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Old 10-04-2012, 06:49 PM   #1
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AmyNick HB User
Help please!!!!!!!!!

Hi my husband who is 29 was recently diagnosed with ms. I am so scared! His symptoms are balance and left leg weakness. They started in may was treated with steroids and put on copaxone. He is now in the hospital again for a relapse 5 months after diagnosed. Im so scared and angry and feel like im going to lose it! His symptoms aren't as bad as last time. He's been on copaxine for month and a half. All I keep reading is hes male and his balance and leg weakness are considered a sign his Ms is worse than a female with numbness or tingling. Is this true?? No one understands how I feel! I either get told you can't change it such it up and live your life or wow that's so sad im sorry to hear! It honestly freaks me out even more! He lost his job and being in the hospital he's starTing to have a breakdown. Please im.so scared and have no one!!! Hes always been fit and active and I just don't know where this leaves us! He had relapse remitting. If he is having a attack already does he have a more severe case? I know it takes 6/9 months for copaxone to work. PLEASE CAN ANYONE HELP ME FIND MY MIND AND COMFORT ME????????

 
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Old 10-04-2012, 07:26 PM   #2
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Re: Help please!!!!!!!!!

I'm a Christian and I want to pray for you and your husband.

One thing I know about ms is that every case is very different. So be careful doing too much comparison. How it comes and goes or acts isn't the same. If he has relapsing remitting--and has copaxone on the way to his aid--that's a great start. Lots of folks have another attack before the meds kick in. You are right that the 6 month mark is more magical than others but charts show assistance coming from the meds sooner...even at 2-3 months...but 6+ gets it in the zone.

There are ways to try to fight back. Some are different diet plans...allergy related...and available in books like the Swank Diet. The Best Bet Diet takes it a step further and eliminates allergen foods--gluten/wheat, milk, etc. this foods that most people show allergies to. There are people whom this diet worked wonders for. No guarantees but its just food...so I'm trying it. I've had good results right now...but it's only been a short term change. Could be the disease remitting right now. It's worth it to me to fight back and take matters into my own hands in that regard.

I'm taking lots of vitamins, omega 3 oils, b12, d...things I'm low on...so you can check that route as well...what are his levels.

Don't read too much into the outlook of other folks and their results. This thing is tough. Your emotions are on target for what you are going through.

I wish I could give you an actual hug. I know it's scary. It's crazy.

For some additional perspective...it's not a diagnosis of terminal cancer or a car wreck that ends things suddenly. I had a friend whose mom had stage 4 cancer--was getting ready to fight it and died that week. So I'm taking the life is short for lots of folks approach. I have a chance to love those I love...choose what's important...and keep things in perspective.

I hope this gives you some hope and helps in a small way...or a larger one.

You are not alone...and there are things I think you can do to help!!!

Teresa

Last edited by Administrator; 10-05-2012 at 08:51 AM.

 
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Old 10-04-2012, 08:16 PM   #3
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Re: Help please!!!!!!!!!

Welcome.

let not your heart be troubled nor your anger burden you. MS is not fatal. I just had my 35th anniversary with the disease and I can tell you that each day can be a blessing whether the day is good or bad.

Would I rather be healthy? Sure. No one wants MS, BUT MS does not end our lives. I went on to marry, have two sons who are healthy and 22 years and 13 years old and both are in college. MS may limit our physical abilities or it may not. No two MSers have the same problems though the similarities might exist.

It is important that you show NO PITY. He has lost his job, but this does not have to be the end. After 20 years I finally had to take disability. You might need to do the same. You need to be strong and calm- you need to be an anchor.

Your fear and anxiety can affect him and worsen his condition or cause a relapse or new symptoms to present.

You might look at SSDI or you might look at job re-training. Her in Kansas the Social Rehabilitation Services will pay for an education at the university, your living costs, and help place you in a job. You might consider this and see what is available there.

Life with MS is not easy. As to those who progress to a progressive MS or are progressive, the statistics are against males. I have been progressive since I was at least 14 years old. Now, at 49, I count my daily blessings and live one day at a time.

The husband you knew before the diagnosis is still the same guy. You should not change anything. He may need to learn to delegate some chores to others. I would encourage him to visit this board as well as looking at a local support group. If you have a church or synagogue, seek some spiritual and moral support.

Please do not make MS a bigger issue than it is. If you allow MS to dictate your life, the joy and blessings are harder to find.

I will keep you and your husband in my prayers. Please know that you have a long life ahead of you and neither you nor your husband is alone.
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MS onset circa 1977
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Old 10-05-2012, 03:50 AM   #4
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Re: Help please!!!!!!!!!

Hi Amy, first of all breathe.
Why did your husband lose his job? No one loses their job when they go into the hospital, its illegal for him to be fired over health problems. He had to have lost his job from something unrelated? Also, steroids are only 3-5 days; if he is in the hospital longer, he will qualify for short term disability through the law.

