Looking for others with MS

[chmagu76]

    I was diagnosed with MS late this past April and to say the least it has been a bumpy road.  I woke up one Saturday and my right leg wasn't working all that well.  It felt asleep without the pins and needles feeling that one usually gets when something falls asleep.  I couldn't lift my leg, I couldn't drive or walk and trying to climb stairs was extremely difficult.  I was told by my doctor to get my butt to the emergency room (I think she thought I was having a stroke) where I had just about every test performed on me.  Now I take an injection every other day to try and keep things in check.  They gave me steroid infusions for three days to get my leg as normal as possible.  I don't have to use the cane much anymore but I still have issues climbing stairs and more issues with my balance.  Sometimes I must look drunk.  My neurologist told me there was a good chance my leg would never fully recover from the incident and he was right.  
    I'm getting used to the fact that my leg is the way it is and I can except the weirdness that goes on with my eyes and the dozens of other strange things that no one else seems to experience.  What I am having problems dealing with, is the pain.  It started years ago.  A sharp pain here for no apparent reason and another one there, the buring sensations, the odd tingling, the feeling of hot and cold spots, electric like shooting pains........the more time passes the worse and more frequent they become.  The past few weeks it has been pretty much constant and it makes me very grouchy.  The embarrassing part is the twitches, especially when I am trying to relax.  God forbid I'm holding a cup of coffee or something because I'll be wearing it!  I must look like I have turrets syndrome sometimes.  Every year these "symptoms" get a little worse.  
     Like I said above, I have only known about my having MS for about 6 months now.  Before that I was lead to believe it was all in my head (no pun intended) and that maybe I should take a vacation and relax.  I just want to know if there is anyone going through something similiar.  Even if you're not it would be nice to chat with people who have to live with this disease.  Thanks for reading and I look forward to reading your stories and replies.
Christina

[chmagu76]

That was a good idea about posting my story in the journal.  That way when another -me- comes around it will be there.  I will have to check those out to see who has a story to read.  I have to admit that I feel kind of funny about reading someones journal even if they are for everyone to see.  Maybe I'll do mine after this.  

As far as the cane thing goes. *Sigh*  :)  I did use it a lot when I couldn't use my leg.  Now it would be more for balance.  Not tipping over and looking intoxicated and such.  I go back and forth on the whole idea.  Do I want to feel stupid in public or do I want to feel stupid in public.  Use a cane or look buzzed.  Hmmmmm?  lol.  For now I can handle looking like I had one too many.  

Thanks for the info sho and take care of yourself!
Christina

[shoshin]

Your first post, asking for stories, reminded me of something I had been meaning to do for a while. Some time ago, there was a thread suggesting people put their stories in their first journal entry so they're findable. I thought it was a good idea, but never did it. Anyway, I finally got it together and made a post up until the point I got dx'd last fall (only took me six years and three neuros). I'm going to do the post-dx stuff later, but I've run out of steam for the moment.

Not sure anyone else is going to be interested in this, but at least I have it all a little more organized for my own benefit.

Anyway, welcome to our group, which I've found a great source of support and knowledge.

sho

PS Totally empathize with the too self-conscious to use a cane thing. I just prefer to stagger in zig-zag fashion most of the time, although I'm not sure it's any less conspicuous (at least judging by the number of people who ask me if I've hurt my leg).

[lbradley35]

I used to have cards and stickers that I got from my job (I work at Arkansas Rehabilitation Services - Special Programs - for the disabled) The cards were for people who parked in a handicapped space without a tag or licenses plate. The card said your are illegally parked and your license plate number  has been reported to the police. The sticker said you are illegally parked in a van accessible only parking space and your license plate number has been reported to the police. I just used them as scare tactic, because we all know unless a police officer see's the vehicle they are to busy to try and track them down. It helped at my job those cars never parked in the handicapped spaces again. Here in Arkansas if you park in a handicapped space the fine is $250.00, but if it specifies van accessible only the fine is $500.00.

If I ever come across any more of those cards....I will scan them and post them so others can use them if needed.

Lori

[ShadowsSister]

Hi, I just read your post. I am fairly new to our group, but know that you are in the right place with this support group.
I have had MS for many years. I was diagnosed almost 23 years ago. You are welcomed to check out my journals if you want to.
Sorry I haven't been around much this week, some weeks are better than others, as I am sure you already know.
I just wanted to say "Welcome to Our Group" . I have found so much support since I joined in Sept.
Take care and know that you are not a lone.
Hugs on the winds, from me to you...{{{{~!~}}}} ShadowsSister(DJ)

[chmagu76]

Amen to that!  Lori is right.  We shouldn't have to feel bad or concern ourselves with what we are taking away from other people.  If you have a minute or two you should read what was said about whether or not to use a wheelchair.  I forget off the top of my head who wrote it and I don't want to hit the back button and lose what I am typing but she hit the nail right on the head.  If it improves out quality of life then why not??  I struggle everyday about whether or not I should use my cane because I tend to tip over and fall more often than I like.  Bouncing off of walls or slamming into door jams all because my balance is out of my control.  I can only lift my leg about 6 inches off the ground which can make moving a bit difficult and I think my right hip muscle is disappearing on me.  It kills me that I am more worried about what people will think if they see me with a cane instead of how my my days could be easier with one.  
Take care all of you!
Christina

[lbradley35]

You said, "I feel so different when I park in a handicap spot and I get these looks from the older side like I don't belong in one and some people even laugh and they think I am lying.'

