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Old 03-04-2009, 01:26 PM   #1
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Unhappy Husband Newly Diagnosed - Scared To Death

Who would of thought the 1st time I would be threading or blogging would be because of Multiple Sclerosis. Welcome to modern technology. My husband was diagnosed last week with Multiple Sclerosis. There are so many questions, concerns that keep crossing my mind. And I am only the spouse - I cant even imagine what he is going through. It started 2 Fridays ago at night, he felt a tingling sensation around his eye. He blew it off. The next day (Saturday) he awoke and the left side of his face had pins and needles feeling as well as his left hand (palm and fingers only). He blew it off. Sunday he was doing things around the house and kept dropping things (a roll of paper towels, little things, etc.). He told me he felt weird, he couldnt hold on to things. But again blew it off. Monday he started walking weird with his left leg. Again, blew it off. Tuesday morning however, he had an episode where he got light headed, felt like he couldnt breath, felt like he could see people but they couldnt see him. (He said he felt like he was slipping away). He went to his boss and told his boss to take him to the emergency room. After waiting in the ER waiting room for 8 hours (9am - 5pm) he finally was brought back. They ran a CAT scan, an EKG, and a chest X-ray on him. Everything came back fine. The ER doctor then said they were going to admit him and have him meet with the Neurologist. The Neurologist came while we were still in the ER and said if he was older he would say it was a stroke but at 30 he thinks its MS. They admitted him and the following day (Wednesday) they did an MRI, and Ultrasound on the arteries in his neck, and of his heart. The DR came back later that night and said he looked at the results and his opinion is MS however the Xray tech thought maybe infection so they did a spinal tap. Friday the Dr came back and confirmed that the results from the tap came back negative and it is MS. They gave the steroids to help the symptoms for 3 days and let him go home Friday night. What we are going through now is a totally different situation then at the hospital (new set of problems). The DR applied him for some assistance with the medication since he has no insurance but it takes 3 weeks to get. My husband is very worried/scared that the MS is going to attack him while waiting for approval for the medication. I have called his DR asking for a prescription of Xanax to help him while waiting for the meds with his anxiety. But the dr said he is not an anxiety Dr and would not prescribe. The Dr he saw at the hospital is leaving the area in a couple weeks. And my husband feels alone. It takes a couple days for the Dr to return the call/ Is there any rescources as far as Dr referalls? My husbands main concern is that the MS is gonna attack while waiting to get started on the prescription. This is completely new to us and I am sorry to have rambled. But any direction or assistance would be so greatly appreciated.

 
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Old 03-04-2009, 02:44 PM   #2
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Re: Husband Newly Diagnosed - Scared To Death

Let your fears be put to rest. Your husband will be better soon- with or without medication. Over 26 years has passed since I was diagnosed; I never took any medication, including steroids. You can live a fruitful life with or without medication. I am now on disability after my 20th year of MS. I live one day at a time.

As a spouse, might I recommend that you read a little about MS. You can get equipment or reading material on loan from the MS Association or the MS Society. Take the time to inform yourself. I try to follow the Swank diet, stretch my muscles every day, and watch for my triggers (those things that can bring on an attack). Nowadays the doctor has me using passive exercise to rehabilitate my left leg which has much nerve damage.

Lifestyle changes are indeed needed, but the changes need not be drastic.

Your husband does not need any pity. Though it may be difficult to see him trying to walk with difficulty, you must let him ask for help. I realize it is an overwhelming emotion for you, but you must try to be objective. The less of a "big deal" you make it, the better your husband will be.

You live in Florida, so the heat may play a factor (each of us is different). Avoiding the heat of the day is the best thing for me to survive the summers. As a caregiver you should be aware of any overheating that can rapidly occur. I have a cooling vest that I wear outside during the summer if I must be out. I also have a cooling hat. Believe me, it works wonders!!

Your biggest concern right now is your own fear. Please know that MS is not fatal (there is a very VERY rare type that is fatal but it is EXTREMELY rare).

