Anyone have MS?? Please help me...

[MyManGoofy!]

A very dear friend of mine has MS and wrote a book about it. Kim is an inspiration to all that know her. She has handled her illness with a grace that I cannot begin to imagine in myself. I do not know if you would get something from reading about her experiences or not but the book is on Amazon. It has the "Look inside" feature to read a little of the book online.

http://www.amazon.com/Minor-Inconvenience-Kim-Boileau/dp/1588987817/ref=sr_1_1?ie=UTF8&s=books&qid=1229796643&sr=1-1

 

[OhhBother]

Staci,

My DH and I learned early on not to read online MS message boards. So many people there are 1) long-time patients who did not have access to drugs for many years and 2) people with progressive rather than relapsing/remitting MS.

As I said in my earlier post, my DH has not had a relapse since his initial diagnosis in 2004. His quality of life is not impacted by his disease at all at this point. We both know there are no guarantees, but we're also not going to worry about future symptoms he may never have.

I understand how terrible you feel right now. When my DH was in the midst of his relapse/diagnosis period, he was so sick -- just like you, no strength, no energy, he had double vision so severe he couldn't drive. But the symptoms all went away with medicine.

I also know it's frustrating to wait so long to see a neurologist. After an ophthalmologist told us she suspected DH had MS, it took nearly two months to get an appointment with a neurologist. It's a terrible system, and I'm sorry you're having to wait.

Previous posters have given you great advice. It's OK to let the housework wait, to order out for dinner, to just sit back and rest.

Hang in there -- brighter days are ahead. My DH is out Christmas shopping right now -- running from store to store. We also have a WDW trip planned next month, and he'll be the one who sprints ahead to get fast passes, etc.

And earlier this year, when we were in Belize, he climbed to the top of a Mayan temple without a worry. When he was first diagnosed, I worried he'd no longer be able to climb the stairs in our house.

My point is -- life goes on, even with MS. You're at a low point right now, but there is something better ahead.

You're in my thoughts and prayers.

 

[Tosie]

Staci,

My DH and I learned early on not to read online MS message boards. So many people there are 1) long-time patients who did not have access to drugs for many years and 2) people with progressive rather than relapsing/remitting MS.

As I said in my earlier post, my DH has not had a relapse since his initial diagnosis in 2004. His quality of life is not impacted by his disease at all at this point. We both know there are no guarantees, but we're also not going to worry about future symptoms he may never have.


My point is -- life goes on, even with MS. You're at a low point right now, but there is something better ahead.

You're in my thoughts and prayers.

I (and my dh) completely concur. He does EVERYTHING he possibly can because he feels good now but that may not be the case in the future. You just never know.

Also, if you do have MS and choose to share this with people, you will most likely have a ton of people offering to help you with whatever you may need. Please please please understand that most likely, they are not offering out of pity - people love to feel needed. So take them up on their offers when you need to.

Like disneymom3, one of the hardest things my dh has to do is STOP or SLOW DOWN when he needs to. He tends to try to overdo it and pays the price later on (nothing major - just very very fatigued). Remember that world isn't going to end if the kitchen isn't clean, or the laundry isn't done, etc. Read to your kids, play a game, take a family nap - whatever you need to do to regroup and get your energy back.

It is a scary time for you right now but like everyone else said there is light at the end of the tunnel and soon you will not feel so scared.

As far as quality of life - obviously that will be different for everyone. But we know that my dh probably had his first symptoms prior to 1995 (when he first had optic neuritis) so who knows how long he's been living with MS. We're going on 14 years now with very little progression.

Hang in there!

 

[staci]

Thank you so much. Your words have helped so much.

 

[comicguy]

Staci,

I was diagonosed about 2 years ago at age 36 (symptoms included numbness and slight weakness) Last year, I started taking part in a 2 year clinical study for an oral pill to help with flare ups. I have to report that I have not had a single occurance in the last year, but there is a placebo in the study so I don't know if I am getting the drug or not (the mind can be a powerful thing) I contiue to go to WDW, I teach special needs students everyday at the HS level and I do remodeling around the home as well as shovel all of this snow in the northeast that we get in the winter.

