Is my wife's MS coming back?

[kaptainriktastik]

Please forgive the long story- i really need help about if i should worry, or if i should ask her.

I'm 43, and 3 years ago remarried (she's now 38). When we got together she told me she had MS and i'd seen her have bad days- mostly it was with hand control/dropping objects and some memory issues.

Almost 2 years ago, we had a baby. She had told me that MS typically goes into remission during pregnancy, and that seems to have been true for her.

She's still nursing the baby at 20months of age (wants to ween at 2yrs). The past 2 months have seen a huge stress increase for my wife- her mother's health is in question-possibly life threatening, waiting on tests, no answers-the whole big stress deal that drags on and on.

Also my wife went to Dr. and found high Blood Pressure-She's overweight and all that, but he was a real *******-told her she probably had enlarged heart (no tests done- he just looked at her), and said was gonna stroke out or have heart attack any time, tried showing off infront of student Doctors, and really gave her the hard core treatment. She was a wreck.

Since all this has happened, Shes' gotten a cold with ear infection, but after a week of that as the cold left her, she's feeling week/feeble, dizzy/out of it, and very tired in middle of day for no reason, also feeling electric shocks from head down through left shoulder into sternum area-shocks that actually give her a jolt/spasm.

She's got a new Doctor that isn't an ***. I dont think she told him about her MS. He states that the chest pains/dizzyness are symptomatic of the ear infection and how she is crouching while nursing (the previous jerk doctor just told her she was probably having multiple heart attacks a day-wow).

My question is: could these stressors have relapsed her MS to give her the fatigue and electric shocks? How do i broach the subject with her to ask- she's not fully gotten over how the MS was affecting her career as a scientist (dropping items) -basically i think she's still in the anger phase of acceptance. She doesn't like to talk about it. Thanks, rick

[AnneLouise]

I know she doesn't want to talk about it, but not talking doesn't mean it's not there. She really needs to tell her dr about her ms.

I had shocks through my neck that felt like jolts. And I had pain and numbness down my neck, my left shoulder, elbow and into my fingers while I could feel it in my sternum. All sounds so familiar. A good massage therapist helped me, though it's still there, just not nearly as bad.

Accepted or not, doctors need to know. Maybe it's ms, maybe it's not.

And yes, she could be relapsing from all that stress.

[palmtree]

I'm glad your wife found a new doctor. That doctor's behavior was unacceptable. I would file a complaint with the state licensing board. They take these complaints very seriously. It may come back inconclusive but it will be on his record.

That's wonderful she is a scientist. I hope she can continue to work in the field for many years. She may have to find a job that she can do from home on the computer if she is starting to drop things.

You never mentioned a neurologist. Does she have one? A good neuro who's focus is MS, is really the only way to find out if these symptoms are the result of a flare. You, also never mentioned whether she is on a disease modifying treatment. If she is, she may need to find another one. Being a scientist should be an advantage in fighting this disease. She will be able to make informed decisions.

Can stress cause MS progression? You bet!

[Waydwnsouth1]

I am by far and away no doctor nor am I an expert on MS. But I can tell you that all the stress your wife is under is not good for her MS.

I wonder why she didn't tell her new doctor about her MS? The doctor should know everything about her health to treat her properly. MS patients, at times, need to be treated differently. As they told me while I was in the hospital we offer a whole set of different challenges when it comes to treatments.

You shouldn't be afraid to broach the subject with her. You are after all her caregiver not mention her husband. Perhaps she should consider a change in lifestyle if the doctor is telling her all these things.

That's just my take on things. Best of luck to you and your wife!!

[pennstater]

I would approach her saying that while you know she doesn't like to talk about MS, you are concerned for her right now. She should let her neuro know what is going on, as well as her new doctor. Maybe you can appeal to her scientific side, that the doctors need all the facts to determine best treatment/testing. And that yes, some doctors can be pompous ***, not all are.

As a side note, if she hasn't accepted her diagnosis, this will be very hard. We all go thru some denial, but when it interferes with getting proper treatment, its not healthy denial. We do all deal differently, but acceptance is needed. Acceptance doesn't mean not fighting and giving in, just that we may need to make concessions sometimes.

[kaptainriktastik]

Thanks for the responses! I'm new to all this and am sure there's tons to learn. I dont even know all the information to give you folks to help you give advice- She's not on any meds and she's not seen her neurologist since before she got pregnant. I'll probably have to discuss with her about seeing him again.

I know she's got anger about her diagnosis. She told me when early on that she'd end herself before letting somone else "wipe her butt" and i dont know where to go from there.
I'm kinda feeling like a babe in the woods about this. I have no idea what the future holds for her or my role and I don't know what it's like to be married to a person with MS. Am i going to need some basic medical training for daily caregiving? Do i just wait to learn what ways her MS will manifest itself?

[kaptainriktastik]

I dont know what happened to my earlier repsonse... Thank you all for your advice- i didn't think to mention she's not on any meds and she's not seen her neurologist since before she got pregnant.

i have absolutely no idea what the future holds for her and i. Should i look into some type of medical/caregiver training or wait until her MS manifests itself in a specific manner? thanks- rick

[Jules A]

Hi,
I like that you are thinking about the future because there isn't any way to predict what will happen and I think for those of us with a nasty disease like MS it is important not to live in a state of denial.

The good news is that many of us are able to continue working for quite some time but it is always my advice to do as much to secure your future, especially financially, sooner rather than later. Things like home modification, equipment and nursing staff are costly and disability wages are notoriously low.

