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12/06/97 19:20:43
| Name: Silvana | Email Me: Email Me | |
| Home: Sao Paulo, Brazil | Age at Onset: 38 | Presenting Symptom: Optical Neuritis, Inbalance, Dizziness, Weakness of Limbs - the whole "usual" lot |
| Worst Symptom: Fatigue, worsening all the other symptoms | Best Treatment: Solumedrol. And information |
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Comments: Yes, together we can. We can, at least, have a serious - and good humored approach -, information and learning to live with MS. |
12/04/97 17:20:12
| Name: Miljenko Pozgaj | Visit Me |
| Email Me: Email Me | Home: miljenko.pozgaj@public.srce.hr |
| Age at Onset: 37 |
12/01/97 23:10:54
| Name: Terri | Email Me: Email Me | |
| Home: Seattle area | Age at Onset: 34 | Presenting Symptom: Eye Twitching |
| Worst Symptom: Permanent Hearing Loss | Best Treatment: Avonex and knowledge | Best Neurologist: Dr. Nancy Lellelid |
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Comments: I was just diagnosed this summer with ms. It first started with an eye twitching for 3 wks. Doc told me it was stress, take time off frome work and take Valium. Then my hearing went in one ear, Dizziness, Vomiting, Headpains, and Vision troubles. That was the road to discovery of MS. I'm thankful I received the diagnosis quick compared to other stories I have heard. I am now on Avonex and doing well. I read as much as I can about this disease and the internet opens the door to even more information. I also do the MS chatrooms for support groups and would like to hear from others. |
11/18/97 04:52:03
| Name: Oneda | Email Me: Email Me | |
| Home: Denver, Colorado | Age at Onset: 40 | Presenting Symptom: Tingling, Numbness, Weakness in limbs; Nausea/Headaches/Earaches, Fatigue |
| Worst Symptom: Overwhelming Fatigue | Best Treatment: Amantadine for Nausea/Headaches/Earaches, Effexor for Depression, Bee Stings for Fatigue | Best Neurologist: Dr. Ralph Round |
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Comments: It took six years to arrive at the diagnosis of MS even after the initial MRI showed lesions on the brain, and both evoke tests were abnormal. The first neurologist said I didn't have MS because the spinal fluid was clear. He said he didn't know what was wrong with me and suggested I got to a psychiatrist for antidepressants. For six years I "winged" it... tried a variety of alternative therapies.. Acupuncture, Chiropractic, Massage/Physical Therapy, Diets, Vitamins/Herbs, etc. Various doctors led me to believe I was a mental case. After six years I reiterated my physical problems and asked for a revisit to find help. This neurologist told me that most likely I've had MS all along and that some neurologists just don't want to tell their patients they have it. It was a relief to finally know what is wrong with me, although the relief was then followed by anger at being invalidated and treated like an idiot. After working through the anger, I'm educating myself, adjusting and learning how to deal with the disease. It is tremendously helpful to have others to share with, to know that we can have a quality life while still having a debilitating disease. |
11/05/97 02:15:18
| Name: Edward A. Nole | Email Me: Email Me | |
| Home: Naugatuck,CT | Age at Onset: 27 | Presenting Symptom: Numbness, Fatigue, Leg Pain, Overall Weakness, Slurred Speech at times etc... |
| Worst Symptom: All of them!!! | Best Treatment: Solumedrol | Best Neurologist: Dr. John Muprhy in Danbury, CT. |
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Comments: I have founded the MS support System Inc. in Naugatuck, CT. Please look at the Messages in Vol3 NO.3 in the last issue Oct. 1997 under Profiles or look on the net under Berlex if you want more info call 203-723-2121 or Email Me. |
10/27/97 17:11:53
| Name: Deidra | Home: Nebraska, USA | |
| Age at Onset: 27 | Presenting Symptom: Optic Neuritis |
Worst Symptom: Now, Unable to Walk Far |
| Best Neurologist: Dr. Robert Steg |
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Comments: I'm now 37 years old, living with MS has always been something unexpected and unpredictable. The summer of 1997 has been the most difficult as I haven't been able to do what I've done and enjoyed throughout my life, that is to take a nice long walk. But it could be worse. |
10/27/97 14:01:27
| Name: Laurie Weinreich | Email Me: Email Me | |
| Home: RI | Age at Onset: 33 | Presenting Symptom: Vertigo |
| Worst Symptom: Vertigo | Best Treatment: Not under treatment | Best Neurologist: Not seeing one |
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Comments: In the summer of 1994, I had a severe attack of Vertigo. I was incapacitated for three days. After that time, I began experiencing other symptoms, extreme fatigue, numbness and tingling in legs and feet, etc. Then began the round of doctors and tests.. 11 doctors later, with only a diagnosis of Vertigo and possible MS, I have been told to get a hobby, take long walks and think about my life. I have not been to a doctor in over a year..and have basically been learning to live with the disease on my own. Everyone thinks I am crazy... they don't realize that I'd rather be crazy than have MS. I have learned to be strong and support myself... but sometimes I do question my sanity. Why can't they give me a definite diagnosis? It's not so much for me, but for the people I care about. I don't want to get worse before everyone starts to finally listen... but that may be what it takes. I could sure use some encouragement... anyone else have this type of trouble? |
10/14/97 17:19:22
| Name: Cathy Miller | Email Me: Email Me | |
| Home: Princeton, New Jersey | Age at Onset: 26 | Presenting Symptom: Numbness, Paralysis-Bilateral |
