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281565 tn?1295982683

how do I help her?

This is Monika's husband. I need your help. I know she'll be mad at me and embarrassed that I came on here but she won't do it herself as she says there are people worse off than her on here. But she talks about how great you all are and right now I'm lost to how to help her. She was doing great and then got the flu this week. Couldn't talk her out of working so now she is really tired and getting these weird spasm kind of pains. She went to her family doc on Thursday and he won't get her into another neuro. He said she has been to one and that she should just learn to live with her symptoms. The guy is in his 70's and recently had a stroke. He shouldn't be practising. He says if her eyes get worse he'll pull her license but he won't send her to anyone to get it looked at. Now she needs to find a new family doc on top of all this other ****. He did give her a copy of her last MRI that she had and she has gone from having no lesions to this one saying she has 8 mostly in her subcortical? She is really down and I'm worried. Yet nothing is wrong with her?She says she's ok but I know she's not. I want her to come on here to talk with you all but not sure how to do that. She is always better after talking on here. Can anyone help. I want her to post the mri report for you to see what you all think.   Rob
12 Responses
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Avatar universal
My suggestion is to run, don't walk, to another Dr.  Don't know what state you live in, but ck phone book for an MS Center so your wife can get proper treatment.  
Is she on any meds/injections?  
Another place to contact is www.narcom.org (also try www.***@****.).
NARCOMS tracks MS subjects  (I've been tracked for years).  Another one (haven't tried them) is United Spinal Association (718-803-3782) in Jackson Heights NY  Best of luck
elf442
Helpful - 0
271770 tn?1221992084
You did the right thing by posting on here - kudos to you for doing it. Perhaps you should consider printing this page off and showing it to her? Maybe it will help her realise how scared you are for her?

I'm certainly no doctor, but going from having no lesions to saying she has 8? That's not a good sign and she needs help as soon as you can arrange it. That's a lot from what I understand and she needs to get a diagnosis so that she can possibly start medication for whatever it is, because that process needs to be slowed down!

She definitely needs to see a different doctor and SOON, not to mention another Neurologist. I know how it can feel when you're unwell and you feel like you'd be bothering other people too much if you let them know how you're really feeling, but she needs to understand that no one is infallable and we all need a shoulder to cry on - that's why we're here, to offer each other support. Yes, there are always going to be people who are worse off than us but that does NOT mean that our own illness isn't valid, concerning or distressing.

If she is in serious pain she needs to consider not going to work - I know it sucks and is REALLY annoying, but it is NOT giving in!! If you are really unwell you just need to step back and admit that things aren't going so great right now and that taking a day or two off to get your energy stores back up is a good idea. I'm a teacher and have to set reliefs for the classes I miss for the two days I have off each week, plus the other days I have to have off sick, and it is no picnic - it's so time consuming that I almost always end up going to work instead of staying home where I really should be.

Monika, if you're hurting and scared, and you don't know what to do, please let us know - we may not be able to reach through the computer and fix you, but we can at least offer our suggestions, our comfort and our love. Please go to another Dr - it is a big pain but you will be better off - you need to get yourself better and fast! Please take time off of work if you are struggling - just plowing on through is only going to make you worse in the long run, trust me!

Also, whilst I cannot help you regarding the MRI report (as I am still undiagnosed) there are others on here who have some knowledge of these things and might be able to shed some light for you, so I would strongly recommend getting the info up here.

I hope this helps you, and thank you again for posting Rob.

Mel :-)
Helpful - 0
Avatar universal
Rob,

When dealing with MS, the flu will and can cause a flair up.

Find a new GP and get a referral to a new neuro.Obviously this GP should be retired and if he has had a stroke he is not benifiting his patients.Get your wife into an opthamologist for her eyes.

Rob if Monika is getting persistantly worse take her to the ER.They will get the mri report and many larger medical facilities have neurologist on call.She needs to stay home from work when she is sick,your wife is a very strong willed lady,but she can only push her body so far.

From no lesions to 8 ,this definately shows a disease progression occurring.I can understand her being quite upset.Being told to live with the symptoms thats awful as the symptoms can be persistant and relentless.

Really push for a new GP even if you have to make the appointment yourself.

Rob I wish you could post the MRI findings as that can help us in regards to explaining it to you and Monika.

Give her hugs for me.

T
Helpful - 0
222135 tn?1236488221
Moki is very lucky to have you sneaking behind her back to find out what to do, lol! My hubby would do the same - good for you!

It is well past time to find a new doctor. I know she has enough to deal with already, but this guy's GOTTA go, like yesterday! Don't let her hide away when she needs support. Don't let her give in to the pain and the frustration. I speak from experience. I have no diagnosis and have very nearly just given up a couple of times. Sometimes it really seems it's not worth the effort. It seems the patient has to act like they are an attorney, like they have to prove there is something wrong to the docs who should know - like they're looking for "reasonable doubt".

I'm torn about the work thing. I drag myself to work on days when I know I shouldn't, but work sometimes is all that keeps me sane - makes me feel like I'm still my former self.

Take good care of our girl. Wish I could be of more help.

