Multiple Sclerosis Community

Hi Nicole

This is long so I would read it in segments(sorry) Rory

The first thing you have to do is gather up your medical records from those ER visits including the MRI and find a neuro who specialises in MS care.

This may be hard to do without insurance but there are usually some local community programs that can help, contact your local MS chapter and the should be able to help you get in touch with any available aid.

Yes sorry to say there are still hard and sad cases of MS out there but the good news it that in this day and age the are in the minority . Most of us with the use of modern medication live perfectly normal day to day lives.

One of the reasons to find a competent neuro is that all this will be explained to you by medical professionals, I am not trying to knock ER doctors but the do not have the time to explain all the facts of a diagnoses.

Now to try and answer those questions

Yes go on with your live

You and all of us should enjoy our families all the time but we cann't let MS dictate our choices for us , so my answer is no but it is up to you in the end . You are the only one who knows what is right for you.

Hopefully never the majority of those who reach this stage were diagnosed before the era of what we call the disease modifying therapies. I will get back to you on those or hopefully someone else will as this is too long allready.

Yes there are meds to help nearly all symptoms . You can start with gabapentin for that numbness and tinglining . It is caused by inflamation effecting a nerve in the temple and face called something like the trigeminal nerve and this med should reduce the sensations.

For now go to your PC and explain whats going on he/she should
be able to write a script for the meds you need and may be able to recommend a neuro.

Keep a symptom log ,what brings them on, how long the last and what eases them.

You have to watch for depression and anxiety because as you have allready seen it causes bias in doctors and sorry to say in this so called enlightened age nearly exclusively towards women.

Anyway sorry so long but I hope it helps

Rory

Hey Nicole,

Don't you dare give up on your dreams just because of this diagnosis. I was diagnosed just a week after my 18th birthday, had the spinal tap on my 18th birthday, and I have wanted to be a nurse/doctor since I was 4! I work with the MS society ohio buckeye chapter in many of the fundraisers and do hours of research per week on the subject. My aunt and cousin both had MS and both lived fulfilling lives despite lack of treatments. My doctor is with OSU here in ohio (sorry, I don't know where you're from) and he is constantly educating me on new meds/treatments. Have you ever heard that laughter is the best medicine? I am an LPN, currently work in a hospital, and have had home health clients with MS. I can tell you from experience that it's all in the person's attitude. I have been on 3 different meds now because for whatever reason they stop working since my body builds up the immunity against them, but for the time they are working it has been amazing. I am truely sorry, but just know that with the medications and treatments that are out now most people are not wheelchair bound at all. Everyone is effected differently with the MS, but just know that the resources are out there and there is soo much hope with the new meds coming out soon!!! My aunt had no medications for years and still wasn't wheelchair bound, only used a cane. MS usually effects men worse (I believe, again, that it is due to their outlook). If there's anything I can help you with please don't hesitate to ask, I love talking/educating on the subject. I think that we can all help each other through it! Good luck on the teaching career, I know you can do it

Hello Nicole,

Rory gave you some excellent advice. Kind of a long winded fellow isn't he?!

Dave

Hi Nicole...my heart goes out to you! I want to encourage you! You are early in your diagnosis. It seems overwhelming right now. But trust me..odds a re very good that in time you will not think about the disease everyday. Don't quit school! Don't give up on your dreams! Don't GIVE up! I have had the disease since 1994. I remember how I felt when I got the diagnosis. Scared. I had to grieve, and have a little bit of a pity party and then pick myself up and LIVE. Don't listen to or read the scariest stories (there are plenty) focus on what you have positive going in your life. Surround yourself with friends that are faithful and encouraging...none of know the future. If you can get on a good med (I took copaxone)...it won't take care of the symptoms but it can shortened the length of attacks and lessen the number of them. Get yourself a doctor you feel very comfortable with and trust. (neurologist) there is lots of good information out there on the nmss

I am sorry..I hit the post before I was ready! Anyway..the national MS society and the national MS association are very good resources. I hope you are doing better! My thought are with you.