family and employer don't believe i have ms

[chrissinlongisland]

I had lots of weird stuff happen in 2004/2005, muscle spasms, shaking eyes, double vision, and balance issue. All were "come and go" stuff. The eye shaking really freaked me out so i got myself to a neurologist. Had a brain mri and they found some foci, and 1 to 2 lesions in right genu, the neuro wanted to do a lumbar puncture. I freaked out and went for all other testing 1st. I came out positive for vestibular neuropathy/vertigo, but i did well with the cardio doc so the lesions were not from vascular. Determined to get better myself, I quit smoking, exercised regularly, and healthly lost 72 pounds. The symptoms seemed to wane away.  This summer however, I got really very tired. So tired that I would fall asleep for brief periods during the day, especially in the afternoon when it was hot.  Then I had fallen into depression. Depression for 3 weeks. That if it wasn't for my family, I don't know what I could have done. I had never been blue before.  Ok, so then I get busy, stress at work, planning a party for my daughters sweet 16. And then out of the blue, collapse. I get to the ER unable to walk, my head is spinning,vision problems, numbness, weakness, headache, blood pressure is 175/138, they think i am stroking out.  Ok then, MRI"s.  Multiple lesions, T2/flair. 8 days in Hospital with 3 days of Solu-medrol. Then, spinal tap, no results on that yet. New Neuro at hospital stated MS.  And will begin treatment in 2 weeks because i need Physical therapy for my legs.  So, I tell my family and they are freaking out more than I am.  So, they think these lesions do nothing and that most people have'm.   My question is are lesions caused only by ms?, if the spinal tap is negative do i put all my trust in the neuro and get the treatment?  And you know what, my friends at work are like, you can't have ms, cause people with it are sicker than you.  I think that one is a terrible thing to say. would like your input. Thank you.  

[Momzilla]

Hey~

It's good to hear from you, but I'm so sorry about your news.  That's got to be hard to keep hearing.  Have you heard from Angela?  She just started on injections, which she was REALLY scared about and they went just fine.  She said she'd write you, but I spelled your username wrong.  I'll give it to her again.

I hope work goes well.  That's going to be a challenge, but it may help you feel a sense of normalcy again.  Don't let people demand too much of you.  Take care of yourself, and learn to set limits.  I bet people will give you some needed space, and don't let it get to you if they don't know how to react to your groovy black cane at first.  I saw some pretty pink roses ones at my local pharmacy...

Anyway, do take care of yourself, and try to take your time during this transition time.  It's supposed to be rough, I think.  And it sounds like it is.  That's what we're here for, OK?

Feel well!  Look for the sunshine....

Momzilla*

[chrissinlongisland]

I just got back from the neuro. DX. definate MS.  Will start Avonex in the next 10 days. Sending information to a Nurse who comes and teaches the injection process. Doc tried to convince me to go on rebif instead, says it's better. I can't stand the idea of injecting, and injecting. 3x a week discouraged me. He wants me to get back to work on Thursday, and go in for 4 hours a day for the next 2 weeks then go back full time. He's worried because I have an incredible amount of stressors at work. I have alot of people who depend on me, and since I've been out, they have called quite a bit.  But, It did make me feel not so far out of the loop.  And maybe after the phone call, it just added to being down cause I am not doing all the things I love to do. So, today it's sunny in Long Island and with this lovely black cane, I am, going for a hobble, I mean walk, maybe I will make it a couple of houses down.  I hope Quix is ok. I hope to hear from her, or see her responses on this forum soon.    Hope your feeling and doing well.  I hope to stay postitive for awhile.  

[Momzilla]

I wish I knew the answers to your questions.  I don't.  I'm not diagnosed, and I don't know much at all about medication.  

I do know that you are on the right track in stepping outside.  Looking for the sunshine.  I hope today was better.  I thought about you today.  I know this is a very hard time for you and those who care about you.

I know Quix will be along with some answers soon.  Hang in there.  

Thinking of you,

Zilla*

[chrissinlongisland]

Hi. Yes, I am terrified of self injection. I went back down to "depression alley" the last 3 days, just feeling over it today. Finally graduated from the walker to a cane today and maybe tomorrow I will finally make it outside. Maybe I have been inside so long it is contributing to being so blue.

Today my husband went to the hospital radiology department a got a cd/dvd of all those MRI's I had at the hospital 3 weeks ago.  I had been panning through the cd from july 2005 MRI so many times looking for the "lesions" , they were there. Now I get this one. I knew the report said many, but I really did not expect the amount nor the sizes of them now.  I am not a radiologist, but if you spend time googling mri images of ms, you get a lil familar.  I guess after 2 years of running away I am definately going to have to face the fact that the damage is going on.  I am having a hard time with the idea of lifelong injections, and the needle looks sooooooooo big on the youtube videos.