I am 39 years old and was diagnosed at age 25.  I have always had a handicap tag for my car.  It bothers me too when people stare like you are using your grandmothers handicapped tag. When I am approached by rude people, who think you have to always be able to see the disability to have one.....I say things like- If only I had the opportunity to live to be your age, or how would you like to have a disease that damages your but we have to live day by day brain, spine and takes away all the privileges in life that a healthy person has been given. I was told at age 25 I could not have children due to the MS, so I feel like this disease has stolen many things from me in life other than just my health.  There are always going to be people who judge us based on superficial things, but I feel like if they approach me with  their unasked for, unwanted opinion....then I am going to tell them why I park in the handicapped spot and how blessed they are to not have contracted MS.( My comments above are not for people with visible or hidden disabilities, only those who think I'm just  trying to get a closer parking spot.)

I know I sound angry and I don't mean to rant about the parking spots, because I am a really nice person.  I work directly with adults and children of various disabilities & ages and I know how hard it is on them to go somewhere and to see people take parking spots assigned for the disabled.  (especially van accessible parking spots). If I feel good, I park in the regular parking spaces, but sometimes I just can't. Those who have been given good health, families, etc....... just don't know what a blessing they have been given. I've never met a disabled person who chose this path in life, but we all still push on everyday to make the best life out of the life God has given us. Sorry for all the complaining, but you should never feel bad about using your tag.

Lori

[chmagu76]

I heard that plenty of times!  When they did diagnose me 6 months ago I was SOOOOO mad at a lot of doctors.  Not because they didn't catch the MS but because of how they made me feel while they were overlooking something very real.  Crazy.  Like a hypochondriac.  Like I didn't know what I was talking about or I was seeking attention and going about it the wrong way.  I know everyone here knows what I'm talking about.  That's what I like about it so much.  :)  

So, in your experience, you think I may have another lesion?  I know there are dozens up there already so what's one more.  

Thanks for your help....all your help!
Christina

[lookup]

Hello to everyone :)
It is hard to believe that there is so many people with MS I really thought I was the only one,
I feel so different when I park in a handicap spot and I get these looks from the older side like I don't belong in one and some people even laugh and they think I am lying .
I am 32 years old and I have had MS since 1998 I have had my ups and downs but I want to keep going and not let it get me to down.
I use a cane when I am in public I am very unstable when I am out and I dont want to look like I am DRUNK,  
I Have lose my sense of smell and that is going on 2 years it is very to deal with but it is the reality that I have to deal with I hope nobody else has to go through this.

I hope all is doing  well out here
Take care to all :)

[essdipity]

So you too know all about "It's all in your head." That's almost a chorus around here. You'll never find a bunch who understand better what you're talking about.

Your symptoms were not incapacitating till relatively recently, so I guess a lesion developed in an area that really counts. At least you did get a diagnosis, so that's better than if they still were telling you nothing's wrong. What they should have done right after that is tell you how to live with it. Not just about the injections, which are important but do nothing for current symptoms, but about ways to make you feel better as your life progresses.

Possibly you could benefit by working with a knowledgeable physical therapist. And maybe some orthotic device would help with walking and climbing stairs. But for sure you should be trying out meds to make you more comfortable. Sometimes we give up on one because the dose was not high enough to help, or we didn't try it long enough. Sometimes their side effects get in the way, to put it mildly, but there are many alternative meds, so you may have to "shop around." What works for me may not work for you. Your doctor should be active in helping you with this process. If not, shop around for another neuro!

ess

[julia111]

Hi Christina!  

I'm so glad you found this forum and I know you will benefit greatly from knowing the wonderful people here.  This forum is truly the BEST, as you will soon find out!

Sharing your story is SO important because it stresses the importance of receiving an EARLY diagnosis of MS.  

Your diagnosis will empower you to help others on this forum who are still searching for answers.

At the same time you will see that you are not alone and that this is a great place to come for information, but most importantly friendship and support.  

One of the good meds for FATIGUE that Ess might have been referring to is PROVIGIL.

Although it's not right for everyone, there are several of us here that take it for fatigue.   It could make a difference for you if you are having a difficult time doing things you like or need to do.  It's made a huge difference for me!

