Anybody know anything about MS???

I am so terribly sad today. It looks like my daughter-in-law is going to be officially diagnosed with MS. She isn't even 30 and is both beautiful and brilliant. She is also mother to two of my grandkids, ages 5 and 2. This has stunned our family. We don't even know where to start, and of course, poor DIL is quietly hysterical. I'm going to go look up info on the internet, but if anybody has any experience, I'd appreciate input.

Fifty,

All I know is I think it has something to do with the nervous system. I think the binding that wraps around the nerves comes unwrapped somehow and the damage begins. Have a cousin that has it, they think.

Not a great thing to have. Hope all works out, will pray for her and your family. Blessings.

Sandpiper

I'm so sorry. This is very sad. All I can mention is Montel Williams. He was diagnosed quite a few years ago and is still going strong. I do know he works out a ton, watches what he eats and has to smoke legal, medicinal marijuana to take the pain away every morning. Sadly, it's impossible to buy anymore. He can barely get out of bed in the mornings without it. He's fighting it with everything he has and raising money for research. You might want to buy his book where he talks about it. Sorry, but I can't remember the name but I do know all of the proceeds benefit MS research. Hope this helps a little.

Dear Fifty, Sorry for the sad news.

I don't have info, but just want you to know I'll continue to pray for your DIL and the rest of the family as you face this new challenge in your lives.

I know a couple of people who've been diagnosed with MS. It's not the death sentence it used to be. They have to be careful not to do certain things, like one of them can't take showers. And they have their bad days, but the medications seem to help a lot.

Please email me and I may be able to put you in touch with someone who has it and is doing very well and has been for years. It's a guy. Don't know if that makes a difference.

I have several female friends with MS. Sue has had MS longer than my other friends and was diagnosed when she was fifteen. She's now in her late 40's. Her eye doctor diagnosed her when she went in for an eye exam. She's been on meds ever since and, in general, lives a normal life. She has a problem with fatigue, takes a nap every day and is severely allergic to scents. If a scent...perfume, smoke, etc... wafts near her, she almost immediately, has a reaction. Her speech slurs, she drags her feet because she can't lift her legs, her motor skills are severely impeded. She's now an ostrich farmer but has been a special needs elementary school teacher and a Harley Davidson mechanic and shop owner.

Two years ago Sue had breast cancer and the subsequent chemo treatments really helped her MS symptoms. Her doctor told her that was one of the strange and good side effects of chemo for MS patients.

MS affects more women than men and is considered an auto-immune disease. These days medications help tremendously. Having said all that, I'll add this...it's still MS and a rotten thing to happen to your DIL. Ya'll are in my prayers.

Thanks so much for the input, everybody. We are, naturally, worried sick. Yesterday I got on the phone with my DIL and we both ended up crying. It was just so hard. Fortunately, her numbness has subsided somewhat, but she now feels like she's just dragging her left side around. They confirmed lesions??? but she will have to wait for the neurology appointment and probable spinal tap before the final diagnosis is rendered.
In the meantime, we're researching everything we can and saying lots of prayers. She's such a tough cookie on the outside, but I can tell how terrified she is right now (yes, indeed, men do go out and marry their mother ) I'll be looking for any help anybody can give. Ironically, my own doctors just told me last week that I can't go back to work for a bit because of my own (much less severe) auto-immune disease. I was furious at first, but have come to accept that it was all for a reason I just didn't know at the time. This way, I will be available to her as needed. I'll be heading back up during her neurology appointments and tests. The best way I know how to help her is to take care of her kids for her--the effect on them is what worries her the most.
Anyway, thanks again. I feel like I need the support in order to support her!

Fifty, one thing she has going for her is you.

Your posts have love for your son and DIL pouring from them. We share you concern here and look forward to sharing blessings as well as I am very confident that marked strides will be made in the future re: MS.

I have had several friends with MS and they have been some of the most optimistic, driven people I know. It seems to me that my experience looking in shows that in order to "beat" this you have to realize the limits that MS brings and work with the napping and getting the rest you need and the proper diet and exercise and the other stuff say

"You will not stop me today." and keep on.

Keep supporting the woman, and with help from God she will be able to face this.

What a treasure to be so loved - I am glad my MIL is like that as well - she's my 2nd mom....that gift in a marriage is blessing and shows just what "good stock" her hubby comes from - which will be a help to them both in the future.

You didn't mention your Son - how's he holding up...chronic illness of a spouse can be really tough on a husband...

