I'm getting scared by reading these posts...

[jbell2435]

I am so new to this dx, and came here to get information which I have that is very useful, but also reading some of the posts are scaring me to death...

MS Hug, severe pain, symptoms I never even dreamed of or have read about so far...

My question is if there is a difference in symptoms from those with progressive on no DMD's vs. those with flares and/or on DMD's?

I am so sorry for those suffering more than I, but I also don't want to be worried about a symptom I may not get. Or maybe I need to be prepared either way?

I was orig dx with PPMS on 9/16/11, then possible RRMS/SPMS on 10/5 due to some past sx....

Thank you for any insight you can give... Signed Confused

And big hugs and positive thoughts to those suffering.

[SNOOPY]

My question is if there is a difference in symptoms from those with progressive on no DMD's vs. those with flares and/or on DMD's?

Each of us will experience this disease and it's symptoms differently. The symptoms of MS are numerous and varied. Some of those symptoms you will have and some you will not. What 'type' of MS you have or using/not using a DMD has no bearing on the symptoms you may or may not have or experience. Our symptoms have to do with the damage done by MS to the Central Nervous System (CNS).

also reading some of the posts are scaring me to death

Getting diagnosed and learning about the disease can be scary and overwhelming

[BigA]

Jbell

welcome, and I mean that sincerely. It's a club we don't want to join, but you're here.

It takes some time. Read, read and read. At the same time, be careful what you read. Everyone is different, some people have improvements, even those with progressive disease. When it's too much, take a break. Check out some other sites too. This one can be overwhelming sometimes.

Also, make sure of your diagnosis. It's so hard to tell at the beginning. There was someone on here who was diagnosed as PP and then it was revised to RR.

Rest - a lot.

Good Luck

[jbell2435]

Thank you for the input! I feel like I'm being selfish and that is just not me.

My brain wants to find something logical about this and it can't!

Any correlation to the size or location of the lesions on the brain to symptoms??

Sorry, but I just want this to make sense....

[dlb61]

I started using this site around the time of my diagnoses in 2007. I hung out for a while, then it just got to be too much information. I had concerns for myself and the power of suggestion.

I felt I'd gained enough info, backed off for quite a while. I recently started coming back. Mostly to get myself a little more updated on meds and such.

I'm not much worse than I was in 2007. Will probably hang around a while and back off again when I feel I've reached the saturation point.

[Windwalker]

Hi,

I can tell you that I am textbook PPMS. Never took DMD's.

I have never experienced the "MS Hug", tingling, numbness or sensitivity to touch. No real vision related issues. I relate these type of symptoms to RRMS.

But as we all know, it can be different in each case. I think, however, that certain symptoms are associated more with RRMS than PPMS/SPMS.

[SNOOPY]

I think, however, that certain symptoms are associated more with RRMS than PPMS/SPMS.

What symptoms would that be?

MS does not distingish between the different "types" of MS and say "oh, well, this body has PPMS so we (CNS) will only give those with PPMS these symptoms and this body has RRMS so we (CNS) will only have RRMS people deal with these symptoms.

Sorry, doesn't work that way.

[Hawkgirl]

When I was first dx'd in 1996, the doctor told me that MS does not cause pain, and that I had "benign" MS. Even though the reason I went to the doctor and had an MRI was because my right arm and leg were paralyzed and my right eye was blind. But those things had resolved by the time I saw the neuro (you know how long it can take to get in to see a neuro), and this neuro confidently told me I had a mild case of MS, that the MS disease did not cause pain, and I should just not think about it.

OMG, what a quack. This all happened at a transition time in my life, so I moved away from where I was, and at the new place I lived, I was having new symptoms every day. Numb streaks, pins and needles in my hands and feet, blurred or darkened vision, and on and on. So much for "benign" MS.

And unfortunately the MS hug is the most painful thing I've ever endured, and I'm including labor and giving birth in that. It is excruciating. I truly hope you don't get this symptom.

Nobody's MS is alike. Everybody's is different. Be sure and read up a lot on the web and get information, because the advice from doc 1 to "just not think about it" meant that I had no idea what was happening to me or what I should do about it. Getting information is the best thing you can do!

[sich59]

I'm going to echo everything you've heard here. I'm PPMS and have never experienced anything other than the foot drop and significant weakness/loss of control in my leg.

No pain, no hugs, no UTI, no optical neuritis.....nothing but this.

If you spend a lot of time here and other areas of the message board you are going to see a lot of heavy stuff and it can be discouraging and depressing as hell. All I can recommend is take it at face value.

Your journey is going to be unique to you. Do what you can to improve your situation or keep it stable and use this board for support. But don't assume anything.

[hunterd]

first of all, MS TREATS EVERYONE DIFFERENTLY!!!! i might be confined to a wc, but i have no hug, no pain, no on. the ppl this site will give you support, as much as you want and need. also, you will get honest awnsers to questions you have. but remember, what happens to one doesn`t happen to everyone! good luck.

[jbell2435]

I'm going to echo everything you've heard here. I'm PPMS and have never experienced anything other than the foot drop and significant weakness/loss of control in my leg.

Thanks, this is what I need to hear or even if it was to be worse, I just wanted to know.

I have the same symptoms, foot drop, weakness/loss of control in the right leg, imbalance, sometimes numbness/tingling in both feet/hands, but no pain.

I have the added bonus of the right leg being over 1" shorter than the left so that wreaks havoc on my back and I'm sure the walking is not helping here either.

[sich59]

jbell2435

Good grief! The back would push me over the edge! Whenever I tweak my back it goes right to my leg, which mean it wants fold up like a chair. I can't imagine what that must be like. On second thought, I really don't want to

I've never experienced numbness but do get tingling from time to time. Nothing in the hands - ever. The leg does twitch quite a bit from time to time, especially at night in bed.

Are you doing anything for meds?

[jbell2435]

@sich59

jbell2435
I've never experienced numbness but do get tingling from time to time. Nothing in the hands - ever. The leg does twitch quite a bit from time to time, especially at night in bed.

Are you doing anything for meds?

Does the twitching at night feel like restless leg syndrom? I get that once in a while too. The numbness just feels like my hands and/or feet/legs are falling asleep even if they've only been still for a few minutes, that one just started up.

My dx is PPMS, so they only put me on Ampyra. I take daily vitamins, especially the D and B12, then I usually take a shot of 5-hour energy in the afternoon to help with fatigue.

[Thinkimjob]

Why did they say PPMS? Why not SPMS or RRMS? Then you can dmds, which are supposed to work, a bit.
You'll find all sorts of MSers at the message boards. No one really knows what will happen, which is part of the nastiness of MS.
Don't worry too much. It will be what it's going to be. Expecting the worst only takes energy you'll need should it happen.
Expecting the best only leads to disappointment in the end.
Buddhists (I'm not one) say "happy is the man with neither hope nor fear".
It's good advice, but it's kind of the opposite of dealing with MS.
All the best.

[jbell2435]

Why did they say PPMS? Why not SPMS or RRMS? Then you can dmds, which are supposed to work, a bit.
Don't worry too much. It will be what it's going to be. Expecting the worst only takes energy you'll need should it happen.

I guess they thought PPMS because I don't really recall having a "flare" or episode to qualify, but just gradual weakness of the leg, foot drop, fatigue, imbalance, bladder, etc. I had mild vertigo in 2004, but nothing major, lasted about a year on and off, then weak leg/hip in 2009, again not so sudden as gradual, then foot drop and fatigue in 2010.

Thanks for the wise words, I kinda had a melt down last week when I originally posted and I think I'm OK to read some of this and no I can't predict what will happen, just trying to understand the confusion of it all!