We look forward to getting to know you!

Best wishes,
Julia

[chmagu76]

The physical problems that I have, have been ongoing for about a decade or so.  They started out small and seemingly insignificant to me.  A sharp pain here and there. Weird sensations every so often.  A trip to the emergency room for my eyesight.  It started to become a regular problem about 2.5 to 3 years ago.  I saw doctors for all these things but a person can only hear, "there is nothing wrong with you" so many times before he or she just gives up and learns to live with it.  Like it's all in your head or something.  If I never woke up that Saturday having no control over my leg I probably still wouldn't know what was going on.  I'll admitt, when the Dr. told me I had MS I was like, "FINALLY!  Now what does that mean exactly?"  I still have a hard time deciphering what are symptoms and what are not. That bad habit I mentioned above has a lot to do with it.  Down playing what is really going on.

I was put on Amantadine for a short time.  I still have no idea what they were supposed to do for me.  I felt no different.  I am on Citalopram now for depression and I was told that it should help with the pain....but it does not.  

If at first you don't succeed.....try, try again.  Right!
You people are great!  
Christina

[essdipity]

Hi, Christina. Me again. I just want to say that 32 is WAY too young to have aches and pains from the aging process. What I think is going on with you is the suddenness of your illness and diagnosis. Most of us take years and years to get to the point where you are, and we've had forever of being told that nothing was wrong, etc., etc. So for most of us the diagnosis is actually welcome and a relief. Youve had the opposite experience, and haven't really had the time for it all to sink in.

But I agree with the others, start being proactive with your doctors about what's going on with you. Don't invent reasons for your symptoms that are not related to MS. It's understandable, but it's not helping you. You've gone from being a very active woman to being someone more or less on the sidelines because of your illness. That's an awkward place to be, but there is help available. No one can promise you that you'll be back to doing all the active things you used to do, but maybe some of them are still possible. There are good meds for pain, fatigue and spasticity. Get some!

If your neuro balks, do find someone else. We all have found that a good MS specialist is by far the best route to go. Good luck!

ess

[chmagu76]

I would like to think I am good shape.  I used to go to the gym everyday and was biking anywhere from 15 to 32 miles per trip 3 or 4 times a week.  Hiking was another favorite of mine.  However with the pain and balance problems I need to find more suitable interests.  Walking short distances now seem like a challenge.  I am actually underweight.  It came off recently and no matter what I do I can't seem to put it back on.  It's kind of weird really.  I was told it's a side affect of the medication.  

My doctor is a regular neurologist but I think it may be time to look for a specialist and ditch my bad habit of going into appointments with ready made excuses for myself.  Unfortunately Lulu, I did say that to my doctor.  I went in there and made everything sound like no big deal and you are right.  He seemed to latch on to that and he kept saying he thought I had a good look on life with MS.  Boy was he wrong.  I don't.  I just didn't want to look like I was confused, emotional and falling apart.  Which I was.  I know I have to do something to make things better for myself and soon.  An easier job, perhaps.  Don't want to jump ahead of myself.  :)  One day at a time, right?

Thanks again and take care,
Christina

[Lulu54]

Dear Christina,
The aging process should not be a factor with you if you are in otherwise good condition - weight, activity level, diet. Please don't even say that out loud to a doctor - if you have alazy one they will latch onto that dx and dismiss everything you say as age.

You know your body best and you know what is normal and what isn't.  Yes, this is a ton of emotional stuff to process.  How did our bodies betray us like this?

My best, Lulu

[sllowe]

Hi again,

I think when a fast diagnosis is followed by starting meds right away for MS, it is very difficult to figure out what is causing what.  This was my experience too.

I simply did not know MS, and specifically my MS enough to distinguish symptoms especially when they are mixed in with drug side affects as well.

I know more now, but it's still difficult at times.  I ended up having to go off of my meds for a short time, and that did help me to sort some things out a bit more.  I hope you call and make that appt. Be careful not to justify your symptoms off to age w/your Dr. You are young, and a good Dr. will be able to find out what is going on.  Unfortunately, it's been my experience that I end up having to figure out these things on my own.  

A MS specialist is the way to go, and I'm just with a regular neuro w/MS patients.  Eventually I am going to line myself up w/a specialist.  Are you w/a specialist or a regular neuro?

I'm glad to hear you are not thinking about changing meds at this time. It does take time for these to begin to work.

ttys,
Shell

[lbradley35]

Welcome to the group! I just recently joined and it has been a life saver for me. I went from feeling alone to feeling like there were alot of other people in my same situation.  This is an awful disease but you can never give up.  Everyone I have talked to about MS can relate....because we all experience similar if not the same problems. Stay positive and keep in touch with the people on the forum.  It is worth it and it has made a big difference in my life in the short time I been a member.

Remember we all in the same boat!

