Re: help please -tJoan from Bonnie

[Guest guest]

Thanks Joan for your help and advice. I saw my rheumolotogist today and she feels this is MS. I don't know. My MRI was negative but the person who gave me the gadolinium injection for contrast was new at her job. She basically made a tournaquit with the bandage and I ended up with a huge lump of the stuff just above my elbow. I had to keep my arm bent in the tube, no room to move!! So, I wonder now whether or not any contrast got through and are they basing a negative mri on that and is it true??

My rheumo has always had a question as to whether or not I really have sarc because of the lack of a tissue biopsy. So, if any of you have the opportuinty to get one that didnt get one before, don't hesitiate. Your true diagnosis counts on it. I have some syptoms that could be explained either way. She is sendinng me to a neuro doc that she knows and really thinks knows his stuff. ll make the appointment tomorrow.

She offered me stronger pain meds and I turned it down for now. She did give me some strong muscle relaxers though and they will help. I've used them before. We have a strong addiction gene in my family and I know once I start with stronger meds, it'll be hard to not need them. I'll know when that time comes. I work in health care for a group of surgeons, actually. They are very good to me and I need to work and luckily, still can.

I live in Hamilton near Trenton. We could meet up someday and do lunch or something. I have Thursdays off right now. It's nice to put a face to the email.

I'm still processing my visit today and trying to not jump the gun. In some ways, it'd be easier,y'know, to have ms. At least it's well known and better understood than ns. It's be easier to get disability if I should ever need to. But, still, its a hard diagnosis. And this doctor knows me. I've been going to her for 4 years. She wouldn't label me with sarc!! But she basically said I have ms today...

I don't have much support here. My husband has been having an affair now for a couple of years. Hes in total denial about my illness and told me he could'nt handle it. I will be divorcing him as soon as my youngest graduates from high school next year. My husband is being a s**t and is making me sell our house when we divorce, so my son wouldnt be able to go to his school if I move. I can't afford to live in my neighborhood on my own. I'm not going to tell my kids till I'm 100% certain of whats going on. They are older but they worry enough about me and are under great strain already because of our family situation.

That being said, we all still eat dinner together every night, even the jerk. I will have to tell all of them eventually. That's why this board is so important to me and to all of us who need a safe place to talk about how this illness affects us on daily basis. The mental stuff is almos worse than the physical, know what I mean?? Thanks guys, for being there!!!

Bonnie

[Guest guest]

Bonnie

My neuro is supposed to be an expert in ms. I was sure

I had MS because of my symptoms but the way he

explained it to me was NS mri's had white spots from

the inflammation & MS had black holes. At least

that's what I remember. I thought MS would be easier

too. They have a much bigger support system it

seemed.

On another note- I had treatment today. I was sitting

in the waiting area & met a woman who had a son

getting treatment for neurosarc!!!! I got called to go

in my room & she had to go pick up her grandson so I

didn't get to talk to her much & I really wanted to

meet the son. I've never met anyone with this disease

in person. She told me he had had 2 strokes & several

tias. This is my greatest fear. I'm not afraid to die

but I am afraid of ending up a veggie. I don't want to

be a burden to my daughter & her kids. I told my dr I

was getting the feeling back in my butt & she laughed

& said that was a good thing. I had my chest xray

today & get my mri next Tuesday(Unless financial pulls

my plug over the $4,000 I owe them LOL) As of January

1st the pharmacy will NOT bill for meds but I have

been stockpiling what I could for months.

Sorry so long winded tonight. Blame it on the

steroids. Just be glad you aren't here. LOL I'd love

to talk your arm off. And by the way where's that

wizard with my brain? LOL

grannylunatic@...

