Rocking the boat..

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MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/10/2009 9:07 AM (GMT -6)   
Hello everyone,
I was wondering if some of you could shed some light and advice my way.
I was diagnosed with MS in 2005, with the symptoms of vision loss in my right eye for 42 days, which a constant headache following daily. I was sent to a neurologist where he did an extensive exam and in formed me that I was needed to return to his office for a spinal tap procedure the next day to confirm his findings, in which I did and a week later I was being treated in the hospital with I.V. steroids for 4 days then was released with a step down dose of Prednisone, after a week of this medication and 3 weeks following I regained my eyesight fully. Praise The Lord!!!
I have been a patient of this neuro Dr. for the past 3 years and I have not been satisfied with the patient care I have been given over the years.
I have consulted with my regular Health Care Provider and he suggested seeing another neurologist in which I did on December 15th 2008.
The very 1st thing she asked was why aren't you on any treatment? I was confused at this point due to the previous Dr. had never suggested any treatment due to the fact I didn't have enough lesions to demand treatment at this time. I have 4 brain lesion as of my last MRI.
So she and I visited about the different treatment options and she also suggested that i have a sleep study done as well, due to the body not resting properly during the night, to heal what it had been through physically during the previous day.

I was also diagnosed back in 1994 with a Thyroid disorder as well. (Hypo) and I have been on medication ever since.
I also developed Alapecia Areatia back in 2006 with patches of hair loss all around my head, in which I seen a dermatologist for steroid injections in the scalp areas where hair loss was prevalent. After many of these treatment my hair has returned to these areas.

I am so confused about what treatment if any to take or do. I am 41 years old and have a very active 14 year old son that is involved in football and track ~ running and pole vaulting, as well as a Boy Scout working on his Eagle project. I am also a Scout Leader for his Troop.

My husband doesn't understand the fatigue that I go through some days, I have always been a go go go person. And he doesn't seem to understand that sex isn't my top priority at this point. Will he ever get the fact that I'm not the physical woman that he married 18 years ago??
Don't get me wrong I still go and do things even if i have to pay for it in fatigue the next day. I have a a lot of pain some days then there are days nothing and feeling great. I hide all this from him cause he just doesn't understand. He's the one that hasn't seen a Dr. in over 20 years. He thinks that they all out for your $.
It's a redneck thing I guess.. Hard headed and argumentative...

I feel fine as of now just a few things that have happened in the past few months that I'm not sure if it is MS related or not.. So my question is : Do I not start a treatment even if I'm doing fine or at least I think I'm doing fine, or do I Rock the boat and start on a treatment that could give me worse symptoms that I already have?

Any advice or suggestions would be appreciated and considered.
Thanks again for reading my story.
Yours Sincerely,
Chevymom confused

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/10/2009 10:19 AM (GMT -6)   

Hey Chevymom,

You are in a rough place right now.  This can be a really difficult disease without a terrific support system.  In your family, it appears that YOU are that support system (mom/wives are so strong).  It seems like your symptoms have stayed pretty mild.  I hope they continue that way for a long long time.  I am, along with the new neuro, amazed you were not started on a treatment years ago. 

Unfortunately, there will be no way you can hide this from your husband.  Even with good inurance support, the treatments can be very expensive.  They are also quite obvious as they are all injections.  That is not something you can hide!  Most likely you will be keeping a box of pre-filled syringes in your refridgerator and injecting several times a week. 

It is time to sit your husband down and have a very open talk with him.  You will need to take him to a neurology appointment as well.  He needs to understand the seriousness of this disease.  What was his response to your blindness and hospitalization?  Surely he understood that you were successfully treated and the doctors were not out to just make a buck? 

Perhaps you could all attend an MS walk.  Your scout-son could do this as a service project with his troop.  The MS society and the MSAA are always looking for volunteers.  You husband would have a chance to see people in all levels of disability in this disease.  He would also see the level of support needed. 

Obviously I am not going to tell you whether or not to "rock the boat" (well said, by the way).  We have many on here that are on treatment, and we have many that are not.  It is a real crap shoot as to what MS will do to you body. 

Welcome to the board and I hope you stay and post often.  This is an awesome place for support.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/10/2009 10:52 AM (GMT -6)   
Hi there Chevymom,

Your story is alot like mine. I started out with a diagnosis of ON and then all the fun stuff began...trips to the Neuro, many tests and lesions in the brain. LP ws normal. My Neuro feels I have mild MS and did not want to treat me w/ meds. I was just diagnosed w/ MS this past fall of '08. I did go on Amantadine for the fatigue, which I could not tolerate.
Anyway, I go back in June for another MRI and he said he might start treatment then. I have been having more vision trouble which they think is related to the MS, in the left eye. Now vertigo also...lovley, huh?

I know how frustrating it is. Many people do not understand a illness they can't 'see'. "You look great, so what are you complaining about"?...A normal response from somewone who does NOT have this disease.

My advise, keep cominh here to get the support you need when you need it, we understand. BEEN THERE DONE THAT!

Keepp insisting on answers from your Neuro. They are not God and dont know it all, we each are different in our symptoms and all, dont be to hard on HIM, BUT make him HELP YOU find the answers you are seeking.