The only thing I have to watch out for is excessive heat (have to take coolong breaks) when I am WDW during our Aug vacations(walking through and shopping in the air conditioned stores usually does it) and when working around the house in the summer. Also I have to watch that I do not get overtired, It was recommended that I work hard at getting 7 1/2 to 8 hours a sleep each night (supposedly that will help aliviate potential problems)

I would recommend seeking a neurologists the specializes in MS, also do plenty of research so you know what questions to ask and then you can also be prepared to interpret the doctor's answers better and make informed decsions.

My original neurologists left it up to me to decide if I wanted meds due to only having two occurances. But when I had the third she highly recommended that I seek meds but I was not really into injectables. I was tested and found appropriate for this clinical study that I am in, the staff is wonderful, although I have to take a day off from work periodically(every three months) for a battery of tests (blood, eye, mri, urine, physical, heart, pulmanary function, and skin) some are every 3 months, others are at 6 months and the skin is at 1 year.

Overall, it is a slow progressing diesease. It can be treated and you can have a normal life. one of the things that I read was, the older you are when you get it the less sevre your symptoms will be. Not sure how true that is but lets go with it.

Other than that I lead a pretty normal life

 

[mfd25wife]

Staci, I forgot to mention that a good example of someone famous who I think has done well is Clay Walker. He was diagnosed in '96.

 

[RUDisney]

Having seen my BFF's DH (42) be diagnosed this past summer, I can tell you from his experience that it is best for you to get into a program at the best hospital that specializes in MS. For him, that was Columbia Presbyterian in NYC. Another very good alternative on the East Coast is Johns Hopkins. I'm not sure where you live, though.

So far, he's been on a few courses of steroids and he's taking a chemotherapy treatment that seems to be working for him. No worries about this chemo... no hair loss and very little nausia, if any, from it.

He spent 2 hours snow blowing his driveway this morning in anticipation of us arriving at their house to visit. When I asked him how he was feeling, he told me that he was tired, but no more tired than he would have been before his diagnosis. The snow was deep that he was moving.

His insurance wasn't originally going to cover his visits to CP. His primary dr fought to get him the coverage he needed to go there, so remember that if you have problems with your insurance.

He's taking a hands on approach to his treatment and he'll do well with it.

I have a cousin who is in her late-50s now. She was diagnosed in her late 20s and she is doing great. You'd never know that she had MS by looking at her or by hanging out with her. It hasn't slowed her down at all. She's been aggressive in her treatment, too.

OTOH, my FIL passed away 3-4 years ago due to complications from his MS. He was like a PP's example. He was lazy about seeking treatments and about doing anything that could help himself. He willed himself to go down hill. He had other psychological problems that probably aided in his self-destruction. If it wasn't MS bringing him down, he'd have found something else to do it. KWIM? He also had diabetes, so there's a good chance that he'd have let that do him in if the MS didn't.

While it's frustrating to have to wait to see a neurologist, this disease isn't like an aggressive form of cancer that will harm you more greatly in 2-4 weeks without seeing a specialist. Everything happens for a reason and that reason may be for you to do some research on the best hospital/doctor to treat you so you go to the right place first instead of happening upon them after taking advice for a while from some quack.

I have a friend who was diagnosed with colon cancer 4 years ago. She was told that the colonoscopy got everything and to come back in a year for a repeat test. She went to Sloan Kettering for a second opinion and wound up having 12 inches of her colon removed and several months of chemo. She's been cancer free for 3 years... because she got a second opinion from a reliable source and not just a doctor that was close to her home.