Please note, too, that you need to sit down with your husband and objectively decide on what things stress him out the most. Those stressful things need to be avoided. If cognitive impairment happens, you might also need to assume some things he has done. For me, balancing the check book and shopping and budgeting, my wife does. These seemingly simple tasks overwhelm me. Find out what overwhelms him.

Please keep in mind that his emotional threshold may be weakened. He may have days where he cannot stand a certain sound or cannot stand to be around people. These days, I have them, are trying. On those occasions, your husband needs a retreat within the home where he can convalesce. Even one day alone can perform miracles and allow the family to remain emotionally intact.

Multitasking for me- no longer an option. I used to multitask as a general manager of a Japanese corporation. No longer an option. My brain can only process so much and I lose focus and shut down when too many things are happening.

Driving a car- I use hand controls. These hand controls have helped me maintain my independence. If your husband has leg issues, I would recommend hand controls. I have been using them since 2002.

Stay positive and stay encouraged. I walk closely with my Creator and He helps me each day. Remember to take baby steps- BUT do not "baby" your husband. The only thing that has changed is his speed. MS is not fatal, it just slows you down. Each day can bring a multitude of blessings. In the meanwhile, I will have both of you in my prayers. You might also show your husband this web site. Guys do not always want to ask for help from their spouse, but he might ask advice here.

Welcome to the boards!!

 
Old 03-04-2009, 05:02 PM   #3
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Re: Husband Newly Diagnosed - Scared To Death

I know exactly how and your husband feel. I could have written your post 3.5 months ago when I was first diagnosed. I felt every fear and anxious thought you expressed...if you would have told me at that time that i would be writing a reply of encouragement to someone in the same boat as me, I would have told you that you were crazy. As you can read, I have come a LONG way in just that short period of time. I promise that it WILL get better, and you both WILL be able to handle this better mentally.

I echoed all your thoughts down to the anxiety of having another relapse, and the anxiety of wanting to get on that medication. I had a couple weeks delay due to sorting out insurance issues, and was beside myself wanting to get it started. I know now that the couple weeks doesn't make much of a difference.

In all honesty (and this isn't the choice everyone makes, but it was right for me), I got on anxiety and depression medication (Klonopin and Lexapro) and that helped me tremendously. A combination of the medication helping the anxiety and depression along with time has been key for me. I tell myself now that no good will come out of my worrying. I am doing all I can at the moment that is under MY control to hopefully slow the progression of disease. Worrying is NOT going to effect that outcome.

Please to continue to come here for support and information when you need it. You have found a great community of caring people to help you along your and your husband's journey....
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Old 03-04-2009, 05:07 PM   #4
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Re: Husband Newly Diagnosed - Scared To Death

happy,

I would recommend getting an appointment with a MS specialist or at least a different neurologist than the one from the ER.

When looking for Multiple Sclerosis (MS) the neurologist is looking for a positive spinal tap/lumbar pincture not a negative one. Did the MRI show lesions?

Some of your husbands symptoms sound like MS, others do not. I know this must be a very overwhelming, frustrating and confusing time but be sure your husband is dealing with MS. There are approximately 100 other conditions/disorders that have similar symptoms as MS.

If your husband really does have MS waiting 3 weeks will not make any difference. The treatments (Disease Modifying Drugs, DMDs) are meant to HOPEFULLY slow progression and HOPEFULLY decrease the amount and severity of relapses. Even on these drugs you can have a relapse and some will still progress. These drugs are not a cure and there is no gaurantee with or without them.

The DMDs DO NOT keep you from having symptoms. There are medications referred to as Symptom Management meds which can help with some symptoms.
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Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
Old 03-04-2009, 05:29 PM   #5
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Re: Husband Newly Diagnosed - Scared To Death

Quote:
Originally Posted by Snoopy61 View Post
happy,

When looking for Multiple Sclerosis (MS) the neurologist is looking for a positive spinal tap/lumbar pincture not a negative one.
I read her post as negative for other INFECTIONS, not negative for MS. Meaning they ruled out other diseases / infections so therefore putting MS on the table. I could have misread that though...
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Old 03-04-2009, 05:48 PM   #6
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Re: Husband Newly Diagnosed - Scared To Death

Quote:
Originally Posted by Carol72 View Post
I read her post as negative for other INFECTIONS, not negative for MS. Meaning they ruled out other diseases / infections so therefore putting MS on the table. I could have misread that though...
Carol, you might be right.