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[Guest guest]

Bonnie:As I read your post this morning I felt that I was reading about myself today. I was actually treated for MS for about 6 months before going to s Hopkins about a year ago and being told there is no basis for that diagnosis. MS sometimes is a catchall when there is no clear cut diagnosis. I have had three - count them - three lumbar punctures. The first on had oligliclonal bands only - no protiens or anything else signifying MS - and the other two have been negative. I have been scanned (MRI) with and without contrast from my brain to my L-spine many times over. I had a biopsy of the parotid gland - negative but I have had a positve ACE years ago. I do have a lot of the problems that everyone else has had; vision, headaches, falls, etc. My big problems now are bladder issues (neurogenic), left sided weakness, fatigue and cognitive issues. I have a couple of docs that still think MS, but only one who will consider NS. The rest think it is too rare for me to have. I do have an enlarged hilar node in the lung, but it is in too risky of a place to get to it. I will have my next chest CT (#3) at the end of this month to see if it is enlarging or if there are additional nodes that can be biopsied.Let me know what they decide to do next. I am like you I would rather have MS because they have ongoing research and numerous drugs specifically for MS - I injected myself with the meds for nine months before the s Hopkins visit - but right now I am only have my symptoms treated.As far as your husband goes, can you spell ALIMONY? You have legal rights. Get a good attorney! Find proof of that affair and keep it until you separate. Also, find a good therapist (pastor, psychiatrist. LCSW) whatever. Just because you are sick does not mean you are not an important, loved, wonderful person. You may not have the great health we all want but you are not defined by your illness. My husband and I actually separated for 9 months but we were able to work our problems out. Not all can be; just be honest with yourself and your children. I will pray for you and send good thoughts your way. Take care of yourself.Terri G. >> Thanks Joan for your help and advice. I saw my rheumolotogist today and she > feels this is MS. I don't know. My MRI was negative but the person who gave me > the gadolinium injection for contrast was new at her job. She basically made a > tournaquit with the bandage and I ended up with a huge lump of the stuff > just above my elbow. I had to keep my arm bent in the tube, no room to move!! So, > I wonder now whether or not any contrast got through and are they basing a > negative mri on that and is it true?? > My rheumo has always had a question as to whether or not I really have sarc > because of the lack of a tissue biopsy. So, if any of you have the > opportuinty to get one that didnt get one before, don't hesitiate. Your true diagnosis > counts on it. I have some syptoms that could be explained either way. She is > sendinng me to a neuro doc that she knows and really thinks knows his stuff. ll > make the appointment tomorrow.> She offered me stronger pain meds and I turned it down for now. She did > give me some strong muscle relaxers though and they will help. I've used them > before. We have a strong addiction gene in my family and I know once I start with > stronger meds, it'll be hard to not need them. I'll know when that time > comes. I work in health care for a group of surgeons, actually. They are very good > to me and I need to work and luckily, still can.> I live in Hamilton near Trenton. We could meet up someday and do lunch or > something. I have Thursdays off right now. It's nice to put a face to the > email.> I'm still processing my visit today and trying to not jump the gun. In some > ways, it'd be easier,y'know, to have ms. At least it's well known and better > understood than ns. It's be easier to get disability if I should ever need to. > But, still, its a hard diagnosis. And this doctor knows me. I've been going > to her for 4 years. She wouldn't label me with sarc!! But she basically said > I have ms today...> I don't have much support here. My husband has been having an affair now > for a couple of years. Hes in total denial about my illness and told me he > could'nt handle it. I will be divorcing him as soon as my youngest graduates from > high school next year. My husband is being a s**t and is making me sell our > house when we divorce, so my son wouldnt be able to go to his school if I move. I > can't afford to live in my neighborhood on my own. I'm not going to tell my > kids till I'm 100% certain of whats going on. They are older but they worry > enough about me and are under great strain already because of our family > situation.> That being said, we all still eat dinner together every night, even the > jerk. I will have to tell all of them eventually. That's why this board is so > important to me and to all of us who need a safe place to talk about how this > illness affects us on daily basis. The mental stuff is almos worse than the > physical, know what I mean?? Thanks guys, for being there!!!> Bonnie>

[Guest guest]