Can this medication really stop this???

I look at those images and wow, I can not believe the amount I have now. Yet the symptoms, over the summer only amounted to fatigue, depression, and an occasional hand or leg spasm, (not like the stuff i had in 2004/05)  I can't believe this is only 2 years worth of progression, or could these lesions occurred during this episode that landed me in the hospital for 8 days?
How often do the docs order MRI's when they prescribe Avonex? How do I know it's working? I am afraid to drive because I am still uncoordinated at times. I am so confused......
Helllllllllllllllllppppppppppppp!!!!  Thank you

[Quixotic1]

Forgot something major.  Absolutely I believe that the MS meds are the way to go with symptoms that "come and go."  The reason for this is that the destructive part of MS, the attack on the myelin and the subsequent destruction of nerves, doesn't come and go.  You may go years without any major symptoms, but they know that the damage to the CNS continues.  When the symptoms finally really show up, you can be disabled seemingly "all of a sudden."  The meds have been proven "statistically" to slow down the disease.  I would want every chance possible to remain in an normal a life as I could achieve.

Right now, our best chance is with the meds.  I truly believe this in my soul.  I try to keep up with what the good research is showing.  There are meds on the horizon that promise to be more targeted with fewer side effects and more effective.  But, I think to wait on them is folly.  What we don't know is when that next big relapse might hit and whether it will take something precious away from us.

My opinion for you.  Q

[Quixotic1]

Hi, again.  I, too am sorry to hear that your family and friends are in denial when you need them.  This is probably more common than the person herself denying the problem (though you have said that you did this too).  We all grieve for the life we had planned to have (though still might have) and the person we always thought we would be.  The people who love you don't want to imagine that "you" are going to change so they deny it or reassure you.  It's hard, really hard.

Mostly I want to hear what your fear about the meds.  Many people think they are like the meds you hear about on TV for rheumatoid arthritis or psoriasis when the announcer comes on and lists things like "life threatening infections or lymphoma or other cancers."  The interferons and Copaxone used in MS do not carry those risks.  They are going to endanger your life.  Any major bad side effects (short of unexpected allergy which can happen with anything - I am deathly allergic to aspirin) are very very rare.  Are you afraid of self injecting?

I have been on Avonex for 6 months and the side effects, which lasted about 18 hours in the beginning (but were controlled easily with Tylenol) now are barely noticeable.  I inject in the evening, and prime myself first with the acetaminophen, then sleep through whatever muscle aches I might have.  But, now I don't have to continue to medicate even the next day.  I don't like the injection, but I jsut put my thinking out of gear and "just do it."

If you can lose that weight, you can get through all of this.

The lesions.  When they are classic for MS and match with MS-like symptoms, they are pretty easily distinguished from other things that cause lesions, like migraines, vasculitis and strokes.  But, as part of the diagnosis of MS they need to rule out the other mimics.  You should have had a whole bunch of blood work to rule those out.

Most people do not have brain lesions.  However as you enter your 40's a good number (not the majority) will develop some non-specific lesions here and there in the white matter.  People in there twenties, especially those with migraines, have been seen with lesions.    The difference, though, is that people with lesions that are "normal for age" do not have the crushing fatigue, the vertigo, the difficulty walking.  In the face of symptoms like that, you can't just say, "Oh, those lesions....lots of people have them."

The public image of MS is that everybody with MS is in a wheelchair.  That's really too bad.  It does lead to disbelief.  There are a good number of brochures available on the National MS website for those around us.  One of the best is called something like "Living With Invisible Symptoms" and can be useful for those around you whose opinions you care about.

Another thing you mentioned in the periods of depression.  Depression is a primary effect of MS.  This means that the disease itself causes the depression, from general brain dysfunction.  Depression is more common in MS than it is in other more serious and more disabling neurologic conditions like ALS.  Also, being constantly fatigue, in pain or just having a chronic illness can lead to a secondary depression.  Make sure your neurologist is aware if you are currently feeling very depressed.  Worsening of depression can be seen with the interferon meds.

Please ask any and all questions you have about what is going on.  That's why we all are here.  We are one source of info and one of the greatest sources of support.

Stay with us!

Quix

[BondyinOz]

The suggestions and support you have received already have been great and I can't really add to that much. I am undiagnosed, although getting closer and closer to my 1st Neuro appointment.

I was so sad to read of your family and work reactions, especially the reaction from work. As someone who has 'invisible' symptoms I get comments from people 2-3 times a week that I look ok so why am I still sick, or at least words to that effect - these are people who, whilst they see me often they don't really "SEE" me, you know? They only see what they want to see I guess. I'm thinking that maybe you feel this way too?

