as you both can and take it as it comes.
Best wishes to you and your friend.
Sally