Get in touch with a local MS Society support Group. Finf the MS Society web site and they can dirrect you to one in your area.

Blessings to you and remember, God will not give you more than you can handle. Hugs Kate

turn turn turn
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/10/2009 11:27 AM (GMT -6)   
Katie,

Thanks for the encouragement.. It surely helps knowing that I'm too not the only one with this MonSter, their are plenty others out there with this horrifying disease.
I will continue to seek the answers through my Dr. and I realize that he is only working through what God has given him to do.

Thanks again,
Another Sister with M.S.
Chevymom, AKA(Nanette) wink

MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/10/2009 11:34 AM (GMT -6)   
Gretchen1,

Thank you for your support, I think I have found the right group to be a part of...
As far as hiding these things from my husband I was referencing the pain part of it, sorry I miss led.

And yes, you are right about becoming a part of the MS walk, we are getting information now for our scouts to walk, the boy's want to walk in my honor as well as others with M.S.
Now as far as getting the hubby there well now that's another story.lol

Thanks again for your comment and support,
Another Mother with the MonSter...
Chevymom (aka) Nanette smilewinkgrin

jirish
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 1/10/2009 7:11 PM (GMT -6)   
Hi! Has your neuro ever suggested rebif or avonex injections-these are supposed to stop the progression of MS-sort of a investment in your future. Also-I take baclofen and neurontin-which help me a lot (most days) and don't seem to have side effects except dry mouth. I also am completely fatigued almost everyday but cannot sleep at night. And forget about sex-my husband really understands. My mother bought me a great book about MS which I made him read and also he has looked online so he mostly understands. That comes with time and there are still days when I am sick and he will say "what's the problem" and then I just want to scream!!! It's very hard when you look perfectly healthy and feel the opposite. There are some people that will just never understand-but I bet if sit down with your husband and explain things to him he will understand. Good luck and hope you feel better and get some answers.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/10/2009 9:00 PM (GMT -6)   

Nanette,

We are glad you are here!!!  I am glad you are just hiding the pain part.  Many of us do that :-)

One thing to remember; NO treatments STOP MS progression.  If they work for you, they will slow down the progression as much as 40 percent.  Tysabri is more like 65 percent but that one is only used if the usual Rebif, Avonex, Betaseron, or Copaxone don't work. 

Good luck with scouting and the MS walk.  Both of my sons are in scouts and have gained so much from it.  We also walk each year; it is loads of fun.  The MS society makes it like a real party!!  It is uplifting, entertaining and usually there is lots of free stuff being giving away.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/11/2009 7:11 AM (GMT -6)   
jirish said...
Hi! Has your neuro ever suggested rebif or avonex injections-these are supposed to stop the progression of MS-sort of a investment in your future. Also-I take baclofen and neurontin-which help me a lot (most days) and don't seem to have side effects except dry mouth. I also am completely fatigued almost everyday but cannot sleep at night. And forget about sex-my husband really understands. My mother bought me a great book about MS which I made him read and also he has looked online so he mostly understands. That comes with time and there are still days when I am sick and he will say "what's the problem" and then I just want to scream!!! It's very hard when you look perfectly healthy and feel the opposite. There are some people that will just never understand-but I bet if sit down with your husband and explain things to him he will understand. Good luck and hope you feel better and get some answers.


Thanks you for your support and encouragement, these things really play a big role in our lives. As we know that we are not the only ones with this horrifying disease. It helps knowing that their are other out there that can speak and help others with there everyday problems with there disease.
May God bless you and your family,
Nanette

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/12/2009 11:34 AM (GMT -6)   
Hi Chevymom,
I have had MS since the summer of 2006 and have been on Avonex, Copaxone, CellCept, Cytoxin, & Tysabri. The only one that did me any good was the Cytoxin, which I am waiting to hear from my Neuro when I am going to be allowed to start on Cytoxin once again. Like Gretchen said, there is no cure for MS. The only thing there is now is treatments that will help slow down the progression of it. Hopefully, one day, there will be a cure for it but that day is far off I think. I guess what I am trying to say is get on something, because if you don't the MS will continue to progress at the rate it wants to. If you try sometine then you will know what will not work for you. I would also think about seeing the Neuro that you went to in December of 2008, she sounds a lot better than your other one. As far as hiding the pain from your husband, I wouldn't. He needs to understand what you go through with this terrible disease and needs to support you as much as possible.
Good luck to you.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/12/2009 12:33 PM (GMT -6)   
bohuck2 said...
Hi Chevymom,
I have had MS since the summer of 2006 and have been on Avonex, Copaxone, CellCept, Cytoxin, & Tysabri. The only one that did me any good was the Cytoxin, which I am waiting to hear from my Neuro when I am going to be allowed to start on Cytoxin once again. Like Gretchen said, there is no cure for MS. The only thing there is now is treatments that will help slow down the progression of it. Hopefully, one day, there will be a cure for it but that day is far off I think. I guess what I am trying to say is get on something, because if you don't the MS will continue to progress at the rate it wants to. If you try sometine then you will know what will not work for you. I would also think about seeing the Neuro that you went to in December of 2008, she sounds a lot better than your other one. As far as hiding the pain from your husband, I wouldn't. He needs to understand what you go through with this terrible disease and needs to support you as much as possible.
Good luck to you.


