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03/11/99 06:01:08
| Name: Lisa | Email Me: Email Me | |
| Home: Missouri | Age at Onset: 33 | Presenting Symptom: Headache |
| Worst Symptom: Fatigue | Best Treatment: IVIG | Best Neurologist:(phone # & address): Robert Silvers 573-449-2141 Neurology Inc.4 |
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Comments: Very informative site. I just got out of the hospital yesterday and when the doc told me I had more lesions and that the white blood count in spinal fluid was very high again, I just wanted to scream. But we discussed the possibility of combination therapies and that is why I found you. Thanks for the info. Sincerely, |
02/23/99 15:59:02
| Name: Marianne Braun | |
| Email Me: Email Me | Age at Onset: 48 |
| Presenting Symptom: Numbness |
Worst Symptom: Labryinthitis |
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Comments: I am just starting Avonex. We will see!! |
02/19/99 22:22:06
| Name: Dixie Simmons | Visit Me | Email Me: Email Me |
| Home: central Kansas, USA | Age at Onset: 29 | Presenting Symptom: Hand Numbness |
| Worst Symptom: Paralysis | Best Treatment: Methotrexate | Best Neurologist:(phone # & address): Dr. Sharon Lynch KU MedCenter, 3900 Rainbow Dr., Kansas City, KS |
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Comments: My first onset was in 1977. I was treated with oral Steroid with the first symtoms and had no problems until 5 yrs later when I was diagnosed after numerous tests. I was R&R and went many more years with few problems and continued to work until 1995. Now Secondary Progressive, I spend a great deal of time on the internet sharing with others with MS mostly with the alt.support.mult-sclerosis newsgroup. This is the first time I recall visiting this site. It is a great one and I will be happy to refer others to it! |
02/07/99 16:43:10
| Name: Luis | Email Me: Email Me | |
| Home: Hoboken NJ | Age at Onset: 37 | Presenting Symptom: Blurry Vision, Fatigue |
| Worst Symptom: Fatigue | Best Treatment: ??????????? | Best Neurologist:(phone # & address): Bernard Gimbel MSA Center at Holy Name Hospital, Teaneck NJ |
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Comments: I've had MS since age 37 now I will be 57 so a good 20 years and.....maybe more. Fatigue, poor vision, "drunken" gait, urinary problems, sexual dysfunction and ooooh so many.
Now I use a manual w/c in my car and a power
w/c in the home or to go around town.
At the present time I have to do intermitten
catheterization at least 5 times a day and have
suffered from UTI's quite often. I'd like to hear
from other MSers. |
02/06/99 08:16:35
| Name: Larus K. Vidarsson | Email Me: Email Me | |
| Home: Gullsmari 10 | Age at Onset: 43 | Presenting Symptom: Unsteady Walk, Numbnes in hands and feet, and Spasms. |
| Worst Symptom: Hard to walk | Best Treatment: I'm using beta Interferon and Baklofen |
01/23/99 04:48:36
| Name: Roger Oosten | Email Me: Email Me | |
| Home: Florida | Age at Onset: 21 | Presenting Symptom: Trigeminal Neuralgia (TN) |
| Worst Symptom: TN | Best Treatment: Neurontin, Baclofen | Best Neurologist:(phone # & address): Dr Peter Dunn, USF, Neuro Chair |
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Comments: I noticed my first symptoms while in Navy following fever of 106 from experimental live Flu shots, Foot Drop, Leg Weakness. Presented many doctors with most (including neuro) classic symptoms for 30 yrs, Dx was Hypochondriac. Finally developed a Facial Cheek Pain like a bee sting when I talked and during eating. Still no diagnosis from doctors, dentists, etc. Finally a Seizure like Mind Numbing Hot Searing Lightning Bolt that lasted 45 minutes got me an MRI and a Dx of MS. Baclofen, Tegretol, Neurontin (up to 6.4 gms/day) had very little effect. Choice was iffy Brain surgery or radiation, had radiation four months ago and finally the meds are starting to work. Doc says it was worst case of TN he has heard of or seen in 35 yrs. Glad it is going. I can still walk but with limp from original footdrop. Will get back to horseback riding if I can reduce meds enough to get leg strength to get up. I have made it this far and I still have a long way to go. I have mixed thoughts about the long time to Dx, prior to the late 1980s there was nothing they could do for MS anyway, so I just kept doing things, working, and fun things (very active). If I would have known, there are many life experiences I might not have attempted and that would have been the real tragedy of having MS. |
