Just DX'd a few ?'s for the experienced

[bbs]

I was dx'd with MS last week. I had a contrast MRI of my spine and brain. I have lesions on both. My neuro will see me again in a month once I have "digested" the news and done my own research. I just have a few questions for those who have had this awhile. I'm a 47 y/o female. What is the MS hug? What is an episode and how do you know you are having one? I still need the blood work done - what do they test that for? Now I feel like a paranoid schizophrenic. I feel something new every five minutes (a pain here, more numbness there...) Since I didn't know I had MS all these years but had so many varying symptoms - how would I know what on earth an attack is? Thanks

[jbell2435]

bbs - I am so with you on this! I am 52 and just dx 2 months ago and had no clue and still don't know if I ever had an 'attack' or if it was just gradual as they suggested.

I know there has been no remission tho, just weakness of the leg getting worse.

I'm not sure what they look for in the blood work, but they try to rule out all kinds of other things.

And yes since my dx, I keep feeling like new things are going on and then it just stops when I don't think about it, thankfully.

I'm sure others can answer better...

[bbs]

Thanks - It's just such a strange condition. I can't wrap my head around it. I just want to understand the attack aspect of it. My right hand is numb and has been for a few years but slowly getting worse. It hasn't gone away not even for a day so I don't understand what having an episode is. It seems that I'm having a permanent one.

[heliotrope]

The blood work is to confirm the diagnosis. There are other diseases with the same symptoms. Some of these can be identified using blood work.

The definition I've heard used for an "attack" (relapse/flare) is a new or worsening symptom that persists for more than 24-48 hrs. I'm sure someone will have a good source for you to read.

[foxz71]

Blood work...they took 16 vials from me in one sitting to rule out MS mimics. I joked with the nurses that they really must be vampires.

I have my blog address in my profile. I am kind of chronicling my experiences if your interested. But MS is different for everyone, so my experiences may not necessarily be yours.

Hugs, diagnosis is both a relief to know the "what" and a scary beginning towards the unknown...

MS World is the best forum i've found for connecting with others.

[bbs]

I suppose the best part of the MS diagnosis is that I'm not crazy. Well... maybe. I have been going to my DR with strange symptoms for years and I was sure he thought I was nuts. He doesn't know yet but I'm making an appt with him to tell him. (he has never insinuated that I was crazy BTW). I just hate needles and don't want any more blood drawn. I've already been testes for lupus and lyme - both negative. Geez - there are a lot of diseases out there I guess.

[BigA]

I was dx'd with MS last week. I had a contrast MRI of my spine and brain. I have lesions on both. My neuro will see me again in a month once I have "digested" the news and done my own research. I just have a few questions for those who have had this awhile. I'm a 47 y/o female. What is the MS hug? What is an episode and how do you know you are having one? I still need the blood work done - what do they test that for? Now I feel like a paranoid schizophrenic. I feel something new every five minutes (a pain here, more numbness there...) Since I didn't know I had MS all these years but had so many varying symptoms - how would I know what on earth an attack is? Thanks

You will lots of strange sensations in the beginning. Pains, burns, itches, twitching, weakness, stiffness, etc.

Much of it may go away with time (within 2 years)
Some of it is here to stay
It will vary by hour, day, month and year

It will take you about 1 year to get used to your new body, so give yourself some time. if you're still physically able, not now, but soon is the time to start exercising and making your body be able to work as best it can.

[WALKINGHORSEWOMAN]

diagnosed 2 years ago

I got my diagnosis 2 years ago. Like another poster said everyone's experience is different but here is what I can tell you.

Bloodwork- they will probably at least check your vitamin D and B levels. I am on supplements now for both since both were low.

MS HUG- mine visits me every evening and sometimes stays all through the night. It comes on as I get more and more tired and won't let go even though I offer it Baclofen. For me the best description is a tightening of the muscles, especially right up under the bra bottom that just will not quit. I can't get a deep breath, it is quite uncomfortable.

A flare is defined as new symptoms, or worsening of existing symptoms for a period of over 24 hours (some definitions add being separated by at least 30 days from previous worsening). Many doctor's will require you to be tested for a UTI before deciding you are having a flare up.

Since the doctor has sent you home to "digest" you will want to gather as much information as you can. Possibly he will be suggesting disease modifying drugs (DMD's). Some people swear by them, other people won't touch them.

You will have a lot of individual, deeply personal decisions to make. Just keep in mind that this is your course, no one else's so what works for me may not work for you and vice versa.