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11/22/98 21:16:09
| Name: Anna K. | Email Me: Email Me | |
| Home: NY (home) | Age at Onset: 48?? | Presenting Symptom: Optic Nerve degeneration, Unstaedy Walk, Diziness, Pain, Memory |
| Worst Symptom: Memory & thinking processes | Best Treatment: Betaseron & Prendisone | Best Neurologist:(phone # & address): Have yet to find one! |
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Comments: Had to stop working at 48. Drs. at Stoney Brook Neuro said I couldn't work, had MS, then didn't have MS. This went back & forth every visit, yet I was a patient at the MS clinic, they even gave me a MS Society Social Worker. Wouldn't lay out any course of therapy, which made me feel things were hopeless. When really pushed for an answer as to why they were vascilating and defensive. As time went on with no hope in sight I got depressed. Now they said we have a whole different set of things to work on. They couldn't or wouldn't understand when my husband told them I was depressed because I was sick and not because of any original mental problems. Left them and found a good Doc. With start of course of treatment and procurment of a computer I no longer feel as helpless. |
10/28/98 22:09:13
| Name: Marvin Thomas | Email Me: Email Me | |
| Home: LaQuinta CA | Age at Onset: DX 46 Symptons in my 20s | Presenting Symptom: Incontinet - Can't Walk |
| Worst Symptom: Weakness caused by temps over 80 | Best Treatment: Avonex & 4-AP |
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Comments: My MS was very mild, although there were signs that would come and go. Until I retired from law enforcement, I studied Judo & Akido. They say I'm Secondary/Progessive. I drive and use a scooter, I still shoot at a local pistol range. |
10/27/98 21:50:17
| Name: jb smith+ | Visit Me | Email Me: Email Me |
| Age at Onset: 40 | Presenting Symptom: Distinct 1/2 full body Pain and Stiffening |
Worst Symptom: Pain, Fatigue, Cognitive |
| Best Treatment: Unknown |
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Comments: Diagnosis at 40 years, now only 1 year ago. I do not believe I just got MS at 40, although I feel fortunate that my symtoms over the years have been slight enough not to have been able to be diagnosed without MRI. My mother has MS. I hated this disease long before I was told it was also mine. Just prior to my diagnosis, I took control of my life, left an abusive marriage, purchased a home and literally "started over" at age 40. I could not believe that after all the courage I needed to muster up to move forward with my life, I would be told I have a chronic illness and would "need to determine my priorities". I had too many. One year later, I am just recently able to accept my very slight limitations and make decisions again without having to consult a MS guide. Thank you for your time. My first time public. Please excuse my style. |
10/26/98 17:56:33
| Name: Steven Gabhart | Email Me: Email Me | |
| Home: Bowling Green,Ky | Age at Onset: 15 | Presenting Symptom: Fagtigue, Numbness all Limbs, Spasticity, Vertigo, Incordination, Pain in Joints & Muscles |
| Worst Symptom:Pain | Best Treatment:Herbs |
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Comments: Don't ever give up, life is too prescious. Learn something new every day. Enjoy living, and live in the moment. Tom you have a great site, keep up the work, God bless. |
10/17/98 23:32:28
| Name: becca |
| Presenting Symptom: Numbness |
10/15/98 00:02:06
| Name: Trixie Cataline | Email Me: Email Me | |
| Age at Onset: 32 | Presenting Symptom: Paresthesia |
Worst Symptom: Memory "attacks" |
| Best Treatment: Stress-Free Environment |