 

[Cindyluwho]

One question though, I have ready about 95% of people get within 7 years of an average life span, but then, for instance, I was on a facebook 'fight ms' group last night, and all the stories sound MUCH MUCH more grim that that- more like I should hope for 5-10 years of quality life at best - which made for a very sleepless, scary night last night. I am so confused as far as all that goes..
.

I have 5 friends with MS, 3 are sisters. All of them are doing very well.

Of the sisters, the youngest was diagnosed first, about 15 years ago. She has had her bad moments, especially in her first few years after being diagnosed. I remember at one point she was using a walker, which scared the beejeesus out of her! She's doing very well at the moment. She's given up running though, her balance isn't so hot, but that changes all the time.

The oldest sister was diagnosed about 5 years after the youngest. She has quite a limp at this point but is doing well other than that.

The middle sister (my bff since 2nd grade ) has been having trouble with depression but her balance has been good lately. She was diagnosed a few years after the oldest sister.

They have all been in different clinical trials and my BFF's husband is a Dr and takes excellent care of her, bless him!

Another friend, some of you may have heard of him if you're from the Seattle area, his stage/TV name was Gertrude of J.P. Patches fame. He's an old guy!! (I say this with love ) He was diagnosed decades ago and his biggest problem at 70+ is he wears a leg brace!

In other words, many folks live out wonderful, completely full lives. Yes, there's depression and that's a bugger. And there will be times when the fatigue or loss of balance make you crazy. I'm not trying to get you to take it lightly, just to see that you can live a great life with MS. It doesn't have to stop you from anything you want to do. Of course if it will help get your DH to vacuum or do dishes more often....

 

[Amy&Dan]

Staci, I am so sorry you are going through this.

My big sister has had MS since 1999 (well thats when she was diagnosed, she probably had it for at least five years before that).

She lives a very normal life and very few people know she has it. At times she has had some serious flare ups and goes on steroid therapy when that happens. When she has flare ups, its generally because she isn't doing what her doctor tells her to do. Namely take her meds. So definitely do what your doctor tells you to do. Most people who have very severe problems don't follow doctor's orders. THey have a lot of new treatments now they didnt' have years ago.

Avoid excessive heat, my sister has to be very careful to avoid hot tubs, walking or activity in the extreme heat and can never go into a sauna. I belive her doctor also told her to avoid tanning booths.

I'll add that my sister like another poster doesn't participate in online forums or the local chapter of the MS society. I am not saying that is THE way but for her seeing people who were diagnosed before current treatments were available or paid the price for not being aggressive with their own disease made her feel worse. She finds support from family and friends and her neurologist's staff (this doctor specializes in MS) is best.

Again, I am so sorry you are faced with this. And its so frustrating you have to wait, but I agree, waiting isn't going to make you worse or have irreversible consequences.

Best of luck to you and keep us posted.

 

[Cindyluwho]

So many people in the know here on the Dis have mentioned that heat can really make the MS flare up. My BFF got this amazing "vest" thing from the MS Society. It's kind of like a fly fishing vest and it has pockets in it that you put these pliable refrigerated packs in. I am soooo not explaining this well I wish I could explain it better, but long story short it really keeps you cool! BFF can do yard work, ride her bike, etc in the heat of the summer and it doesn't even faze her! It's awesome!

 

[Whiste Pig]

I could be completely wrong, but don't they have to a MRI of your c-spine to confirm diagnosis of MS? That's what I understood the doctors telling me when they suspected I had it...

Can your primary care doctor go ahead and order any additional tests that the neurologist might need in making a diagnosis? That way you could go see the specialist in January already having results in hand?

Take care of yourself and be easy on yourself!

