New Member (my story)

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New Member

Date Joined Jan 2010
Total Posts : 6
   Posted 1/18/2010 8:33 PM (GMT -7)   
Hello everyone,
I am 43 yrs old with multiple sclersis.  My uncle was diagnosed in the 70's, my ex husband was diagnosed in 88 (my oldest daughter's father), I was diagnosed in late 89, my uncle's daughter was diagnosed in 96, and my oldest daughter 24 yrs old was was diagnosed in Feb of 08. Have you ever heard of so many people in one family with MS.  Even though my ex is not a family member.
I have tried all the A, B, C med's for MS but betaseron worked best for me.  Still have sight problems that swell, turn red and has heat from the sight.  I take 2000 mg of sol-u-medrol a month over 2 days in my port-a-cath.  I also take Efferor, Premanon, lots of vitamins.  Woman's one a day, fiber, B-6, B-12, C, D.
My hands have been numb for six years and the dr says they're not coming back.  I've always had problems with my left eye.  Actually my left side is very weak.  Pain is one of my worst symptons.  I hurt every day of my life.  Some days are worse than others but I still have pain everyday. I've even tried smoking marijuana and it did help but its against the law and my Dr. didn't like it so i stopped. I fall a good bit but my best friend helps me a lot.  She's the BEST!   (loudog)
My daughter has an MRI tomorrow.  The dr says it could be a brain infection.  She has a little girl that turns 3 next week.  She has cried all afternoon and is not saying too much to anyone.  I'm worried and scared.  I told her God wouldn't put more on her than she can take.  I no you are not suppose to question God's work but I sometimes question his intentions.
My youngest daughter is 20 and her legs are giving away on her during softball at college and I'm worried about her. Should I have her tested for MS.  Her legs hurt her too.  She's a very athelic girl.  What should I do?
trying to cope!
Terri W

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 1/19/2010 11:05 PM (GMT -7)   
Dear Terri,

Welcome to the forum, although I'm sorry for the circumstances that bring you here.

I'm so sorry that you and your family members are having to deal with so many medical issues at once. I do hope that you can get your youngest daughter to the doctor to find out what's sounds like it could be serious!

It does seem odd to have so many family members with MS; even though my own family has lots of autoimmune diseases, there's a lot of variety...lupus, Hashimoto's thyroiditis, rheumatoid arthritis, Graves disease, etc.

This is just a thought, but have you or your family members ever been tested for Lyme disease? People with Lyme disease are frequently misdiagnosed with lupus or MS first. It may be something to think about....

You and your family are in my thoughts and prayers,
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN

New Member

Date Joined Jan 2010
Total Posts : 2
   Posted 1/22/2010 4:38 PM (GMT -7)   
Hi Terri,

welcome to the forum though, like JoAnn has said, we're sorry that meeting you has come under such circumstances. It also does seem odd to have so many family members with MS since I have read that it is not hereditary.

These forums are a great place to find support and I'm inclined to write to let you know that life is not over with MS. I just joined this group, but I've had MS for 13 years. Today I feel great, but 10 years ago I had an attack that took me a year and a half to fully recover and regain my mobility and ability to walk again. But I do walk now, I even do yoga and kickboxing! there's another site where people are sharing their inspiring stories of survival and coping. I thought I would share with others!
"Life shrinks or expands in proportion to one's own courage." ~Anais Nin

New Member

Date Joined Jan 2010
Total Posts : 6
   Posted 1/24/2010 11:16 AM (GMT -7)   
Hey everyone,
I've never thought about getting tested for lymes disease. But that is a thought. My daughter is still in the hospital. Tomorrow will be a week. They did another spinal but we don't have the results yet. The doctor claims she has some psychological problems. Of course I don't understand that. I wish he would stick to being a neuroligist. She's still having very bad headaches. He claims its from stress but I just don't know. She says her head feels like its going to explode. But I still feel like it could be the tysabri shes been taking. We are both going to a dr that was located in Augusta, GA but has relocated to Greenville, SC. Her name is Dr. Mary Hughes. I was refered to her by a lady that couldn't walk and had trouble talking but she can now walk and has no problem talking.
But I am really worried about my oldest daughter. Sometimes I think she just wants to give up. But I've told her that I've been fighting this disease for almost 21 years and that is unacceptable. She has a little 3 yr old to raise. She just gets tired of her legs hurting and having those really bad headaches.
I really do want to get my youngest tested but she's a very busy girl. She's in college about 2-1/2 hrs from home. She plays softball and there season has already started. But shes very athletic. She runs over a mile a day. But I still feel like something is going on for her legs to give away.
Thanks for responding to my blog. Its really nice to hear other peoples opinion who has ms also.

Thank you,
Terri W
Darlington, SC

Regular Member

Date Joined Mar 2009
Total Posts : 90
   Posted 2/1/2010 11:02 PM (GMT -7)   
Your story really struck a chord with me.  I began experiencing MS symptoms in the months after the birth of my youngest child.  At the time I had four kids ages four and under.  Talk about scary!  Quite a few doctors blew me off, saying that I was stressed out from four kids or that I just had migraines.  It took me four years to finally get diagnosed, but now I have a great doctor who helps me as much as she can.  And I have still been able to take care of my kids, although I have had to learn how to prioritize. 
Please encourage your daughter to try finding a different doctor.  You may have to search around, but it is so worth it to find someone experienced who will take your daughter's problems seriously.  Best of luck to you and your family.

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

New Member

Date Joined Jan 2010
Total Posts : 6
   Posted 2/14/2010 10:59 PM (GMT -7)   
Thank you for everything. I'd love to no your drs name.
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