I am wondering if the lumbar puncture showed o-bands which would give a positive (usually) for MS. Although some with MS are still diagnosed with a negative lumbar puncture.

Happy, did the doctor do any blood work? Usually, there are several vials of blood you give to check for other things such as Lupus, Vitamin B-12 deficency and other things that can cause neurological symptoms.
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Old 03-04-2009, 08:04 PM   #7
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Re: Husband Newly Diagnosed - Scared To Death

Happy-

Welcome to our board. You will find great support and information here.

First off, both of you should relax. Not getting his medication started immediately will not make a difference. The majority of people that are diagnosed are diagnosed as relapse/remitting. Meaning your husbands exacerbation will resolve its self in time. Usually, all his symptoms will disappear. Sometimes a few hang around. Focus on taking care of the stress level, get lots of rest, and know that MS is not fatal. It's just a new path in your lives. I've been dx since Aug 06 and have not had a major relapse since. I chose to start Avonex and didn't start it until Dec 06', so that was 4 months from dx to starting meds. Many folks don't chose meds. I think one of the most important parts to managing this disease is diet and rest.

Good Luck to both of you. Hang in there. It really could be much worse than a dx of MS.

 
Old 03-05-2009, 07:35 AM   #8
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Re: Husband Newly Diagnosed - Scared To Death

Firstly I would like to thank all that responded to my post. As I had said I have never posted/blogged. I was probably just wanting to vent. It is trully amazing the goodness in people to have us in their prayers when they dont even know us. They did do all those tests when they did the lumbar puncture as well as many blood tests. Those all came back negative. For a while I was wondering if my husband was going to need a trransfusion before leaving the hospital because they were taking so much blood. Every night when I cam home from the hospital I would be on the computer every night researching and bringing it up to the dr the next morning. I even suggested sugar toxins which mimics MS bacuse we had Suishi the Friday the symptoms started. To apease us they did a stool and tested for him. However, the MRI did show lesions. There was a "a nice one" as the dr said (not so nice to us) on the right side of his brain that was causing these symptoms he was having. As well as some older ones on the left side. We have made some progress today - he called the local MS chapter and has a dr appointment this afternoon with a new neurologist. Prayers work. Thank you all. Well gotta get ready to take my wonderful husband to the DR. Thanks again for your replys.

 
Old 03-05-2009, 10:01 AM   #9
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Re: Husband Newly Diagnosed - Scared To Death

Many blessings back to you. You are moving in the right direction. Just a day at a time and you will get through this. I am glad you could 1. find results in the hospital and 2. that could get a doctor to see you.

Keep us updated and I hope your husband is feeling better. You are both still in my prayers.
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Old 03-06-2009, 08:36 AM   #10
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Re: Husband Newly Diagnosed - Scared To Death

Happy- Im sorry for what you are going through.Its a scary time in your life; however as yet another MSer, what everyone said here is true. I do have to say that I am glad you have an appt with a doctor for another evaluation though- like Snoopy said, some of the things you wrote, just dont sound very MSlike...make sure the doc that the MS society referred you to is either a very knowledgable Neurologist (ASK how many MS patients he treats) or that he is an MS specialist....too many Neuros are simply headache or parkinsons docs, with very little MS knowledge....

Also I agree that with or witbout meds right now it doesnt matter. MS doesnt happen overnight- your husband has probably been ignoring "warning signs" for years...and if he was lucky enough not to have had any, then it still doesnt appear overnight. As for lesions, number doesnt matter..and not ALL lesions are MS lesions! A migrane can leave a lesion. But, for the sake of argument, I have over 50 and I still function at 100% almost all the time!
Best luck to you. Please let us know how that appt goes....and by the way, several of the med companies (rebif and Copaxone) have guarantees that it will cost no more then 50$ a month to get the drug delivered rigth to your door! You shouldnt have to go without meds, as long as your doctor advocates for you- and it doesnt take 3 weeks....when the time is right, youll have them sooner then you think. The wait, is waiting for the nurse to come to your home to teach you how to inject....(which by the way is only scary the first week) by the time you have done it three or four times, you are a pro!
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Old 03-06-2009, 01:35 PM   #11
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Re: Husband Newly Diagnosed - Scared To Death