 

[staci]

Thank you thank you thank you to everyone here. I wish I had the words to express how much you are helping right now. I have given up for the moment on looking at other sites.. the infortmation is so overwhelming to me at this point I would rather see the neurologist first..
I had never thought about asking my GP to run any extra test first - from what I have read - isnt it a lumbar puncture or something?? I know I have not had a neurologist diagnosis yet, but I really respect and appreciate my family doctor and she pretty much said 'you need to go to them for a specific diagnosis, but I have been feeling this is my heart for awhile now. Her mom has MS so she is very knowledgeable in the area, and she has been an amazing GP (she delivered my daughter 2 years ago)... and I dont think she would have said anything had she not really felt this was true... And after all I have read online, and how I have felt starting back in 2002, progressing to now... I just am really convinced that i finally found the root cause of all my problems.
Thank you again for all your stories and kind words. This is exactly what I need while I wait in limbo...

Also, I have recently been diagnosed with asthma/allergies, after a series of doctors having a hard time with a diagnosis.... I feel a heaviness in my chest, and it is even painful at times, radiating around to my back.. Makes me feel like I cant get an adequate breath of air, but when I have had tests, my lung function is okay.... so they called it anxiety, then bronchitis, and finally asthma just two weeks ago.... Could this be related to the MS???

Big hugs and Happy Holidays to all of you. I wish I could give you all something for the peace of mind and perspective you have given me.

 

[RUDisney]

One treatment a physical therapist of mine was considering for her MS was to have all of her silver fillings removed and replaced with white fillings. Now, before you get excited about that, your insurance won't pay for you to do that. Many people go to Mexico where it's cheaper to have that done. Evidently, there is some evidence to suggest that the mercury in the fillings can exacerbate MS symptoms. I don't know if they've gone so far as to suggest that it is a cause.

Anyway, her anecdotal evidence was of a woman who was receiving PT at home. She was to the point where even getting around in her wheelchair was getting hard. She flew to Mexico and had her fillings replaced and went through whatever detox was suggested to her. She walked off the plane when she got back to PA.

Unfortunately, her return to a normal, walking life was short-lived, as she was in a horrible car accident about 6-months later and left paralyzed. She had a very good attitude about it though. Her MS symptoms didn't return and she got, in her words, 6-months of walking that she wouldn't have had if she didn't resort to this treatment option.

So, I say this to you, Staci, as an alternative, and to everyone else who has MS themselves or a loved one with it. While my information is hearsay from a physical therapist, it could be something into which it is worth looking.

 

[SueM in MN]

If you check the National Multiple Sclerosis Society, they do talk about some alternative therapies that are likely to work. They also talk about some that do not work, that they recommend not trying, including removal of fillings:
Some Complementary Approaches to Avoid

* Removal of amalgam fillings—There is no scientific evidence to connect the development or worsening of MS with dental fillings containing mercury, and therefore no reason to have those fillings removed. Although poisoning with heavy metals-such as mercury, lead, or manganese-can damage the nervous system and produce symptoms such as tremor and weakness, the damage is inflicted in a different way than occurs in MS and the process is also different.

The problem with alterative treatments like filling removal is that there is no evidence (besides people saying "I had it done") that they actually work. Because the nature of MS is for there to be flares and then get better, without studies to show whether or not the treatment is effective, there is no way of knowing whether the improvement would have happened whether or not the treatment was done.
So, if anyone suggests doing something major, ask to see the studies. In many cases, they won't have any.

The National Multiple Sclerosis Society is one of the better places to start out. They have a good page about testing, that I would suggest you read, even if you don't look at anything else on the internet.

 

[Tosie]

I could be completely wrong, but don't they have to a MRI of your c-spine to confirm diagnosis of MS? That's what I understood the doctors telling me when they suspected I had it...

My dh's original MRI was of his spine. No lesions.

Later, when they did his brain - BINGO! There they were.

His sister has them on her spine but not her brain.

 

[mfd25wife]

My MRI's are abnormal anyway so when things showed up, they had to do the lumbar puncture (tap). PCP mentioned doing it again due to current issues. They put me on steroids again, which seems to be helping right now. I'm on them for a month.

