Husband Newly Diagnosed - Scared To Death - Multiple Sclerosis Message Board

happy513 · 03-04-2009, 02:26 PM

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.

MSJayhawk · 03-04-2009, 03:44 PM

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 S**** 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!!

Carol72 · 03-04-2009, 06:02 PM

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....

Snoopy61 · 03-04-2009, 06:07 PM

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.

Carol72 · 03-04-2009, 06:29 PM

Quote:

Originally Posted by Snoopy61

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...