Bonnie, good for you on the dancing thing! and i think his calling you nuts just lets him off the hook for his own behavior(...in his head!)....and instead blames you. Please see through these mind games of his and from the posts you've shared so far you sound pretty rational to me. Being 'nuts' and having jello for brains cuz you're sick are two different things. I understand your wanting your son to finish school where he's always been but he's also seeing you treated like sh** and that isn't so good for him either. Hang in there no matter what you decide to do cuz stress makes sarc alot worse. Maybe that dancing is as good a therapy as anything....sure sounds good to me. Maybe see a couple cute guys while you're out on the dance floor, too. lol Keep up the great attitude. hugs

S.quiltenbe@... wrote: Teri, I am seeing a what started out as a marriage counselor tunred therapist for me only, since my husband refused to go. I have already consulted two lawyers also. I have decided to wait one more year so my son can finish high school with kids he's gone to school with from kindergarten. He's honor-roll, gt and deserves this time. I will get alimony, married 27 yrs, and his salary is about 5 or 6 times mine. I dont know what to make of all thiss and the next step is to see the new neuro that my rheumo recommended. I'm tired of the drill already and I'm just starting

the next phase!! Thanks for all your info. It does help. Do you feel that having this in your brain has changed your behavior?? I'm curious because my husband claims I'm nuts. My kids, my coworkers, my friends and my therapist all say I'm the most normal person they know, but, my husband has known me a long time. I guess Im just second-guessing. And then. for me, there's the diagnosis thing and getting new health insurance-life insurance thing when I get divorced. Has anybody had trouble with that?? Maybe Ill just stay married to the creep and have an affair instead!! I took a day off from work and had a little pity party and now it's over. I went out dancing last night to celebrate life and learned the merengue. I have no intention of letting this define me!!! Bonnie (one-two,one,two, three!!!)turn!

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[Guest guest]

Bonnie, good for you on the dancing thing! and i think his calling you nuts just lets him off the hook for his own behavior(...in his head!)....and instead blames you. Please see through these mind games of his and from the posts you've shared so far you sound pretty rational to me. Being 'nuts' and having jello for brains cuz you're sick are two different things. I understand your wanting your son to finish school where he's always been but he's also seeing you treated like sh** and that isn't so good for him either. Hang in there no matter what you decide to do cuz stress makes sarc alot worse. Maybe that dancing is as good a therapy as anything....sure sounds good to me. Maybe see a couple cute guys while you're out on the dance floor, too. lol Keep up the great attitude. hugs

S.quiltenbe@... wrote: Teri, I am seeing a what started out as a marriage counselor tunred therapist for me only, since my husband refused to go. I have already consulted two lawyers also. I have decided to wait one more year so my son can finish high school with kids he's gone to school with from kindergarten. He's honor-roll, gt and deserves this time. I will get alimony, married 27 yrs, and his salary is about 5 or 6 times mine. I dont know what to make of all thiss and the next step is to see the new neuro that my rheumo recommended. I'm tired of the drill already and I'm just starting

the next phase!! Thanks for all your info. It does help. Do you feel that having this in your brain has changed your behavior?? I'm curious because my husband claims I'm nuts. My kids, my coworkers, my friends and my therapist all say I'm the most normal person they know, but, my husband has known me a long time. I guess Im just second-guessing. And then. for me, there's the diagnosis thing and getting new health insurance-life insurance thing when I get divorced. Has anybody had trouble with that?? Maybe Ill just stay married to the creep and have an affair instead!! I took a day off from work and had a little pity party and now it's over. I went out dancing last night to celebrate life and learned the merengue. I have no intention of letting this define me!!! Bonnie (one-two,one,two, three!!!)turn!