Lori

[chmagu76]

I actually have not made a doctors appointment yet and I canceled the last one.  Like I said above, it has been 6 months since the diagnosis and I think I am still trying to make sense out of the whole thing.  I don't know what to blame on the MS and what is normal aging.  I have been to the doctors many, many times over the years for several different things and we all know it's never just one appointment and each time I was told it was nothing.  Maybe stress.  Deep in the back of my mind I know it's not normal to feel the way I do at 32 but I can't help but think "what if?"  My eyes hurt and blur a lot like they don't focus together like they should but what if I just need glasses?  The more time passes the more pain I'm in but what if it's me just getting older?  I twitch a lot (for lack of a better word) but what if it's......I don't know.....my muscles relaxing or something.  My leg, my balance and coordination, falling and such.  My leg was a given but what if the rest is me being a clutz?  I don't know what is MS and what is just life.  The reason I joined is because I desperately needed and wanted to be in contact with other people who are going through life with MS and to hear...errr...read their stories.  Maybe try and make some sense about what is going on with me by knowing that I am NOT alone.  My aunt is the only other person with MS that I know and her symptoms are different than mine.  I know that not everyones are the same but I can piece together other peoples stories to match what I feel and what I am going through.  As for the medication, the betaseron.  I can't change it yet....lol.  I am just getting used to it.  It's been a few weeks since I have had flu like symptoms because of it.  

Well, I am going to stop here.  I should go get some work done.  :)  Once again, I can't express how lucky I feel to have found this site and people who definitely understand what I am going through.  Thank you, thank you, thank you!!!

Take care of yourselves,
Christina

[Lulu54]

Hi Christina and welcome!  You have found one of the best forums on line and definitely a friendly and helpful group of MS "experts."  Many here are wading through the diagnosis process and others of us have a DX and are on drugs.  I am in the latter group, having been dx'd in September 08, and am on Copaxone (a daily injection).    

I'm thinking there aren't many of us here on betaseron.  Avonex, rebif and copaxone seem to be our drugs of choice! :-).  I'm wondering is it too early to decide if betaseron is or isn't working for you and possibly trying something different? I really don't know the answer to my question, but I'll toss it out there as something to think about if your MS is changing, which is what it sounds like to me.

Also as my friends already pointed out, there are drugs to help with the symptoms and the pain of symptoms. Your doctor should be willing discuss those choices with you.

You ask if anyone is going through something similar ?  The answer is a definite yes, you are not alone.  I hope you will take advantage of this site and visit often for a sympathetic ear, to rant, ask questions or tell a story or two.  It really does help to have company of this crazy journey.


Be well and write soon,  Lulu

[sllowe]

Hi Christina!

Welcome! I'm so glad you are with us!  You really described so much, so well in your post.  I'm so glad to get to know you a little through what you are going through. pain makes me grumpy too - it's horrible.  Though, grumpy is putting it nicely.

I was dx'd last year, and still struggle w/symptoms and issues.  I'll not be able to provide you w/a timeline today, but wanted to say hello, and introduce myself and chat a little.

I remember someone from our group being on the betaseron, but don't remember who.  I do know of others who have done well with it. There is a well know Dr. in NJ who fully believes in it.  I'm on Rebif every other day.

I'm not on anything for pain but the discussion has been brought up.  I take baclofen for spasms.  Others have mentioned lyrica working for their parathesias, and just recently someone mentioned Cymbalta as it's for pain and depression.

I hope others chime in for you too. Feel free to bump this thread up, or re-post addtl. questions, etc.

When are you going to the Dr? Soon? Have you looked at our health pages? There is one in there writting by a pain doc. and so many others I think you will enjoy.

Nice to meet you Christina, see you around,
Shell

[chmagu76]

Thank you for making me feel welcome.  I am on a medication, Betaseron, that I inject every other day.  Fun stuff.  
I will be calling my doctor for an appointment about the pain I am experiencing and I hope I don't get the same response I got in the past.  (Not from him.......from other doctors).  It's getting to the point where it's interfering (and not in a good way) with my day to day living.  Like I said, it makes me very grumpy!  :) I wonder if anyone else here is on medication for the same thing?  Maybe I could get some pointers?

Thanks again!
Christina

[essdipity]

Welcome! You've sure come to the right place. We have many members, diagnosed and otherwise, who experience lots of the things you do. Just look through the posts and you'll see what I mean. Also take a gander at our Health Pages (click on upper right). You'll find that you're far from alone.

I have a couple of questions for you. First, are you on one of the MS disease modifying drugs? Second, has your neuro given you any meds for relief of your painful paresthesias? If your answers are no, you should find out why. There's no reason for you to suffer as you are without at least trying some of the meds.

We've developed quite a lot of good info here, and we're a friendly and sometimes zany bunch. I hope you'll post often as we get to know you and you get to know us.

ess