Demyelinating Lesions

[Quorrah]

Hi.  I am a just-turned-40-year-old female.  I have had many health problems for many years.  The most recent is a very small demyelinating lesion in my brain and a large one in my T8 spine.  I am quite scared and I'm having many symptoms.  On the one hand, I'm feeling like I'm complaining about nothing and why don't I just put the walker away and MOVE!  Forget about the headaches and going slow, get back to driving.  I try and I'm just not able to.  This makes me feel HORRIBLE!  Fighting w/DOL, SSDI, SSI, and lawyers isn't helping.  I have very little energy/stamina.  On the other hand, I want to learn about my many medical issues.  My clinician, Kerri, had suggested to me that I go online to talk to others that are going through these things.  I have found that I only have one 'friend' left and my boyfriend.  Everybody else is freaked out.  I feel like a pariah.  Ugly.  Sometimes I feel like I'm a hypochondriac.  My word, so many meds!  Please help me to feel sane.  I'm scared and feel alone.  Hearing enouragement and what others are going through and how they're getting through to the other end of this confusion would really help.  Has anyone else ended up in counselling, etc.?  Please help!  Also, if you know of any live chat-type or more immediate messaging, events re:  lesions please let me know.  Thank you.  PS  I have a LP set for February.

[Lulu54]

The problem with telling your doctors that you have been on the internet is mainly they will come to the wrong conclusion that you have made your symptoms fit what you have read about MS.  There is so much in this disease that requires a trusting relationship btween the doc and the patient because so much can't be "measured."  

The straight talk on enhancing lesions: lesions only show enhancement when you are given gadolinium (contrast dye) during an MRI.  The lesion enhances if it is less than about 40 days old.  Only new lesions will enahnce.  Old ones (over 40 days)  do not enhance.  A misconception from people is they have to have contrast dye  during their testing - if lesions show on MRI's they will do so whether they are new or older, without contrast dye.   What is helpful in having contrast dye and having enhancing and non-enhancing lesions both be visible is it established a separation of time with the disease activity.  

I hope I haven't lost you on this one.... One of the diagnositic requirements for MS is that you have more than one episode of attack/inflammation (separation of time).This requirement can be met with having both enhancing and nonenhancing lesions.

The researchers still don't know for sure what MS is - one of these days we all hope they will crack this case. But for now we really think it is it's own disease.  There are an awful lot of autoimmune disease out there, and for now we think MS is one of those.  

Don't overlook that even though we have MS we may have other diseases, too.  You say the mental health specialist is familiar with MS and perhaps she is transferring that bias to you and your situation. but then again, having brain and t-spine lesions is a pretty unusual combination and it is understandable why it would lead her to think of MS.

I hope something in here is helpful to you - be sure and come back often and ask all the questions you have.
best, Lulu

[Quorrah]

Does Polly assist you w/the MS issues?

[Quorrah]

Thanks for the warning re:  don't inform your doctor that you're doing research on the Internet.  Unfortunately, I've already done that a few times.  At first, my PCP was positive.  Now, she seems insulted.  My APRN (Psych) thinks it's great.  I guess it might depend on the doc.  Oh well.  :)

At Physical Therapy, the assistants keep 'reminding me' that there are a lot of different things that the lesions could be and to not jump to conclusions.  That kept me away from seeking this site for many months.  Again, my counsellor encouraged me.  I'm glad she kept mentioning this and MS (one of her specialties is counselling those
w/MS--I did not know this when I began w/her).  This response really confuses me.  Am I overreacting?

What does it mean that the lesions are not inflamed?  I don't want dry medical terms.  I'm looking for something from someone that is living w/the illness and what they were told and what they are feeling in their body.  I have constant back pain/hip pain.  I have many medical issues, but I've been reading that MS may be a bunch of illnesses all together OR an illness on its own.  That is also confusing!  (I have Arthritis and I was in a car accident last year where my hip and knee were broken--also previously broken back).

Can not using my CPAP seriously harm me?  I didn't die w/o it before???  Um, obvious.

Thank you for the welcome and your reply.

Happy 2011!

[Quorrah]

Hello again.

I was wondering:  does anybody out there use a CPAP as a bi-PAP and are they having trouble tolerating it?

