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Posted 6/21/2008 4:53 AM (GMT 0)

I am new with MS. In February I could not walk and I was numb on my right side. I thought I had a pinched nerve but boy was I wrong. My dad thought I was on some kind of drugs  I hardly take a tylenol LOL. Any way my husband had changed jobs so i had to wait for insurance but in the mean time i had a MRI on my brain it was clear. Then i took some steriods and my walking got better. Then in April i saw a neurologist that is when i told him all my symptoms like my eye itching and my shoulder and neck hurting. My balance was off alot. My right arm tingled really bad. Most of all extremely tired for no reason. He had a MRI on my spine and it showed up three lesions.  Then i went in the hospital for five days and was given high doses of steriods but sad to say the symptoms got worse my hands constantly tingled and both of my legs. Also while I was there i had a spinal tap. After a few weeks i seen the doctor on May 14,2008  and it was no doubt i have MS. I have moments when i bend my head downwards and electric shock waves will shoot through my hands and arms and chest it is really weird. The last day i have went without symptoms was May 1, 2008. Now the symptoms seem to never go away. Sometimes i have burning sensations in my legs. I have had some bladder and bowel problems. Everyday is a big challenge emotionally and physically. I take Beta shots. the shots do not bother me i am taking a low dosage right now i will be taking a full dosage by the middle of July.  My husband is a truck driver and only home on weekends and i have no family or friends where i live. I stayed with my parents for awhile but my life cannot stop i will not let MS beat me. My strength is in God i have fought alot of battles in my life and won and this one i will also win. My mind has alot to deal with but i will overcome my fear of MS. 

Posted 6/21/2008 5:18 AM (GMT 0)

Hey Survivor,

I am very sorry that you were recently diagnosed.  This is rough stuff to adjust to.  I hope the beta helps.   I know a guy that has had MS for 11 years and he has been on beta for most of that time.  He is doing pretty well.  I am really glad you found this site.  Please feel free to post with questions and concerns. 

I would like to recommend a book to you.  I helped me a great deal.  It is called MS and your feelings.   It is written by Allison Shadday.  She is a therapist and she also happens to have MS.  You can order it on Amazon or through most book stores.  This book helped me to wrap my head arround MS.  I wish you the best of luck and again welcome. 

Posted 6/21/2008 12:58 PM (GMT 0)
Hello Survivor, this is a huge adjustment especially when it seemed to come on so hard like your symptoms all the time. But I know what you're talking about and it can wear you down. The book Gretchen recommended has helped me tremendously with my dx and symptoms too. I also have many of the symptoms you're talking about and they just don't quit... if they're not fully debiillitating and I'm trying to cope thru them, then they're just there in milder ways constantly reminding me of the change in my body. This book has been one of my lifesavers because it really helps me see my relationship with the disease is manageable.

And as you pointed out, your faith in God, I too rely heavily upon that. Without that, I'd be very very lost. Praying you many more good days than rough.

Posted 6/21/2008 7:18 PM (GMT 0)
Welcome Survivor!
How great you found this site. What a great screen name. I may be presumptuous (sp?), but it does indicate, to me anyway, that you have the inner strength to cope with MS, or anything else. And you WILL survive!

This site has been a real source of comfort, understanding, and invaluable information for me. Especially as my husband still insists I don't really have MS, though three consecutive MRIs confirmed the diagnosis. I've been fortunate in not having the severe symptoms you described--my thoughts and prayers are with you.

Anyway, somewhere in this Forum I have posted info about my symptoms. Mostly fatigue (like falling asleep WHILE UP AND WALKING!!!), tingling and numbness in my extremities, double vision, and legs (very skinny too) that seem to weigh about 150 lbs. each on some days, as well as poor coordination--all thumbs and left feet, etc.
Have your treaters suggested other medications besides Beta (about which I am clueless)? I am on Copaxone, which is supposed to slow, or even halt, the progression of the MS, though the symptoms will still come and go. It involves daily self-injections, which made me nervous at first, but they're such a piece of cake that I despair more about a broken fingernail.

As for the symptoms, I am trying very hard to maintain the attitude "Well, I guess it just comes with the dinner. Like brussels sprouts. Oh well.

I hope to hear soon about how you are feeling, both physically and emotionally.

Steph57

P.S. To the moderator--I am SO going to check out that book. Thanks for the recommendation!
Posted 7/8/2008 2:38 AM (GMT 0)
Hi
How are you feeling now? I hope things have gotten a little better. I was wondering how long the fatigue was. Did you have it for years?
Posted 7/13/2008 11:47 PM (GMT 0)
Hey, the past few weeks have been a nightmare my balance is very bad i have been using a walker. The right side of my back and right stomache has been numb but hurts if i touch it also i have been having sharp pains shooting through this same area it is horrible. The tiredness is bad. Sandune you wanted to know how long i have had fatigue i am really not sure because for years i have been over weight and i blamed alot of my MS symptoms on my weight not realizing i had MS just thought i was fat and lazy even though i worked 12 hours a day form 4 years. but now i have lost 40 pounds since feb.2008 and i am extremely tried still even after losing weight. I just do what i can to make each day the best i can. i am also reading the book gretchen suggested so far it has helped. thank you it seems really positive so far great advice. praying for you all!
Posted 7/14/2008 7:50 PM (GMT 0)
Hi there, it has been awhile since I came here, and as such, it has been awhile since I have posted.  Survivor, first of all, sorry about your dx. Your symptoms seem to in many ways duplicate mine, from the sore neck and shoulders, to the electric shock feeling when you bend your head down, etc.... Once in awhile I get tingling on the in side of my knees, if I walk too much. I use to feel really foggy in the head, and kinda dizzy, etc, but I have learned that this was contributed to fatigue, and when I rested for awhile, etc - these symptoms would go away.

I am on daily injections, as I take Copaxone.  I have been on the copaxone for 8 months now. It took awhile before I started to notice any reduction in symptoms, but I am pleased to say that the symptoms have reduced in severity. Yes I still get tingly fingers, and the shock feeling from time to time - but I have also learned that alot of this is contributed to fatigue - and in my case, heat sensativity. Ive also learned that when these symptoms become excellarated due to the two above situations - once I remove them (either by getting out of the heat source - like stop washing dishes - ha!!!!, or rest, the symptoms go away, and learned that the temp symtoms cause no additonal damage.

I recently had another MRI, and learned the the number of lesions that I had have reduced somewhat, whether it is from the copaxone, or the possiblility that the body has had a chance to achieve some remyelation, not sure, but none the less, there are a few less lesions.

Your positive attitude is going to be your major contribution as to how you are going to tackle this annoying disorder.  I too do keep my head up - and continue to motorcycle, and go boating, and snow mobiling in the winter - which reminds me that at least for now, I can still do all the things that I love to do.

I did ask myself, as I am sure many of us have - why me. Well why not me - I am not any more special than anyone else - and beside, I am 53 years old, and so thankful that I got this now, instead of when I was 23....I am thankful that I am in an era that has progressed muchly with medication, and research, etc....and I am thankful that it is me and not one of my kids....

Anyhow, best of luck, and as I like to say "keep your stick on the ice" and march forward...

Have a wonderful day!

Gary

 

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