My sister was diagnosed with MS in her twenties and most of the time was fine but as time went by she had the numbness, eye trouble and numerous other problems. When she was 44 she would fall and lay on the floor unable to move or get up alone until someone came home to help her. The hardest part was when her mind began to go. She would forget things like how to go to the bathroom, she would flush her clothes down the toilet, walk out naked into the livingroom. I brought her to live with me hoping the climate might help her. I took her to dancing lessons for her unstableness and it seemed to help, the instructor was wonderful with her. Finally at 48 she was diagnosed with severe dementia and her mind was gone. She had to be in a wheelchair all the time and strapped into bed at night so she wouldn't hurt herself, she died by choking to death at age 50. That was in 1994. She deterierated a bit at a time. Now they have medicines that help and can keep it in remission for years. My sister took Lecithin and it seemed to help her mind. I hope all turns out for your DIL and the family.

[ August 14, 2005, 09:51 PM: Message edited by: chatty lady ]

We are presetly publishing a book by a friend of mine Suzanne Tilden-Mortimer , " Do I Know You?"
Her daughter was diagnosed with MS about the same time that her mother was diaganosed with Altzheimers , the story is a struggle that she went thorugh taking care of both her mothere and daughter . Suzy Tilden is available to take to on out forum at http://p081.ezboard.com/bthesunrisingpoetryplace
and she is a very wonderful and knowledgable person about MS
Hope this helps

Thank you all for the input. Tomorrow is my DIL's first apppointment with the top neurologist in their area. We don't really expect answers, but at least we'll get the formal testing process started. We talk most days now, and we get through it without crying, so our coping is improving, if not her condition. Thanks again.

Fifty, I have my friend's phone number and email address. He said you are welcome to call him. Email me if you're interested.

Fifty,
I am new 2 this group & went 2 look under illness, cause I have been going through a major problem.. I am fine now... But, that was where I found your post about MS..
I am not an authority, tho I feel like I know alot. My daughter was diagnosed 10 yrs ago, she was a soph in college. She is now 29... The best advice I can give u & her is 2 keep a journal. this disease affects everyone differently & its important that she have it written down, even tho we think we will never forget where that numbness was last, but we do.. Especially when there might b another problem popping up... I would like 2 take it upon myself & reassure u both that, she can live a very productive life.. Once they get her on one of the injectables, & there r 4 different types... The injectable makes the exasterbation (sp) less severe.. When my daughter has an exasterbation they always put on on IV steriods for 3-5 days & that zaps it right out of her body, then she can go back 2 living her life...I know u have a zillion questions, if I can help in any way please feel free 2 ask..
My daughter has had numerous exasterbations.
Goog Luck

Dizzy, I emailed fifty to tell her about your post. Thanks for offering to help.

How wonderful to find this post! I have been evaluated for what I thought was a sinus headache and was told it could be trigeminal neuralgia. I was sent to a neurologist and he has been doing all sorts of tests for MS. I have severe headaches, the last one lasting 18 days before the meds finally broke it. I find that I am constantly sleepy, to the point that I sleep in shifts. Sleep a few hours and awake a few hours. I also have trouble typing, I used to type close to 55 wpm, I have trouble separating pages of the newspaper, and sometimes I stumble while walking but I have attributed that to the shoes I had on. I have had an MRI, blood work and an EEG so far. My sleep study is in two weeks. I am older than the "common" age for diagnosis of MS and there is no family history. The doctor also told me to dump stress, that certainly wasn't helping. I work in the busiest Emergency Room in the state of MD, have a 7 year old daughter, and am the Vice President of the PTA at her school. What stress????

I will keep up with this thread to see how others handle this problem. I can only hope that it isn't MS, but what is causing the problems?

Melisa,

What did your MRI show? Any lesions?

I had not heard of headaches and MS. But it is differnet ofr everyone. Possibly your headaches and the sinus infection are related?

Does anyone know if slight dizziness, like vertigo (problematic in the mornings) is a symptom of MS?

I was diagnosed with MS a feww years ago and have been using an injectable ever since. I have also had vertigo before also. My parents suffered with vertigo from time to time and with medication it seemed to go away. I am sure mine will too but I was wondering about the link to MS. Anyone know?


Lynn

More and more, I'm distrusting doctors. A friend of my sister had coldness and numbness on half of her body and they did an MRI that showed nothing but she finally demanded a cervical MRI and they found a tumor that was three inches long and had wrapped around her spine, cutting off sensation and had compressed her spine in that area to the width of a ribbon. Did surgery and she has half way recovered but will never regain full use of her feet. Sometimes, we have to be our own doctor and demand things!

I hope you discover soon what is wrong. Sorry you're going through this. It can't be pleasant.

[ October 03, 2005, 10:56 AM: Message edited by: Dianne ]

Welcome Melissa,

My next door neighbor, who is only 35, has had severe prolonged headaches and tiredness for over a year now. She's been through extensive medical testing and her doctors have "found" nothing, but they think it may be trigeminal neuralgia or maybe MS. That makes you the 2nd person I've heard mention trigeminal neuralgia; my neighbor says it's an uncommon diagnosis. She had to quit her job last week because she needs to rest.

Having something that so severely impacts your life, and then not knowing what it is, seems to be the most frustrating scenario.

I wish everyone health.