Its probably rare to need specialized medical training to care for a MS patient it is usually more about self-care things like bathing and toileting.

[Kimba22]

Hi Rick,

Congratulations on your baby! Welcome to MSWorld, but very sorry to hear about your wife and her mother, too. Sorry for the long post, but I hope you find it helpful.

Infections and stress can trigger a relapse. I hope it hasn't, but sounds like that could be a very real possibililty. http://www.nationalmssociety.org/Tre...aging-Relapses. There's also something known as a pseudo exacerbation that can be brought on by any rise in body temperature (fever, external heat, and yes, even stress), but the symptoms go away once the core body temperature returns to normal. http://www.unitedspinal.org/msscene/...e-and-they-go/

Sorry to hear about the first doctor. He sounds like a pompous jerk. (Unfortunately, many of us have met them as well). But, I'm glad she found a new doctor. But, she has to let him know she has MS. Not only for any treatment she ever receives, but it will put her doctor on the spot if he learns about it from someone else. You can't blame any of them for not appreciating that.

This may have nothing to do with why your wife may not have told her doctors, but maybe it does. None of the Disease Modifying Therapies (DMT's) used for MS are approved for pregnancy or breastfeeding. http://www.nationalmssociety.org/Liv...hips/Pregnancy. Maybe she wants to avoid the possibilty of that discussion altogether right now.

It can be so hard to loose extra weight after having a baby. (and her body won't burn as many calories once she stops breastfeeding.) Add MS into the mix, and it can be even more challenging to manage one's weight. http://www.nationalmssociety.org/Liv...of-Your-Weight. I hope she will find something that works for her.

We all reach acceptance at our own pace, and you never did mention how long it's been since she's been diagnosed. But, sounds like the time has come to finally talk about it now. (And three years is also quite long enough to finally discuss it to some degree with you, her husband.) It's clear you really love her, and you can tell her that's why you are so concerned. But, I'll also share maternal heartstrings are one of the strongest feelings most moms will ever have. I have no doubt she wants to do everything she can to take of her child, both now and in the future. Ignoring her health now can cause some real problems tomorrow.

I figured she hadn't seen her neurologist for quite awhile. But she needs to see one. There can be silent MS activity going on in the brain that hasn't even presented itself yet in any new symptoms. The neurologist will order a MRI so he'll have an idea of what's happening. And, yes, he will bring up the topic of Disease Modifying Therapies. Avoidance of doctors, MRIs, and treatments can't help her. And while none of the DMT's are perfect, they are the best defense we have against relapses and disease progression right now. But this is a very personal decision, and not everyone chooses to take one. No one has a crystal ball about how their MS will progress with or without DMT's.

There are sub forums here under Medications/Treatments that discuss all the different medication used for MS. (Don't let everything you read scare you, many will only post about difficulties they are having, not about all their positive experiences). But that would be a good place to learn about them.

I know she's got anger about her diagnosis. She told me when early on that she'd end herself before letting somone else "wipe her butt" and i dont know where to go from there.
I'm kinda feeling like a babe in the woods about this. I have no idea what the future holds for her or my role and I don't know what it's like to be married to a person with MS. Am i going to need some basic medical training for daily caregiving? Do i just wait to learn what ways her MS will manifest itself?

Many people say things like your wife said, and depression is common in MS. If you ever notice it, please get her help ASAP. Let her know it's MS, not her, that's causing it. http://www.nationalmssociety.org/Sym...oms/Depression The will to live, despite a person's health or challenges, can be downright amazing.

Learning CPR is a great place to start for medical training, for everyone. Other than that, I think you can learn how to do most things she needs help with as they come up. If she suddenly had some major problems, she would need to get to the hospital. The hospital staff can show you how to help her, if she needs it. Other than that, just educating yourself about MS (and high blood pressure as well) would be great.

Besides our forums, you might also want to check out our Resource Room. Many people recommend the book MS for Dummies. There is a relationship chat in our chatroom Sunday nights at 8 pm, and a caregiver chat Wednesday night at 8 pm. You can also visit the National MS Society http://www.nationalmssociety.org/ and the Multiple Sclerosis Association of America. http://mymsaa.org/m/ If you have any more questions, feel free to ask them!

Best of luck to your family.

[kaptainriktastik]

Thanks for all the advice. I talked to her briefly about it this weekend. Ever since her mom lost her voice (turns out it vocal paralysis from chemo/rad done 24 years ago, and she's getting a trachiotomy today), my wife's been stressed and has had symptoms that now make me think her MS is back

She's had weakness, fatigue, hot flashes, memory issues, stammer/cant make the words come out, and the thing that made her go to the first jerk doctor 2 months ago in the first place is chest pain/cramps (that in retrospect sounds exactly like MS hug). While setting table last night she dropped her glass and stated "my hand just let go of the thing".

After dinner i brought it up to her and she got really upset and told me she didn't want to talk about it or think about it right now, but agreed that maybe she should think about contacting her neurologist.

[Mamabug]

Your wife's MS was never gone, just in remission. And, yes, it sounds like it is possible that she is currently not in remission. It could be called an MS flare, a relapse, an exacerbation. All mean the same thing.

I'd suggest that she go to her doctor and have that possibility explored. She may need to get on steroids for a brief time, just to get over the flare. And, yes. Stress is often a trigger for flares.

I'm glad you found us. Encourage your wife to join, too, if she's open to it. Hopefully, we could be a good support to both of you.

~ Faith

P.S.: You may wish to introduce yourself here: http://www.msworld.org/forum/forumdisplay.php?f=88, so more of us can welcome you.