| Worst Symptom: Unable to Walk or use Hands and Fingers, Migraines, seizures | Best Treatment: Solumedrol, Sleep | Best Neurologist: Rene Gomez, MD |
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Comments: I don't know if I can be of too much help. I was diagnosed 'officially' in July/97. I went in for shoulder surgery and 4 weeks later I couldn't walk or use my hands. I was in ICU for 2 weeks. It started when I felt numbness in my abdominal area. It progressed very quickly into my legs and feet then up into my chest. I had difficulty breathing. I went to the ER, was examined and released the same day. The doctor stating that he had no idea what was wrong with me. I tried the neurologist that he refered me to who could not give me an appointment for 2 weeks. Within 2 days I could not walk or feel the majority of my body. I felt like I was going crazy. If I was really ill, this 'doctor' would see me right away, right? Luckily, my mom is seeing Dr. Rene Gomez for her Parkinson's Disease. She rushed me to his office demanding that I be seen. He sent me directly to the ER (a different hospital) and then the ICU. I almost died because I wasn't treated sooner. One piece of advice that I can give is that if one doctor does not take you seriously, or does not give you the help you think you need, find a doctor who will. You are your own advocate with this disease. In spite of all of this, I do have a positive outlook. I'm taking Avonex but I'm looking for something better. I'm tired all of the time, numb in my hands and my coordination has much to be desired. But, I am walking and I can use my hands. I look 'normal and I feel pretty good. This is so new for me. I wish I knew more. DON'T GIVE UP ON YOURSELF!! |
10/08/97 18:16:37
| Name: Amy Pauley | Email Me: Email Me | |
| Home: sandyville wv usa | Age at Onset: 31 | Presenting Symptom: Numb Legs |
| Worst Symptom: Trouble with Balance | Best Neurologist: Kuravilla, John |
10/08/97 04:22:37
| Name: Debbie | Email Me: Email Me | |
| Home: Philadelphia | Age at Onset: 35 | Presenting Symptom: Loss of Balance |
| Worst Symptom: Vision Difficulties | Best Treatment: Avonex | Best Neurologist: Steven Mandel |
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Comments: Accidentally finding this site tonight was a sheer stroke of luck. Having taken my Avonex shot about two hours ago, my computer helps to pass the time until the insomnia passes. I'll continue to read until I just can't anymore. I enjoyed " Dylan's Story." This disease pisses me off sometimes too. |
10/06/97 16:52:40
| Name: Dee Dee Ruiz | Home: Suny Alfred State College Mackenzie West B3 B1 Alfred N. Y. 14802 | |
| Age at Onset: 21 | Presenting Symptom: Lost Vision for six weeks in my left eye. |
Worst Symptom: This was my only symptom |
| Best Treatment: I refuse to take anything, If I am not in pain. |
Best Neurologist: I only have one His name is Dr. Patell |
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Comments: Im more scared now then ever this is my first time away from home, and this is the same exact month last year I was diagnosed with M.S. And It just scares me that I have this. I would like to know why and how I got It. I really don't know who's more scared my parent's or me. I would like to know If I should take the IV? I heard a lot of bad things about it and I don't want to take something that would bring it out more. Thanks for listening and I think this is great I would give you my E-mail address but this is my first semester in a computer course and I don't know my E-mail address. |
10/06/97 08:50:25
| Name: Jacques | Home: Texas | |
| Age at Onset: 27 | Presenting Symptom: Tingling In Legs Blured Vission In Left Eye |
Worst Symptom: Blured Vission After Workout |
| Best Treatment: Rest |
Best Neurologist: Dr.Leavy |
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Comments: Still Scared Of What Life Has In Store For Me. Is Anyone Taking Copaxone? It Really Hurts. |
10/05/97 23:35:14
| Name: Renee Daniels | Email Me: Email Me | |
| Home: Arizona | Age at Onset: 47 | Presenting Symptom: Fatigue, Dizzy, Weakness in Left Foot and Leg, Band-like Effect around Waist |
| Worst Symptom: Fatigue and Tingling in Hands | Best Treatment: Avonex | Best Neurologist: Lawrence Teitel,Barrows Institute, Phoenix, AZ |
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Comments: First time visitor. Thanks for all the good information. |
10/05/97 00:11:35
| Name: Karen | Email Me: Email Me | Home: N.E. Ohio, USA |
| Age at Onset: 20 (?) | Presenting Symptom: Overwhelming Fatigue |
Worst Symptom: Pain from muscle Spasms & Electrocution like Shocks, Pins & Needles, Fatigue |
| Best Treatment: medications: Baclofen, Neurontin, Diazepam, MsContin |
Best Neurologist: Drs J Flamini, L Weinberger, E Engel |
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Comments: Thanks for this wonderful site, Tom. Your tireless efforts have not been wasted! The information you provide me (and others) is so valuable. Keep up the good work! |
10/03/97 18:11:29
| Name: Anton Parra | Email Me: Email Me | |
| Home: 310-834-3837 | Age at Onset: 25 | Presenting Symptom: Weakness in Legs |
| Worst Symptom: Spasms | Best Treatment: Nortriptyline | Best Neurologist: DR. Patel |
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Comments: Does anyone know of the drug 4AP? |
09/22/97 18:03:24
| Name: Roger P. LaGoy | Email Me: Email Me | |
| Home: Massena,N.Y. | Age at Onset: 40 | Presenting Symptom: Gait disturbance |
| Worst Symptom: Fatiuge | Best Treatment: Squatic Exercise | Best Neurologist: Neil Lava M.D. |
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Comments: I particpate in the aquatuic exercise program at the SO. Saratoga YMCA every Tues. & Fri. between 12 am and 1pm it is the greatest since sliced bread!!!!! |