The first problems that I connect w/this are when I was 7 or 8 years old, but it could've been younger.  ???  I didn't start wondering about myself and MS until there was a client of mine w/MS.  It looked familiar.  It took me another couple of years to approach my doctor.  He refused.  I changed doctors.  Now all this.  It's a lot; however, I WOULD rather know than not know.

I've been diagnosed w/a lot of psych stuff too.  Proof was found that my liver does not process correctly and one of the direct results is Depression.  I find that very interesting.

You can't get disability?  You sound like you definitely qualify...  ???

Yes, mind over matter.  I get that alot, especially at Physical Therapy.  I just wanna smack the comments off their mouths sometimes!

How do you get everything done w/so little energy?  I'm being told that I need to rest numerous times a day and I'm finding that's necessary.  I'm trying to get some home help/case management but so far, no help.  I'm WAY behind, and the nausea forces me to stop in my tracks, usually once a day.  How do you (and others--feel free to join the conversation) deal w/time management and prioritizing?

I will say a very heartfelt 'ty' for my boyfriend, Dav.  Yes, he is an amazing person.

I don't always want to answer Dav when he asks how I am.  Sometimes I tell him to nevermind all that for now.  I know he doesn't always want to hear it, but he always asks.  I'm learning to divert him.  I'm not able to do the housework and cooking right now.  That really *****.  I still am working 1 shift.  It's quite difficult but I'm trying to hang in there.  I'm hoping this is just an 'excacerbation' and I can do this.  I don't want to lose my job, but I'm pretty sure I'll never be promoted.  That *****.  I have the
know-how; my body just won't cooperate!  Dealing w/work, $, everyday stuff, and my kids is really tough right now.  God bless the people who have dealt w/this for a long time.  I'll be reading and keeping tabs so I can learn.  I'm thankful to be among others that are in 'my world'.

I wish I could at least drive.  I feel quite useless and like I'm not helping Dav.  He told me he'd like me to help out w/stuff.  I'm not able to.  It's rare that I can do stuff he needs.  It *****!  I used to do the errands.  I'm unable to drive now.  Thank God, again, for the Internet.  I'm able to do some shopping to help him w/that burden.  I am so looking forward to the day when I can do more again.  I used to cook from scratch and I'm a great cook!  I miss it.  I'm not going to give up!

Have faith (for me--that would be God), and accept life on life's terms.  Yes.  Excellent advice...

Thank you for your response.

Happy 2011!

[Lulu54]

Hi Quorrah and welcome.  I see Alex has already given you some excellent heartfelt advice - coming to terms with all of this isn't easy.  It can be a day-topday progress and often it is a struggle to remain positive.

I laugh when you ask about a dummies book because there is on this subject - Multiple Sclerosis for Dummies.  It is a great guide for beginners with this disease to help put a lot of issues into persepctive.

One thing I advocate everyone do when facedwtih the possibility of MS is to educate yourself  - the more you learn the less frightening the prospects can be.  Also, being informed helps you to have educated conversations with your doctors.  one warning, though -- don't say too much about reading on the internet because many doctors don't respond well to that idea.

Knowledge really is power- and that is what you need right now.

So many people, especially women, spend years struggling to get answers only to be told repeatedly that it is in their heads.  Don't allow yourself to be discarded with that response, especially now that there is physical evidence of lesions.

For now don't be too angry about the doctor not ordering contrast- many people attach way too much importance to that. The contrast is only important in showing if the disease is currently active  - if you have lesions, whether they are active or not, they will show on the MRI without contrast.  

Don't make any funeral plans yet - this disease does not kill people.  It used to be people with MS lived on average 7 years shorter than healthy folks, but that number has changed and now it is about equal.  Therapies that have been developed in the past 20 years have radically changed the face of this disease.

Good luck with learning more and I hope we'll see you around.  Being the holiday weekend it is very slow here, but I'm sure it will pick up once Monday comes.

welcome again, Lulu

[HVAC]

The good News it is rare to die from MS. You can learn to live with what ever is going on. It is not easy but you learn that accepting things just as they are takes so much less energy and brings you peace. I used to be the worlds angriest, most depressed person.