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Comments: I've been lucky so far. I am still able to work, and I work a lot. I put in approx. 10hrs a day as a registered nurse in, of all palces, an Orthopedic rehab unit, I'm the manager. How twisted is that fate!? My legs ache from the moment I wake up, thru the entire day, and 1/2 way thru the night. Sometimes, the little man in my brain, you know, the one who is in charge of finding words that won't easily come, well, there are times I know, 100% KNOW, that that SOB is slacking! You all must know the feeling, the word is somewhere in your brain, the ittle man is snoozing, but you need the word now, oh, it's right there, on the tip of my tongue, it's that word, agh! As a medical professional, trying to speak to patients and thier families becomes a cruel challenge. I know they must wonder, "How is this nut going to help my loved one?" Anyway, I was wrong. The best therapy is to have a husband and daughter that love and know me. Thru my mood changes, my frustrations, my outright bitchiness, they have loved me. My husband married 1 & 1/2 years AFTER diagnosis. My mother told him that was a good time to run, no one would blame him, he told her, NO! and we'll be married 4 years on New Year's Eve. As I've said, I have been lucky. I know many of you have it so much worse, and I think of you often. I have cared for you all often, too. I have sat and held the hand, and told them that I understood their fear, because I had the same fear, and that I'd be there for them. I just needed someplace to dump some of that fear off, so I have a little more room for me and my pt.s. Thanks for listening, we will win this fight! Your friend is combat - Trix |
10/13/98 15:16:47
| Name: Dixie | |
| Email Me: Email Me | Age at Onset: 50 |
| Presenting Symptom: Vertigo/Stumbling/Fatigue |
Worst Symptom: Mobility/Gait |
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Comments: I try to keep a positive attitude and never give in or give up, except momentarily when it all comes crashing down. This site and many others offer a lot of support and answer a lot of questions that the medical profession seems at a loss to answer. I think support and not feeling all alone is essential to all of us dealing with this demon. |
10/10/98 04:35:13
| Name: stony | |
| Email Me: Email Me | Age at Onset: 34 |
| Presenting Symptom: Feet Numbness |
10/09/98 17:43:39
| Name: Mary | Home: fort Wayne Indiana |
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| Age at Onset: 44 | Presenting Symptom: Parlysis-Legs |
Worst Symptom: Extreme Fatigue |
| Best Treatment: Diet & Supplements |
Best Neurologist: Still looking |
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Comments: I was dx on my 44th birthday in July 1997. I'm walking with a cane and wc use is increasing when I go out. I find the fatigue to be the one sx that wants to beat me down, and tries to keep me down. Thank you for this great web site. God bless you all. |
10/09/98 17:10:17
| Name: Barb Hellesto | Visit Me | Email Me |
| Age at Onset: 24 | Presenting Symptom: Legs would Buckle |
Worst Symptom: Bipolar Depression |
| Best Treatment: Medication with psychiatric counseling/good friends and laughter |
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Comments: I stated age of onset, but actually diagnosis was when I was 41. Optic Nuritis, Fatigue and Loss of Balance were symptoms at the time of diagnosis. I am happy with my neurologist, in part because he works well with my internist and psychiatrist, but best? Somehow you want a neurologist that has concrete solutions. Realistically you know that is not possible. |
10/05/98 16:59:21
| Name: DRM | Email Me: Email Me | |
| Home: Ohio | Age at Onset: 40 | Presenting Symptom: Blurred Vision/Slurred Speedh |
| Worst Symptom: Fatigue | Best Treatment: Bi-monthly Steroids and weekly Chemo - Methotrexate; only thing thus far | Best Neurologist:(phone # & address): Dr. Bianca Guttman; formerly with Cleveland Clinic - now at Buffalo General |
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Comments: The extreme fatigue is a definite challenge - especially with trying to keep up with an elementary school-aged child. Enjoy email penpalling. Thanks for all your work on this site! |
09/30/98 23:03:08
| Name: Amanda | ||
| Home: Media, PA | Age at Onset: 22 | Presenting Symptom: Double vision |
| Worst Symptom: Vision, Spasticity | Best Treatment: Avonex, Baclofen | Best Neurologist:(phone # & address): Dr. Stephen Lewis, Abington PA |
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Comments: Great website! I am going on 23, and I was diagnosed in June after months of Double Vision. I tried IV Steroids, but they didn't work. My symptoms are relatively mild, but I'm worried about what could happen down the road. I'm still experiencing the side effects of the Avonex after 3 months, but I manage. I am a full-time doctoral student and am very busy, but I get a lot of support from family and friends. If there's anyone out there who is in a similar situation, please email me! Good luck to all. |