Thanks again everybody for your support. We met with the new Dr's office yesterday. However, we did not meet with the Dr yet. We got the paperwork signed to get all my husbands records/tests from the hospital to be transfered to the new neurologists office. The nurse was extremely personable though. She sat with us and talked with us for a while and we finally got toask questions and get some answers. We didn't even know what DMD or DMT meant but she explained it all to us. My husband has an appointment next Friday to at least help with his anxiety until he starts the MS meds. The MS society is if prescribed going to be able to assist with Betaseron. The original neuro my husband saw at the hospital wants to give him Copraxone. I have faith the new dr's will prescribe what is best for my husband. I will let you all know any new. He does feel alot better today now that the ball is finally rolling. The begining of the week we were walking into walls and getting no where. I have to say the best call that he made was the local MS chapter - he has helped us so much. Thanks again everybody. You are all in my prayers.

 
Old 03-06-2009, 03:35 PM   #12
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Re: Husband Newly Diagnosed - Scared To Death

I am happy you that you have apparently found yourself much support. I think it is great that the local MS Society is assisting you. Count your blessings and stay positive!!
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Old 03-11-2009, 09:54 AM   #13
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Re: Husband Newly Diagnosed - Scared To Death

hello this is a first for me. I have had ms since 1994 when i was young and could not be destroyed. It has left me for the most part alone until now. now i have a beautiful wife and child. I can not work and very concernd about what they will do without me able to do my job as a husband and father. scared to death.

 
Old 03-11-2009, 11:38 AM   #14
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Re: Husband Newly Diagnosed - Scared To Death

Quote:
Originally Posted by mjw656 View Post
hello this is a first for me. I have had ms since 1994 when i was young and could not be destroyed. It has left me for the most part alone until now. now i have a beautiful wife and child. I can not work and very concernd about what they will do without me able to do my job as a husband and father. scared to death.
Welcome aboard!!

I have two sons and I make sure to invest everyday of my existence into their future. I have been on disability since 2002, but this did not stop me from homeschooling my children. It benefits me (cognitive exercise) as well as them. Living daily in fear of what they will do without you only adds stress and strain to your life and their lives.

Make each day count. There are many days when I cannot function well at all, but on those days I establish baby-step-goals. I count each accomplishment as a blessing; the blessings add up very quickly. I do not know your age or family medical history, but you should know that taking proper care of your life can allow you to live a "normal" life (albeit a MS life). My paternal grandmother lived to be 98 and maternal grandfather lived to be 78. I plan to live at least until I am 88 while maintaining my independence for as long as possible (unless Raptured, then I am happily out of here!!!)

Stay strong and do not allow fear into your life. I will keep ou in my prayers.
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Eternally blessed and eternally optimistic!<><

 
Old 03-12-2009, 07:08 AM   #15
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Re: Husband Newly Diagnosed - Scared To Death

Amen to that MSJayhawk. If I learned anything is do not worry about the future. Be appreciative of the present. Enjoy each day and hold the ones you love close. Let them know you love them and appreciate them. I always thought I appreciated life and my loved ones. Until my husband got diagnosed with MS - it is amzing how much more I appreciate it. One thing I do know is the Lord said "Be anxious for nothing". I completely believe that the Lord will find a way for you. Its amazing what the power of prayer can do. Also I have learned - that with or without a diagnosis of a disorder or disease - life can be taken from any of us at any moment. There are people dying in car accidents, getting shot, etc everyday. My husband and I were talking with one of his coworkers about his situation who was diagnose with lung cancer about 3 years ago. His brother was walking about what was going to happen when he passed away from the cancer. And ironically his brother passed last year not by cancer. See only the Lord can choose when we are going to go. And MSJayhawk if the rapture came today - Adios earth Hello Heaven. Again you are all in my prayers.

 
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