01/15/99 22:48:17
| Name: Sven-Erik Schyberg | Email Me: Email Me | |
| Home: Hedesunda , Sweden | Age at Onset: 50 ! | Presenting Symptom: Optical Nerve Degeneration, Diziness, Unsteady Walk |
| Worst Symptom: Unable to move my left leg sometimes | Best Treatment: Hope to get Avonex. Know some MS-people who say they didnīt get any new symtoms when they started to take that medicine | Best Neurologist:(phone # & address): none |
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Comments: I'm a man 50 years old, who has got MS since 10 years. I still work (half time) but the last two years, I've got more difficulties with my MS. I have the Progressive type of MS. The odd thing with my MS is this...My wife has MS too. She was diagnosed in 1977, but still "her body works better than mine". I have met a lot of couples who "had met" because of their MS, but we got it both "on our own". Strange--isn't it!? I think itīs good to "surf" among MS pages and read what others write about their MS. Thanks for a good page Tom! Iīm sorry I don't write English so well, but I hope you understand. ;-)Sven-Erik with wife Lenabritt |
12/28/98 20:47:02
| Name: Richard Hayes | Email Me: Email Me | |
| Home: Dryden, Virginia | Age at Onset: 22 | Presenting Symptom: Numbness in Hand, Arm and Leg |
| Worst Symptom: Unable to Walk | Best Treatment: Bed Rest | Best Neurologist:(phone # & address): David K Garriott, Kingsport, TN |
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Comments: After 30+ years with MS,12 yrs. Trigeminal Neuralgia, along with Baclofen and Neurontin, and deep breathing, God has eased my pain and clumsiness. Stay as active as possible, and pray. Thank you so much for this chance to learn and share. |
12/24/98 04:00:45
| Name: Gene | Email Me: Email Me | |
| Age at Onset: 38 | Presenting Symptom: Just got the results |
Worst Symptom: Weakness in the Legs |
| Best Treatment: None given yet |
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Comments: Well it is good to know what the problem has been, only the last 4 years has my walking been poor. Now I know why, hopefully there is something that will help! |
12/24/98 03:26:25
| Name: Dawn | Visit Me | Email Me: Email Me |
| Home: Indiana | Age at Onset: 32 | Presenting Symptom: Numbness |
| Worst Symptom: Not being able to Feel my Leg or Foot | Best Treatment: IV Steroids | Best Neurologist:(phone # & address): Dr. Kozelka |
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Comments: Hi...I enjoyed your MS page. Halloween was my first year "anniversary" of being dx with MS...I have r/r MS and I began Copaxone last month and so far so good. I recently added my MS page to the web ring and I'm enjoying the many MS Webpages that I have been reading. |
12/17/98 05:01:09
| Name: Carol | Email Me: Email Me | |
| Home: FL. | Age at Onset: 28 | Presenting Symptom: Neck spasms, paralysis,tingling dizziness |
| Worst Symptom: paralysis of left side | Best Treatment: Avonex | Best Neurologist:(phone # & address): Dr. JoAnne Link |
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Comments: I have had MS since 1983, and for the past 4 years it has gotten worse. I am not on any medication until the doctors and I figure which road they want me to take. It does get very frustrating at times and I am hanging in there to see how it goes. If you have any suggestions, I am always interested in new ideas on how to cope with this disease! I was just informed of this sight and it seems really good. Thanks so much! Carol |
12/17/98 04:52:42
| Name: Smitty | Visit Me | Email Me: Email Me |
| Home: The Show-Me-State | Age at Onset: 44 | Presenting Symptom: Fatigue, Pain and Cognitive |
| Worst Symptom: Fatigue, pain | Best Treatment: None found so far! |
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Comments: Tom, you and I have known each other for over a year and I felt it was time to sign your guestbook (Hint). For those who don't know Tom, he has a lot of knowledge of our disease (MS). Get to know his site and him, he has a lot to offer. If you have a child and you are looking for a place to help explain some of the MS symptoms, drop by my place in the cyberworld.