09/28/98 15:59:02
| Name: Norma | Email Me: Email Me | |
| Home: Virginia | Age at Onset: 28, in 1984 | Presenting Symptom: Optic Neuritis (Crossed Eyes, Double Vision) |
| Worst Symptom: Fatigue, Paralaysis | Best Neurologist:(phone # & address): Gordon Burch, Roanoke, Va. |
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Comments: I was diagnosed in April 1984, and I've had my good days and bad days. I use a cane to walk, but there are times when I need a wheelchair. I've tried tons of Steroids, Avonex, Betaseron, baclofen, etc., etc. I also have Scleroderma and numerous AutoImmune diseases. I take each day as it comes and deal with the present. I've had polio and this contributes to my walking poorly too. I'm a very upbeat happy person who trusts in God to make it through this world. I'm married to the world's best husband, he's a minister. We have no children, but we love children. I love people and my husband is the most outgoing person that I know. I have great support and am not ashamed to admit my diseases to anyone. I like to educate others about what these diseases are about. I had an Aunt and two sisters with MS. God bless all of you, my fellow MSers! |
09/27/98 20:52:24
| Name: Dennis Lien | Email Me: Email Me | |
| Home: home | Age at Onset: 44 | Presenting Symptom: No Use of Hands |
| Worst Symptom: Can't move at all | Best Treatment: None |
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Comments: You seem so alone my wife of 27 yrs told me, she could not be married to someone who couldn't get around. She moved me out of our home that I worked so hard for took every thing. I thought if I signed over everything to her she would let me come home. But that didn't come to pass. I gave up, so the M.S. realy took a hold of me, so now all I do is watch tv. I still love her guess I must be crazy too. I have heard this same thing happens a lot. I know if it would have been her, I would have done everything for her. |
09/26/98 08:13:35
| Name: Trina | Email Me | |
| Home: Vancouver, British Columbia | Age at Onset: 22 | Presenting Symptom: Numbness in different areas in each attack |
| Worst Symptom: Fatigue & not walking in both legs properly | Best Treatment: Acupuncture, Chiropractor + Vitamins | Best Neurologist:(phone # & address): S.A.Hashimoto 604-874-1513 Vancouver, British Columbia |
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Comments: I'm so glad I have found this page! Sometimes talking with family, friends and others who don't put up with this disease really can't help with the pain and frustration we all go through. Let's not forget who has listened and shared their hearts with us, whoever they maybe! Thank-you to you all! If anyone has a pet, have you notice no matter how far along your MS has gone they will love you unconditionally? They don't look at your disabilty, they only see the person! |
09/22/98 03:59:49
| Name: Teddy Hiteman | Email Me: Email Me | |
| Home: Las Vegas, NV | Age at Onset: 39 | Presenting Symptom: Weakness in Extremeties |
| Worst Symptom: fatigue | Best Treatment: still looking! | Best Neurologist:(phone # & address): Dr. Steven Glyman(702) 731-9110 |
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Comments: I have CPMS and have decided to not take any of the ABC drugs. I seem to experince new signs and symptoms at a fairly rapid pace... but my spirits are up....... Been there, done that, don't remember a thing!! |
09/15/98 04:17:31
| Name: Tara | Email Me: Email Me | |
| Home: Georgia | Age at Onset: 24 | Presenting Symptom: Numbness in left hand which continued through the left side of my body |
| Worst Symptom: Numbness from my Neck to my Feet | Best Treatment: Perseverance and three kids |
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Comments: It is amazing what you can go through in your life and still seem to survive when you know you have three wonderful children and loving and caring husband who count on you to be there everyday. I think they have been my best medicine to date. |