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01/30/98 23:53:32
| Name: Michael J. Shafer | Email Me: Email Me | |
| Home: Robesonia, PA | Age at Onset: first attack at 32, diagnosed at 41 |
01/30/98 14:28:22
| Name: Kenneth Dallow | Email Me: Email Me | |
| Home: Woodmere NY | Age at Onset: 24 or so | Presenting Symptom: Can't Walk |
| Worst Symptom: Ditto | Best Neurologist: No one great |
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Comments: Few neurologists seem to have spirit of adventure and do not try many new treatments. Nothing may cure MS, but why be so afraid to try things that might help symptoms? |
01/29/98 23:29:00
| Name: Ron Sportsman | Email Me: Email Me | |
| Home: Renton, Washington | Age at Onset: 49 | Presenting Symptom: Optical Nuritis |
| Worst Symptom: Loss of ability to walk | Best Treatment: None. Tried it all none worked. | Best Neurologist: Dr. James Black. |
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Comments: MS took away my life as I knew it and left me unable to walk and ended taking my livelyhood. I tried all of the treatments, some to excess, Steroid IV, which nearly destroyed my life. Exacerbations continued through the use of Betaseron, Avonex gave me the feeling of having the flu 24 hours a day. I finally decided to let my body fight the disease and quit all medications and have stablized somewhat. This is not for everyone, but for me it was the best alternative. Now it's just a waiting game to see if the disease will take a turn for the worse. |
01/26/98 12:58:43
| Name: David L. Warner | Email Me: Email Me | |
| Home: Whittier, CA, near L.A. | Age at Onset: 46 years of age | Presenting Symptom: Weak Rt. Arm, Hand & Leg |
| Worst Symptom: Fatigue | Best Treatment: Methocarbamol & Naproxen | Best Neurologist: VA Medical Center, Long Beach, CA |
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Comments: As a formerly unemployed aerospace executive. My diagnosis of MS, was in a way a blessing. MS & SSDI sent me back to grad-school and gave me the new career I wanted. Of course MS has cost me a lot as well. I walk with a cane now and use a scooter, and I have had to give up hunting, skiing and dancing. Fortunately, so far my MS symptoms have not been bad. But with CPMS, the thought of remaining unmarried and alone frightens me. |
01/25/98 06:11:07
| Name: Larry McIntosh | Email Me: Email Me | |
| Home: Mississippi | Age at Onset: 37 | Presenting Symptom: Balance/Foot Drop |
| Worst Symptom: Fatigue | Best Treatment: Hard to say | Best Neurologist: Dr. Parrish |
01/24/98 05:55:56
| Name: Kim Levinson | MSRevealed | Email Me: Email Me |
| Home: Recently Washington State, Now Kansas | Age at Onset: 12 yrs. | Presenting Symptom: Dizziness & Fatigue |
| Worst Symptom: Fatigue | Best Treatment: Dexedrine & Klonopin | Best Neurologist: William Malonee, MD. |
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Comments: Diagnosed at age 30. Aware that something was not quite right at age 12 yrs. (Dizziness, Fatigue, Cognitive problems, etc...) |
01/23/98 03:21:26
| Name: Cindee | Email Me: Email Me | |
| Home: Florida | Age at Onset: 36 | Presenting Symptom: Dizziness |
| Worst Symptom: Fatigue | Best Treatment: Klonipine | Best Neurologist: Brian Steingo |
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Comments: Have been on Avonex for 9 months |
01/23/98 01:38:29
| Name: Barbara Bush | Email Me: Email Me | |
| Home: Florida | Age at Onset: 22 | Presenting Symptom: Paralyzed except for Left Arm and Hand |
| Worst Symptom: This is it, I hope | Best Treatment: NNone to date | Best Neurologist: Dr. Eileen Schwartz |
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Comments: I've had MS for 32 years and was considered RR before it was called that. I became CP after about twelve years and was forced to retire, because of MS about ten years ago. I became bedbound about six months after I had double ostemy surgery. I just take it one day at a time now. The webtv has been the best thing to happen to me. It opens the world to me. I love to write long Email letters and would love to hear from fellow MSers. |
01/18/98 22:45:29
| Name: Betty Iams | Visit Me | Email Me: Email Me |
| Home: San Diego, California US | Age at Onset: 56 | Presenting Symptom: Relatively Asymptomatic |
| Worst Symptom: Weak Right Leg | Best Treatment: Diet, Meditation | Best Neurologist: Haven't found one yet! |
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Comments: I believe MS is a lifestyle related degenerative process, related to physiological, environmental and psychological stressors, and when we bombard our immune system on a daily basis, eventually it goes awry and attacks us. I believe diet and lifestyle changes are the best treatment for MS. |
01/13/98 01:46:37
| Name: Joyce Warren | Email Me: Email Me | |
| Home: California | Age at Onset: 24yrs. | Presenting Symptom: Eyes were Blurry |
| Worst Symptom: Crippled 3X's | Best Treatment: ACTH | Best Neurologist: Dr. Bgdanoff |
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Comments: Thank you for this web page. Hope to help others thru this. |
01/13/98 00:50:18
| Name: Roz Kaplan | Email Me: Email Me | |
| Home: New York | Age at Onset: 33 | Presenting Symptom: Numbness in Feet |
| Worst Symptom: Weakness in Leg | Best Treatment: taking Avonex | Best Neurologist: Dr. Golzad |