I had Doctors say there was something wrong Neurologically when I was 2 1/2  and many times in childhood but I was not diagnosed with MS until I was 46. Basically it took me over 40 years to be diagnosed. I was so used to my MS I did not know I had it. My GP noticed it and I thought she and all the Doctors who said I may have MS were nuts.

I was even misdiagnosed with many mental illnesses. My Psychiatrist now says I have no mental illness it was MS all along.

I have lots of financial problems. I can't work and can't get disability. I have learned that worrying just makes it worse. Especially if my worrying upsets my husband then both of us are upset.

Those I love had a real hard time accepting my MS. Some thought it was mind over matter.

I have had bad experiences with Doctors but I do not have the energy to waste on resentment. I have to focus on the good Doctors I have now. Some of the Doctors I thought were not taking me seriously were I just did not understand what they were saying and took offense where none was meant.

The boyfriend thing is tough. I see your side but I can also see his side. It is hard enough for someone to stick to the marriage vow of Richer or Poorer or in Sickness or in Health, but not being married and taking on that much responsibily with a sick girlfriend is rather amazing.

The person with the disability has to be extra giving and meet the needs of the loved one to make it work. My husband said "It is always all about you and your illness". He was right and that was my wake up call.

I started to be extra sensitive to his needs. He does not want to hear me whine too much. I need to support what he is doing for example my husband is a bicyclist. He is the bread winner so I keep the house clean, do the errands, and the like. He can take only so much complaining. Most people just can't take much negativity.

Do your best, have faith in something higher than yourself, love yourself, be thoughtfull of others, and accept life on life's terms.

Enjoy the rest of 2010.

Alex

[Quorrah]

I am also feeling a lot of anger towards my former physician.  He flat-out refused to send me for an MRI w/contrast.  I'm having trouble w/DOL b/c I want to work a little still.  Why is it so hard for a doctor to just sign a piece of paper?  Especially when I'm trying to stay in the workforce!  I don't understand these decisions.  It's like no one wants to take responsibility for anything!  Meanwhile, my income is dwindling even more!  I'm not used to having to depend on my boyfriend for basic needs.  This is hard.  You're right--it IS surmountable.  Through this site, I am hoping to hear encouragement and words of wisdom that I need very much at this moment.  Thank you for the quick response.

I am TIRED of being told it's "in my head".  After the MRI, I was actually shocked that something was found and there was a problem.  I'm so used to doctors pooh-poohing me that I wasn't prepared.  I was very scared and sad.  It took a long time before I told anybody--my boyfriend.  I don't feel that he provides the support that I am in need of.  I know he's trying, but it scares him too, and I don't think he knows how to deal with it.  Idk, is there an Illness for Dummies-type book.  (I don't mean to offend anyone by typing that, just trying to be funny.)

Wow, HVAC, you've been diagnosed since 2 1/2 years old or that's how long it took to get a diagnosis?

I don't want to die yet.  There's still so much out there!  OK, I've said it now.  That's my worst fear.  I know I'm coming about strongly.  I'm feeling that this is a good place to vent, then to learn how to re-socialize.

I really hate how all this is affecting my worklife too.

Thank God for Polly.  It sounds like you have a furry little Angel by your side.  :)

Thank you for reading this.  I welcome comments.

Merry Christmas.  Joyeux Noel.  God Jul.  Feliz Navidad.

[HVAC]

Hello you have come to the right place many of us have felt what you are feeling or are going through it for the first time.

Take a deep breath and try not to think about the LP. The fear is much worse than the test.
Many of us have been accused of it all being in our heads.

I still feel like I should get over it and I have had symptoms and been told I have had MS since I was 2 1/2 and I am 47. It takes some time to sort out what is going on in my case it was two years.

There is truly nothing to fear but fear itself. Whatever it turns out to be is manageable. May be not easy but manageable.

As far as friends go the best thing to do is get out of yourself. If when you talk to people it is about you they tend to run. I call people up and ask about them. I have a friend in a wheelchair and she has tons of younger friends because she never talks about herself. We are taking her Xmas Eve dinner. I have known her 30 years, she was my Professor and she has taught me a lot about life.

Remember worry is trying to control what you can't, guilt is wasted unless you killed somebody, and regret is hanging on to the past. My Service Dog Polly teaches me to live in the moment. There is nothing to bad in the moment.

Again Welcome.

Alex