Chuck,
Thanks for the information.
What where side affects from the other medications that you took? Avonex, Copaxone, Cellcept, & Tysabri, and where there any with the Cytoxin?
I guess I am just afraid of what these drug(s) will do to me I feel perfectly fine right now and have since diagnosed. Just a few things crazy every now and again. I realize that everyone is different on the medications they take but I really don't think i could handle feeling sickly all the time or every once in a while.. I just never get sick.. My son is 14 years old and has never missed a day of school in 10 years of being sick, I guess you could say he's like his mama.. As far as my husband goes we are working toward a mutual understanding on the pain situation.
Thanks again for the word of encouragement.
Yours Truly,
Chevymom AKA(Nanette)

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/13/2009 12:03 PM (GMT -6)   
Nanette,
Fortunately, I haven't had any side effects from any of the medication except for my first treatment of Avonex where I had shaking and felt like I was getting the flu but I was in bed and it didn't last very long with me. The cytoxin actually made me feel like my old self. I was up dancing for my doctor when he came in to check on me. You are right when you say that each person is different when it comes to handling pain or the side effects of medication. I get very frustrated during the daytime usually because I get so exhausted almost everyday and when I go home from work I don't have the energy to do anything. I think the main thing is to go into the treament with your head up and don't let this disease defeat you. Keep a good attitude! Good luck to you and God Bless both you and your family. Your husband, once he accepts that you have MS and he will have to help you out any way he can, will be a better man for it. My advice is to "Go For IT and let's defeat this together"!


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/13/2009 7:15 PM (GMT -6)   
bohuck2 said...
Nanette,
Fortunately, I haven't had any side effects from any of the medication except for my first treatment of Avonex where I had shaking and felt like I was getting the flu but I was in bed and it didn't last very long with me. The cytoxin actually made me feel like my old self. I was up dancing for my doctor when he came in to check on me. You are right when you say that each person is different when it comes to handling pain or the side effects of medication. I get very frustrated during the daytime usually because I get so exhausted almost everyday and when I go home from work I don't have the energy to do anything. I think the main thing is to go into the treament with your head up and don't let this disease defeat you. Keep a good attitude! Good luck to you and God Bless both you and your family. Your husband, once he accepts that you have MS and he will have to help you out any way he can, will be a better man for it. My advice is to "Go For IT and let's defeat this together"!

bohuck2,
You got that right let's go for it and fight this MonSter!
Holding my head higher and higher everyday:)
Thanks again for your thoughts and advice,
Sincerely yours,
Nanette

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/20/2009 3:35 PM (GMT -6)   
Nanette,
Haven't heard from you in a while. Hope you are doing well and still holding your head up. Has your husband finally come to realize that this wasn't something you asked for in life but you were given it so you are going to make the most of it? Good luck my friend. Keep plugging away as much as you can. We are with you!
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


MSTXMom
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/21/2009 8:30 PM (GMT -6)   
bohuck2 said...
Nanette,
Haven't heard from you in a while. Hope you are doing well and still holding your head up. Has your husband finally come to realize that this wasn't something you asked for in life but you were given it so you are going to make the most of it? Good luck my friend. Keep plugging away as much as you can. We are with you!


Chuck,
thanks for checking in on me... things are looking up here as far as my husband goes.. he's beginning to realize with the more i talk about the MS and other people how they are helping me cope that he too needs to be supportive as well. I am going this Saturday for my sleep study that the neuro dr. wanted me to do, so I'll let everyone know how that goes when I get the results... Track season has started here with the 14 yr. old son soo i guess I'll keep a truckin'.As I look forward to doing everyday ...
"Everyday is a good day, Some are just better than others" !
Nanette

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/22/2009 2:29 PM (GMT -6)   
Nanette,
Good hearing from you. Sounds as if your husband has finally realized that he should accept you having MS.
The more people understand what we go through, and the more they understand, the better it makes us feel.
Good luck at your sleep study. I had one a while back and I actually enjoyed it! I was able to sleep a lot better there than I was sleeping at home, but I would never tell my wife that. God Bless you!
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 1/23/2009 12:51 AM (GMT -6)   
Hi MSTXmom,

I did hide my MS from my family for 7 years. I was only diagnosed when I was already secondary progressive and they don't give you any drugs once you are no longer RR. My walking was already affected but as I had massive mercury poisoning (which affects balance and walking) I just said that it was from that. I only did not tell my husband cos I thought he would not cope and I wanted him to stick around while the kids were young. In fact, once I told him he has been very supportive but it is hard and you do land up just dealing with a lot of (the invisible) stuff on your own. I definitely know just how hard it is to try and keep up when you just do not have the strength to do it. He still cannot really get used to the fact that I just cant do all the things like we used to. I think it is hard on the kids too and they all deal with it differently. My Mum had MS & I too worry about the genetic link. Wish you all the best and lots of strength. :-)
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

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