 

[mickeymedic]

Also, I have recently been diagnosed with asthma/allergies, after a series of doctors having a hard time with a diagnosis.... I feel a heaviness in my chest, and it is even painful at times, radiating around to my back.. Makes me feel like I cant get an adequate breath of air, but when I have had tests, my lung function is okay.... so they called it anxiety, then bronchitis, and finally asthma just two weeks ago.... Could this be related to the MS???

When you mention the heaviness in your chest, the first thing that comes to mind is: did your doctor do an EKG to check your heart? It sounds like you have a great PCP, so I'm sure she looked into everything thoroughly. But, as a paramedic, that's the first thing that comes to mind. With your current diagnosis, I would be willing to bet that whatever you are feeling in your chest is the result of inflamation. But if your doctor has not done an EKG, I'd ask about it the next time you are evaluated for chest tightness - just to be safe.

I can completely relate to feeling overwhelmed with some of the other websites. I'm still in search of a firm diagnosis...but MS and Lupus are high up on the list of possibilities. Some days I really want to read as much as possible and find out what other people are experiencing. And other days I can't bear to read another story of someone who is going out on permanent disability from their illness. I know there are lots of people out there leading relatively normal lives with symptoms similar to me. But they don't seem to post as much as those who are in more advanced stages of their illness. It's just a little scarey sometimes to think too far down the road.

 

[disneybound2010]

Big to you. I am surrounded by family and friends with MS. For each one it affects them completely differently.

My aunt was diagnosed with MS about 15 years ago(she is 58 now). I can remember the terror she felt and was completely lost as to how to handle it. Yet, here we are 15 years later and with the exception of a few exacerrbations here and there, she lives pretty normally. For those that don't know her, they really wouldn't even know. We just laugh and tease her about being a klutz She was on injections for some time, but now she takes some oral medications and she has recently started some physical therapy,which she says has been really good for her.

My aunt's DH also has MS. They met through a support group. He seems to have a few more problems than she does, though I have heard that it does tend to hit men harder.

One of my closest friends was diagnosed in her mid 30's. She is now almost 50 and for the most part is like my aunt. She has her good days and bad days. She goes out and lives a normal life and has even recently taken on full custody of her granddaughter(that alone should wear her out!) She does complain of the numbness and tingling on her right side,but has actually said that it has become so common place it really doesn not affect her anymore. She forgets that it is there until it is brought up(Dr, her DH asking her,etc)

The biggest thing that all of them have said is that there are two ways to look at it. They can either accept that it is a part of them, but not allow it to BECOME them or they can curl up and wait for the worst-that MAY OR MAY NOT ever happen. All of them choose to live normally and just deal as something crops up. All have a very good sense of humor about it(ya either can laugh or you can cry) and all three were diagnosed years ago,yet seem to be doing great overall!

 

[staci]

When you mention the heaviness in your chest, the first thing that comes to mind is: did your doctor do an EKG to check your heart?

Thanks for asking, yes.. I have had 2 EKG's this fall, and also an echocardiogram??? and chest xrays twice, and some pulmonary function tests... it seems like everything started out for me with breathing issues/fatigue.... and then I went in for allergy shots.. and that is when the numbness/weakness in the limbs started, along with the more painful feeling..

So it is highly likely I am just dealing with asthma/allergies on top of MS, I just feel like I dont know anything for sure right now...

Thank you so much for all of your comments and input!

 

[staci]

They can either accept that it is a part of them, but not allow it to BECOME them or they can curl up and wait for the worst-that MAY OR MAY NOT ever happen.

Thanks. I think that is what I am struggling with the most of all right now. I am a planner by nature.... I began saving for my first car when I was 12 and started babysitting.. I was working full time during college to save for a house before I even met my dh... we planned our children's births right down to the month.... I plan our Disney itineraries down to the minute, I have just always been someone who likes to have that control and this is throwing me for a loop that everything I THOUGHT I had planned out for the next 50 years may or may not happen as I expected... And I know I have to get over that, and I am sure that I will, but it is really really hard.