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12/15/98 21:34:06
| Name: Sabrina | Visit Me | Email Me: Email Me |
| Home: Minnesota, USA | Age at Onset: Diagnosed at 27, sx since 20 | Presenting Symptom: Blurred/Double Vision, Numb Mouth and Throat |
| Worst Symptom: Fatigue, leg pain | Best Treatment: I haven't found one yet. | Best Neurologist:(phone # & address): I'd like some referrals |
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Comments: I have been Dx with MS since June 98. Since my dx I have gone very quickly downhill. I am a single, 28 yr old, Mother of a beautiful little girl, who will be 2 on December 18th. I was just told yesterday that my Long term disability through my employer was denied. I have been waiting for 4 months to get a decision on it. Now I have to appeal the decision and I don't know if I have the strength. I have been doing my best not to let my daughter see me cry, but it gets very hard at times. I know we will get through this because she is my strength. I think this website is the most informative one I've seen so far and will put a link on my page to it. Thank you for creating this web site! Happy Holidays:-) |
12/03/98 23:50:38
Name: Cathy Roff
Visit Me
Email Me: Email Me
Home: Oregon
Age at Onset: 20
Presenting Symptom:
Diplopia (Double Vision)Worst Symptom: Vertigo, flexor spasms
Best Treatment: diet & paxil0]]
Best Neurologist:(phone # & address): Dr. Roy, State College, Pa
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Comments: I was 20 when I first found out about my disability. I didn't even know what it was and had never heard of it. I was sent to a neurologist who immediately said lumbar puncture, at which time I said good bye and never saw another Dr. for 5 years. I suffred symptoms during this time, and just chalked them up to annoyances. I never kept track, and now I am sorry I never got off my butt and started keeping track of every symptom and dates. Those times would have helped me in the long run. I finally suffered from what my new neurologist called "flexor spasms", for which I still find no definition of such. My own personal definition is flexor: flexed, spasms: involuntary. My right arm would involuntarily flex to I think my max strength, and curl around starting with my wrist and fingers. These would last for approximately 40 to 60 seconds and then release. They were painful, and I had no control over when they would start, whether in my sleep or in the shower it didn't matter to the disease. This was possibly the most depressing time for me. It was this symptom which caused me to be medically discharged from the Army for which I had served 8 years. That was in 1989. Since then I have moved (once), divorced (once), remarried and given birth and suffered one relapse of the flexor spasms which were mild and the Left side, and vertigo which to me made the world spin and left me trying to stay upright. I do believe that to date (12-3-98) that one was my worst. Now I self-inject Avonex every week. This is supposed to maintain my level of disability where it stands. I cannot walk further than 1/4 mile, or run as my left leg is still suffering the effects of an earlier attack of numbness in the left side of the body. I am labeled with a 30% disability from the service. This is my story. I don't know if it will help anyone suffering from the same fate or participants of those who do, but I certainly hope it does. I want to thank the person who has this page, and disease. I am curious to know how MS affects the male of the species? Different or not? Thank you for allowing me an outlet to vent myself on. Especially today, which is shot day. Good luck to you, and keep the chin up. Wonderful page by the way. |
12/02/98 16:58:31
| Name: Enna Carvajal | Email Me: Email Me | |
| Home: Mexico City | Age at Onset: 31 | Worst Symptom: Blurred Vision |
| Best Treatment: Prednison pulses |
Best Neurologist:(phone # & address): Bruno Estaņol. Angeles Hospital, Mexico City |
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Comments: Since my MS is catalogued as Benign, I would like to share my experience with low fat diets, exercise and any alternative treatment for the MS. I am trying to do my best for coping with the future. |