Looking for advice

[Jahne]

I am 48 years old and have been experiencing symptoms of ms. I have recently been undergoing a series of tests. My dr. thinks I have ms but needs to rule out other possibilities. I have always been active and now I'm very worried about my future. Any advice, questions to ask my dr, things I shoud know, things to expect... thanks.
Jan

[sandythegeek2]

Hi Jan,  I too am hanging in limbo with the possible MS status. I have had some symptoms that started 5 years ago. I didn't talk about weird things that happened to me. I'm 49 and am a single mom of three grown daughters.

I had a lot of migraines so maybe my extensive hyperintense periventricular brain lesions are from those. Although some are large  Don't know yet. I had an LP and it came back normal.

I had a VER and am still waiting on those results.

I'm here if you ever need to talk. I have found everyone here so sweet and very helpful.

Maybe you can let us know more about your symptoms and tests you've had.

Hugs,
Sandy

[HVAC]

You need to talk to someone  especially before a diagnosis. That is actually when we are very vulnerable. The uncertianty is very scary. I could not talk to my husband for my two years of tests.. He was scared and just wanted it to go away. I wish I had know I could contact the NMSS before I was diagnosed. I thought they only helped diagnosed people but they don't. They were my life line when I was first diagnosed and my husband was freaking out. He finally got involved and they have supported both of us. I learned so much which has taken the fear out of MS for me.

Alex

[Jahne]

Thanks to everyone who responded. You have all given me a bit a peace as I go through this long process of dx. It js good to have you al to talk with. I wish you all the best on your individual journeys.
Jan

[Jahne]

Thanks for your response. It's nice to know I have people to talk to. I try not to talk about it too much with my husband, as I don't want to seem negative. And, I haven't told anyone else....it seems premature to talk about it as I don't have dx yet...even though it is all I can think about!  Jan

[HVAC]

You are in a hard place to be. Many of us have been there. The diagnosis process can be scary. Some find out they have MS others do not. I contacted the NMSS. They have lots of free materials about MS. Sounds good your doctor is looking at it. Even if it is MS it is not the end of the world. It can seem like it. No two MS cases are the same. You will not get every symptom of MS. There are lots of treatments these days. I have had MS for 47 years and have a good life. I have had to make many adjustments but I like my life. The unknown is really the worst part. This is a disease of uncertainty. You learn to adjust to whatever comes along. I used to wait for every symptom I read about to happen. Some symptoms I have never had.

I needlessly freaked myself out in the diagnosis process and afterwards projecting all kinds of things on myself. Then I decided to take my life back. I sought out things I always wanted to do like horseback riding and training service dogs.

I go up and down with emotion but I try to distract myself when I get fearful or angry. I try to concentrate on things I can do and adjust when I can't do things I used to.

Alex

[supermum_ms]

Hi and welcome to our little corner of the web, please have a read through our health pages, found just to the right of your screen. There you will find answers to many of your questions, you'll find some on the dx process, common tests, MS mimics etc etc. they are well worth having a read. :o)

The advice i'd like to send your way, is to try not to worry about something that may not even be true. I know its easier said than done but it can take a long time to get dx, because there are numerous mimics, and evidence gathering can take some time. The other thing is that MS is unique to each person, so no one can actually predict what will happen down the road.

People dx today are more often than not, still active and living relatively normal lives, starting families, working, finishing their education because of the disease modifying drugs, life style changes, understanding their needs and making accomodations etc etc. For some their lives are severly affected, which is who people most often think of before they really understand what MS is.

So take a breath, and pace your self, you could end up in limbo for awhile whilst the dr's are working it out whats what. We'll help you stay sane :o)

Cheers........JJ

PS its often quiet over the weekend so you may not get many responses just type 'bump' or add something and it will come back to the top again.  

[Dagun]

Hi Jan, I happy that you have a nice doctor that is doing test to rule out. If you have a time please tell us something about your symptoms so we can understand better what is happening. It is also good to write everything down that has been going on so if he wants to know the details, you will have that ready.

If you then would have MS, it does happen very differently to everyone, you really never know what to expect! Many people with MS just go on with their live, and it does not change it much. So there all kinds of MS. We are of course no doctors here, but there are many helpful people here who could give you devices.
My best,
Dagun