Secondly, its MS. Its not a terminal illness. 450,000 people in the USA alone have been diagnosed with MS and 85% of us have relapsing/remitting- which is the best type to have. Reading your post, is sounds like YOU are more upset about this than he is. Im sure he is upset and scared. We all were at the beginning and a first relapse, especially if he was doing well prior, is especially scary; however it is not life threatening. Balance and leg weakness are not the worst things to have to deal with. Many MSers deal with so much worse, and people with terminal illnesses wish they had balance and leg weakness problems. Its all in how you handle this, and view it. Steroids can make people crazy! Its quite possible if he is laying there with an infusion of SoluMedrol running into his arm that he is feeling the affects of the steroids- and thats a horrible feeling. For some people, you want to chew your arm off! This passes, when the steroids are stopped.....so, if this is what is causing his immediate stress, expect it to dissappate as soon as they stop the infusions, or within a few days after.

Your husband is okay to work. And, he is still the same man you married. Unless you view him differently now? IF he were to read this post you wrote, would it hurt him? Or would he agree with you? Most men do not do well with sickness to begin with...you can help him by being educated about the disease and supporting him. Realizing his triggers and knowing when its time to slow down and cut him some slack. Right now, is one of those times.

Look into the MS society in your area and check out some actual support groups. I think youll be surprised to see how many people live perfectly normal lives and get by having MS. I have had MS for years- I work full time, have 3 kids, just finished graduate school and am writing my dissertation for post graduate courses now. And, I have 70+ lesions (much more than the average person) all over my brain and brain stem. IF I can push through- than its possible for anyone to push through. It really is all in the attitude.

Instead of worrying, be proactive! Instead of thinking about what might happen, look at what did happen. Can he still see? Walk? Put his arms around you? Feed himself? Go to the bathroom himself? These are blessings not to be taken for granted.

There is no guarantee that he will get worse- this could be the only relapse he ever has. The Copaxone may not be a strong enough drug for him and at his next MRI they will probably decide that based on radiographical changes....but hes on the lowest of the DMDs. He has plenty more to explore if this one isnt working. AND, as you know, it could start working anytime. I also had a major relapse on month 5 of my first DMD- terrifying. I woke up 75% blind with optical neuritis in both eyes. Ive never been so glad to be on steroids for a week- my vision returned, the pain receded- and everything went back to normal. Yes, I was lucky.....but i stayed on the same drug for 6 more years and never had another relapse. Your husband might be lucky too.

Breathe. Being upset isnt going to change anything for either of you, but your attitude and how you fight this thing will make all the difference in the world..
Hang in there...
Nikki
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Old 10-05-2012, 06:42 PM   #5
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Re: Help please!!!!!!!!!

Thank you so much for you're replys. I def needed it! I am a Christian also but suffer from anxiety. Sometimes I get way ahead of myself and go on freak out mode! I know it could be so much worse and I should be thankful for what we have. I cannot handle things when I cannot be in control. Im alot calmer now today. I love my husband with all my heart and I just hate to see him suffer. We have been through hell already. He also suffers from neurofibromatosis. It causes tumors to grow on nerves. There is no medication and surgery is often impossible. We were actually featured on the tlc channel for a documentary. I suffer from fibermyalgia and I had a hyterectomy for cervical cancer. I am just overwhelmed with everything that we have been through. This is def a learning process! I am not giving up I've always been a fighter. I am way more upset than my husband is. But ive pulled myself together. I will always be his backbone. I will never give up. I will never let him give up. So thank you. Thank you for listening to my melt down and being there for me without knowing me. I needed it.

 
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Old 10-05-2012, 07:22 PM   #6
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Re: Help please!!!!!!!!!

No worries. Your plate is certainly full already to add MS into the fray.

Please be careful with your anxiety because uncontrolled, anxiety can cause MS like symptoms to present. If you need help, I would certainly ask your doctor. Often times a counselor will teach you to focus on something else to distract you from the cause of the anxiety and thereby limiting its damage.

No one wants MS nor to have to suffer. Your anger only harms yourself because there is nothing which you can blame for your predicament. Our corruptible bodies are breakable and are limited. I do not plan to use mine long-term because when I am done with it I am looking for an incorruptible body

Please come here as often as you need. There is also a fibro board too.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 10-06-2012, 09:34 PM   #7
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Re: Help please!!!!!!!!!

Quote:
Originally Posted by AmyNick View Post
Thank you so much for you're replys. I def needed it! I am a Christian also but suffer from anxiety. Sometimes I get way ahead of myself and go on freak out mode! I know it could be so much worse and I should be thankful for what we have. I cannot handle things when I cannot be in control. Im alot calmer now today. I love my husband with all my heart and I just hate to see him suffer. We have been through hell already. He also suffers from neurofibromatosis. It causes tumors to grow on nerves. There is no medication and surgery is often impossible. We were actually featured on the tlc channel for a documentary. I suffer from fibermyalgia and I had a hyterectomy for cervical cancer. I am just overwhelmed with everything that we have been through. This is def a learning process! I am not giving up I've always been a fighter. I am way more upset than my husband is. But ive pulled myself together. I will always be his backbone. I will never give up. I will never let him give up. So thank you. Thank you for listening to my melt down and being there for me without knowing me. I needed it.

 
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