I have other people at work who care about me and my welfare and have really supported me through this horrible year - they are people who just need to take one look at me and know I'm having a bad day. I walked into school (I'm a teacher) on the first day of term recently and my assistant principal did just that - she asked me how I was doing, didn't even wait for me to answer and then said 'you're really not well are you?'. I have coworkers who work in the office just by a set of stairs and see me going up and down those stairs everyday. The other day one of them said to me "it gets harder and harder for you to get up those stairs every day doesn't it?". I have to admit - both of those reactions really shocked me. I mean I know that I'm getting worse every day but didn't think other people could see it because they hadn't seen it happening before.

Those around you will open up and eventually accept that you are sick. My Mum had to go through the grieving and was impossible to live with for a while - she wouldn't accept that I couldn't do things anymore. (I was DXd with Chronic Fatigue in 2003) Finally she accepted it and was generally supportive after that.

Hang in there, we are all here to support each other.

Mel

[Quixotic1]

I saw your other post to me.  I'll be glad to respond to you and tell you why the early meds are so important.  It's also important that you realize that the MS meds ARE NOT immunosuppresssants.  They modulate a certain protion of the immune system, but they are not like chemotherapy or the meds for Rheumatoid arthritis that can leave you susceptible to serious infections and other cancers.  They are much, much safer and benign than those.

Talk to you later,

Quix

[Heather3418]

Just saw your post on Avonex.  I was on Avonex for three years.  I only had 2 flair-ups when I was on it.

Some hints...warm your medication before injecting.  You can do this by holding your filled syringe in your hands.  Take Tylenol or the like, several hours prior to your shot and for at least 48 hours after your shot.  This will help reduce the flu-like symptoms that some people get.  Also, try to give yourself your injection just before you go to bed...this way you can sleep through any aches and pains from the Avonex.

Always remember to rotate legs between your injections.  Don't use the same leg twice.  Don't want any scar tissue building up.  When you give yourself a shot, do it quickly, don't hesitate.  The needles with Avonex are very sharp, which makes it quite easy to inject.  I was so thankful for those sharp needles.  Wow it made a huge difference.

Quix also takes Avonex.  You might want to wait for her to respond to your post.  She is having good luck with hers.  

Let us know how it goes for you....

Heather

[Heather3418]

First of all, congatulations on the tremendous weight loss.  In the past two years, I have lost over 100.  And yes, like you, it really helped makes my other problems (neurological) much better.  Not carrying around the excess weight helped my legs.

You asked if lesions can be caused by things other than MS.  Yes they can.  Migraines, strokes, etc., but they have a different appearance than lesions from MS.  As I am told.  Ordinarily, lesions from MS appear near the ventricules of the brain.  Not to say they do not happen in other areas.  Because they do.  

Your family is reacting to your news, as my family did.  At first they doubted me, but after they dealt with THEIR fears, they began to offer their help.  You have nothing to prove to anyone but yourself by the way.  If your employer doesn't believe you have MS, have your doctor write him a letter.  Remember though, here in the US, the law says we do not have to disclose our disability to employers.  But if you need help at your work place because you do have MS, then I would most likely tell my boss, also.

Everything will settle down with family and friends.  They will start to become accepting of the diagnosis, just as you will.  Please keep us posted.  Have you received the results from your lumbar puncture yet?

Hang in there and keep your chin held high....

Heather

[chrissinlongisland]

Thanks for your postings. The kids are at school and the spouse is working and since I have been home recovering it has been up and down for me. TV never seems to pass much time and then I get a lil overwhelmed by all of this.  When I got the lumbar puncture, the Neuro hit some nerve in my back that runs to my left ankle. So, now I have pain. I am doing my best with my leg, and i hope it heals so I can get back to life. I worked so hard last year to loose weight and be healthy. I am still on predisone and am being weened off each day. Its really hard not to be depressed.  I am worried about the medications for ms. The doc says he will use Aveonx first.  Any input? I really appreciate your responses right now :]  

[grannyhotwheels]

Sounds to me like it is MS but I'm far from being a doctor and really don't know much about anything.  I have and do have your symptoms and I was diagnosed in August.  If you want another opinion that's very understandable but the quicker you start MS treatment the better off you will be.  

I hope everything works out for the best for you.  I think my family and friends deny my MS too but it's like Terrie said they love you and need you so they sure don't want you sick.

I'll be praying,
Carol

[TonkaSpirit]

Hello, please listen to what "your" body is telling you.  If you still have doubts or issues that you feel are not being taken seriously , then change your doctor.  I understand the family thing, and I think they do this out of fear.  They don't want you to be sick.  They love you & need you, so they are happier in denial.  Have all of your testing done, and hopefully there is some other explanation, but you know when things are wrong within your own body, don't ignore that.  I am sure many will reply to your concerns as everyone here is very positive and supportive.  You are not alone.
Terrie