Yahoo! Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

Bonnie, good for you on the dancing thing! and i think his calling you nuts just lets him off the hook for his own behavior(...in his head!)....and instead blames you. Please see through these mind games of his and from the posts you've shared so far you sound pretty rational to me. Being 'nuts' and having jello for brains cuz you're sick are two different things. I understand your wanting your son to finish school where he's always been but he's also seeing you treated like sh** and that isn't so good for him either. Hang in there no matter what you decide to do cuz stress makes sarc alot worse. Maybe that dancing is as good a therapy as anything....sure sounds good to me. Maybe see a couple cute guys while you're out on the dance floor, too. lol Keep up the great attitude. hugs

S.quiltenbe@... wrote: Teri, I am seeing a what started out as a marriage counselor tunred therapist for me only, since my husband refused to go. I have already consulted two lawyers also. I have decided to wait one more year so my son can finish high school with kids he's gone to school with from kindergarten. He's honor-roll, gt and deserves this time. I will get alimony, married 27 yrs, and his salary is about 5 or 6 times mine. I dont know what to make of all thiss and the next step is to see the new neuro that my rheumo recommended. I'm tired of the drill already and I'm just starting

the next phase!! Thanks for all your info. It does help. Do you feel that having this in your brain has changed your behavior?? I'm curious because my husband claims I'm nuts. My kids, my coworkers, my friends and my therapist all say I'm the most normal person they know, but, my husband has known me a long time. I guess Im just second-guessing. And then. for me, there's the diagnosis thing and getting new health insurance-life insurance thing when I get divorced. Has anybody had trouble with that?? Maybe Ill just stay married to the creep and have an affair instead!! I took a day off from work and had a little pity party and now it's over. I went out dancing last night to celebrate life and learned the merengue. I have no intention of letting this define me!!! Bonnie (one-two,one,two, three!!!)turn!

Yahoo! Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

Bonnie, I do not have a firm diagnosis but just the suggestion from 's Hopkins but I can tell you my brain is mush. I say things I never would have before. Some things have been quite inappropriate. I forgot how to change the water temp when I am in the shower. I have lived in my house for over seven years and I stand there either freezing or scalding trying to figure out what to do. I stutter a lot when I have cognitive fatigue and at times have lost the ability to speak. Luckily, I am still able to communicate with paper and pen on puter. I can understand wanting your child to finish with friends and finish in the same school. My mother stayed for us but we told her later we wished she would have done it but I don't know how I would have felt if I had to leave friends and my school. She waited until her oldest two had graduated because the younger two had a lot of years to go. Also remember stress will really make you worse so do your best to manage your stress during this difficult time.Take care and it was great talking...Terri G. >> Teri,> I am seeing a what started out as a marriage counselor tunred therapist for > me only, since my husband refused to go. I have already consulted two lawyers > also. I have decided to wait one more year so my son can finish high school > with kids he's gone to school with from kindergarten. He's honor-roll, gt and > deserves this time. I will get alimony, married 27 yrs, and his salary is > about 5 or 6 times mine.> I dont know what to make of all thiss and the next step is to see the new > neuro that my rheumo recommended. I'm tired of the drill already and I'm just > starting the next phase!! Thanks for all your info. It does help. Do you feel > that having this in your brain has changed your behavior?? I'm curious because > my husband claims I'm nuts. My kids, my coworkers, my friends and my > therapist all say I'm the most normal person they know, but, my husband has known me a > long time. I guess Im just second-guessing.> And then. for me, there's the diagnosis thing and getting new health > insurance-life insurance thing when I get divorced. Has anybody had trouble with > that?? Maybe Ill just stay married to the creep and have an affair instead!!> I took a day off from work and had a little pity party and now it's over. > I went out dancing last night to celebrate life and learned the merengue. I > have no intention of letting this define me!!!> > Bonnie (one-two,one,two, > three!!!)turn!>

[Guest guest]

Good for you Bonnie!!!!! I feel like I am different

than I was before I got this crapola in some ways I

act but I am pretty much the same as always. I think

the medications change our actions too but that's just

my opinion. If your son is going on to college your

future ex may have to pay child support, I guess

depending on the state you live in. Shucks, I ain't a

lawyer either. Maybe I should have listened to MY

parents back in the 60's LOL.

grannylunatic@...

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