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Comments: Don't know if Avonex is actually helping. Have been taking since October '97. I also go for physical therapy. I feel I'm doing something which is better than nothing. Wish I knew if it was actually helping. I'm hoping my symptoms will go away like all the other times. Sometimes the numbness and tingling would disappear for as long as 3 years. The longest exasperation I had was for 9 months. I'm now in my 9th month of my newest onset. I thank G-D every morning that I can still walk without any help. I'm constantly thinking about it. I hope there will be a cure someday soon. |
01/09/98 21:10:11
| Name: Leo P. Flood, Jr | Visit Me |
| Email Me: Email Me | Home: Beaumont, Texas |
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Comments: I do not have the illness, but I am in love with a lady that has MS. I am doing research so that I can work with her on this. We have been utilizing alternative treatments, ig, Chinese Herbs, Vitamins, supplements, etc. , and they appear to be doing an excellent job. I am always seeking ways to assist her, so if anyone out there have ideas please email me. We are currently seeking Board of Director Members so that we can continue our goal of establishing a facility that will combine Traditional medicine with alternative treatments. If there are others out there that are willing to work with us, please contact me. We are also seeking investor for the construction of this facility. For a picture of this facility, contact me and I will gladly email you a photo. We feel that it is time for all of us to work together to overcome this illness. IT CAN BE DONE. |
01/09/98 20:58:22
| Name: kathy | Email Me: Email Me | |
| Home: wisconsin | Age at Onset: 35 | Presenting Symptom: Numbnes on right side |
| Worst Symptom: complete Paralysis on right | Best Treatment: 5days IV Steriod | Best Neurologist: 'Havent found one yet |
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Comments: I would like to learn more about this thing called MS and I would like to learn of a Dr that can be more helpful nearby where I live. A dr. that does not make me feel like I am wasting his time and mine. |
01/09/98 08:06:01
| Name: Debs | Email Me: Email Me | |
| Home: Spring Valley, NY | Age at Onset: 31 | Presenting Symptom: Paralyzation |
| Worst Symptom: Couldn't walk | Best Treatment: Time | Best Neurologist: Dr. Markowitz |
01/09/98 01:19:38
| Name: Anne DeLong | Email Me: Email Me | |
| Home: Toledo | Age at Onset: 35 | Presenting Symptom: Leg Weakness |
| Worst Symptom: Fatigue | Best Treatment: None so far | Best Neurologist: Dr. Mary Amir |
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Comments: Just diagnosed last November 1997, was treated with Solu-Medrol. Didn't seem to do much. Taking Amantadine for fatigue. May be helping some. Still able to work three days a week. This has definitely changed my life, however. |
01/04/98 01:37:12
| Name: debbie | Email Me: Email Me | |
| Home: Pennsylvania | Age at Onset: 30 | Presenting Symptom: Vision and Balance problems |
| Worst Symptom: Vision Loss and Weakness | Best Treatment: Avonex | Best Neurologist: Stephen Mandel |
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Comments: Nice to find this site...hope to hear from some of you! |
12/31/97 00:52:48
| Name:Christina | Email Me: Email Me | |
| Home: Long Island, N Y | Age at Onset: 36 | Presenting Symptom: Severe Headaches |
| Best Treatment: Nothing helping |
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Comments: I was diagnosed by accident after a car accident. I have had a constant headache since 11-7-97 was sent for an MRI and then the diagnosis came in. One doctor says MS, the other is still requesting tests be done. I have had paralysis of the left side of my face since Jan. of this year, at which time I was told it was Bells Palseys, and I had to live with whatever happened with it! I am truly thankful to all the wonderful information that I have learned from the forum, and this website. I am scared to death of the upcoming events that will take place in my life with MS, but this really helps knowing what I get to look forward too :) I try to smile as scared as I am, but will get through it with the knowledge I am gaining. Thanks
very much,
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12/30/97 03:14:09
| Name: Cathy Evers | Email Me: Email Me | |
| Home: Gainesville, FL | Age at Onset: 42 | Presenting Symptom: Difficulty Walking, Weakness & Fatigue, "Incontinence", Difficulty with Balance |
| Worst Symptom: Weakness & Fatigue | Best Treatment: Yet to be found | Best Neurologist: ditto |
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Comments: I was just diagnosed with ms this November. What I miss most is exercising and being active. This is all new and I have a lot of questions. Your site is helpful and interesting. Helps me not to feel so alone. |
12/20/97 17:19:45
| Name: Jayne Adler | Email Me: Email Me | |
| Home: Merrick,NY | Age at Onset: 31 | Presenting Symptom: Right sided Paralysis |
| Worst Symptom: The original Paralysis, treated with IV Steroids | Best Treatment: Peptide Vaccine | Best Neurologist: Dr. Coyle @ SUNY Stony Brook |
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Comments: The peptide vaccines I received this Spring were given in a trial whose results haven't been fully analyzed as yet. If positive results from study, wider trials should follow in early '98. |