Penn
Helpful - 0
281565 tn?1295982683
Thanks for responding. I can't be on long as she got up to take a pain pill. She thinks I'm playing poker. I'm going to tell her in the morning that I came on here. She'll be hopping mad with me but I think it might just make her come back on to talk with you all. If she doesn't I will come back and put the report on for you to see. She is stubborn when she wants to be for sure but I know she doesn't want to give up. We're in Canada, so getting a new gp will be hard. We live in the country and there is a real shortage of docs here. As for going to the er well right now I know she won't go. If she gets worse I'll hog tie her and take her myself. I just want her old self back. The sarcastic fun gal. I just don't know what to do anymore. But I thank you all. She is right. You are all great people.
Helpful - 0
Avatar universal
Rob , Monika is lucky to have you.

If ya have to hog tie her so be it we'll send you the rope.

It was but a few days ago she gave me the dickens ,because I left the boards for a while to deal with the progression of my MS and dealing with a secondary disease process and that I needed to share and not deal with all of it alone.

If she gets hopping mad that okay,it shows how much you care.You are doing a great job and I can understand that you want the Monica back,she's in there she'll be back,sometimes it just takes time.

The not knowing is the worst part when you know what your dealing with the road gets a little easier but with a few speed bumps along the way.

T
Helpful - 0
199882 tn?1310184542
Rob, you are a wonderful husband.  Thank you for being such a stand-up guy for your wife.  She is so very blessed to have found you.

Moki,  get up and go to a new doctor so you can get referred to a good MS neuro., but before you do anything wrap your arms around your man and tell him how much you love him.  Now get going!

I'll be praying,
Carol
Helpful - 0
195469 tn?1388322888
Moki girl,

Hubby tells us that you aren't feeling well.  Oh honey, please don't be so stubborn and get your little butt to an ER.  I know what it's like living in Canada and being so far away from so many things.  (I used to live there)  But I don't give a hoot if you have to drive 4 or 5 hours to get to a good hospital.  You need to go to the ER and possibly be admitted.

They will be agle to give you something for your pain there in the hospital, so you aren't suffering so much.  Honey if you have the flu, no wonder all the other symptoms are worse.  You need help sweetheart.  And stay the heck off from work.  You have no business spreading that flu around anyway, girl.  You need to rest.

Give that hubby a kiss for us.  He's a champ...what a guy!!  You can tell he loves you so much.  Lucky woman.  Now listen to what your huddy says.  Do you hear?

Boy when you get to feeling better, I am really going to give you an earful.

Get better soon and post when you get to feeling better.  AND I want to hear that you have been to another doctor.  The other one sounds like he should have retired long ago.  All these lesions honey, means that you are in an active flair-up.  You need some help getting through it.

Hugs and all, to you and your hubby,  ((((BIG HHUGS))))

Heather  
Helpful - 0
Avatar universal
Moki, Please, please, please do as your husband and the others advise and take care of yourself.  We want you better for yourself, your husband, and for us.  You really give us lifts sometimes.  Your work will be there another day.  Besides, wouldn't you rather go when you are feeling better and can do a better job of it?  You can always work; but, you cannot always turn the clock back on your health.  It has to be at the top of your priority list right now, Moki.

The flu can trigger and/or exasperate symptoms really quickly and make you feel like #^*#.  Don't let it win.  See a doctor and get to a good eye doctor.  Is there a neuroopthalmologist that your doctor can refer you to?

Was the MRI done with contrast to show any enhancement?  It sounds like you need medication to slow things down and the quicker the better.  

You are so lucky to have such a caring partner.  Get better so that you can enjoy yourself and be the best you can be for your family.  If you are scared or down at least go get some medical help to get better for their sakes.  It is obvious that you have someone that loves and cares for you.

You need new doctors and now you have the paperwork to prove what you need.  Go get it, girl!  We are here concerned and rooting for you.  We are here to cheer you on to the victory of better care and health.  Go, Go, Go, Go, Win, Win, Win, Win!  

Helpful - 0
297366 tn?1215813051
You have helped me, now I must concur with everyone else here. You have a WONDERFUL husband to care so much about you. Please do whatever needs to be done to see a new doctor and get the help you need. Don't be angry at him for trying to help you, it's just that he loves you so much. Let us all know what you find out and please take good care of yourself!
Helpful - 0
228463 tn?1216761521
Everyone above said everything that I am feeling right now.  Please take care of yourself Moki and go to the ER.  You need a new GP but a ER visit is primary if this is a relapse and with the flu it sounds probable.  The tests they may do at the ER may just lead you to a diagnosis too.

Rob you sound like a wondeful supporting husband, thanks for being so great to her!  We really appreciate your wife and want her to get better so she can come back here.

Let us know how it goes at the ER,  I will be praying for you both!
Kristin
Helpful - 0
198419 tn?1360242356
Moki - let your husband take the reigns!  It WILL be okay.  It's hard, to have others do things for you.  We know this.  Some people are completely use to it, and have done it all their lives.  But not us, not many on this forum, so we know.

It might be even harder to tell the Drs what is going on, but let him do it the best he can.

You can do this!

We are all sending strength and prayers your way to get through this important next step. . .

Be well,
SL

Helpful - 0
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