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07/07/99 20:52:08
| Name: HG | Email Me: Email Me | |
| Home: Sealy, TX | Age at Onset: 35 | Presenting Symptom: Numbness in hand, Headaches, drag of left leg, Neck Pain, and Virtigo |
| Worst Symptom: loss of vision in right eye | Best Treatment: Avonex | Best Neurologist:(phone # & address): Jose Diaz |
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Comments: Thank you for having this information page. Not only do I read your information. But, so does my family. It is so hard for families of MSers to understand all the symptoms, and you have made it possible for them to read and to understand. We are a family of four. Two girls, my husband, and myself. Thank you and never stop fighting. Because, we who have MS will always be a family |
07/07/99 11:57:41
| Name: Dick Tresidder | Email Me: Email Me | |
| Home: Cayman Islands | Age at Onset: 30 | Presenting Symptom: left leg weakness |
| Worst Symptom: pain | Best Treatment: warmth | Best Neurologist:(phone # & address): none |
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Comments: I've had the 'slow progressive' now for about 20 years but still 'walk' and work. Heat doesn't bother me but cold does (everyone here loves A/C except me). |
06/12/99 23:23:47
| Name: D. McNair | Email Me: Email Me | |
| Home: Texas | Age at Onset: 52 | Presenting Symptom: Tiggling Legs |
| Worst Symptom: Dizziness | Best Treatment: Steroids AND Time | Best Neurologist:(phone # & address): Woodfin(214)345-1299 Dallas, Texas |
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Comments: M.S. is in remission, I'm out of work and have COBRA insurance. How do I get a job to cover existing health. This is one of the main reasons I have for not taking one of the A, B, or C drugs. I couldn't afford it without insurance. |
06/10/99 15:05:39
| Name: Mike Field | Email Me: Email Me | |
| Home: Hamilton,Ontario | Age at Onset: 53 | Presenting Symptom: Balance, Vision |
| Worst Symptom: Fatigue | Best Treatment: Beta Seron | Best Neurologist:(phone # & address): Dr. Raymond Lo 905-521 2100. Mcmaster Medical Centre. |
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Comments: Due to the extreme fatigue and very poor balance, I had to go on long term disability in January of this year. I had a very responsible job with the Hamilton SPCA, but could not cope with the demands and long hours of my job. I am not a quitter but could no longer do what had to be done. I was Manager of comunity service and manager of all fundraising activities for the shelter. I had been there for 10 years. Prior I was employed by a local radio station as co-host of the morning show. I have found it difficult to now be at home. I try to do as much around the home that I can. Dr. Lo said I will not die from MS because of my age. What he didn't say was how miserable having MS would make my life. I am trying to cope the best that I can with rest periods throughout the day. Thanks for your information on the web site. I will visit often. |
05/31/99 20:55:38
| Name: Sharon | Email Me: Email Me | |
| Home: Dayton, Ohio | Age at Onset: 21....38 | Presenting Symptom: Numbness in Leg |
| Worst Symptom: Double Vision | Best Treatment: Avonex | Best Neurologist:(phone # & address): what?? |
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Comments: This is the BEST MS SITE EVER!!!!! |
05/17/99 02:07:07
| Name: Robin | Multiple Sclerosis Central | Email Me: Email Me |
| From: (Home): RI | ||
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Comments: I think that it's so important to maintain a positive attitude with this disease. I was formally diagnosed in 1997 and have found that talking with others going through the same thing to be a godsend. |
05/12/99 21:44:54
| Name: Lisa Schultz | Email Me: Email Me | |
| Home: Park Forest, IL | Age at Onset: 25 | Presenting Symptom: Optic Neuritis |
| Worst Symptom: Fatigue and Dizziness | Best Treatment: Best? The Betaseon seems to be helping |
Comments:
05/27/99 06:04:53
| Name:Elizabeth Fanelli | Email Me: Email Me | |
| Home:Cincinnati, OH | Age at Onset:1988 | Presenting Symptom: Optic Neuritis |
| Best Neurologist:(phone # & address): |
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Comments: I'm a divorced mother of three, Registered Nurse, diaagnosed in April 1988 with Relapsing Remitting. Most problems today are with balance and stamina, the USUAL STUFF. I am on Avonex and guess I am doing well, at least the Doctor says so. Hard to tell from one day to the next. Recently I have been haveing a lot of problems with my legs. They jerk a lot and I can't sleep because of it. I've heard it called "restless legs" any one have it and any comments on how to manage it? I read a great book called "Women Living With MS" Written in Cincinnat by a woman I would love to meet. What insight it gave me. I found so many of us have the same stupid things happen. Look forward to sharing some great information with all and hope to hear from you out there. |
05/22/99 05:36:42
| Name: jacki | Home: Vilonia | |
| Age at Onset: 12-14 | Presenting Symptom: Depression, Numbness, Pain, Fleeting Blurred Vision, Abnoraml Leg, Weak Arms |
Worst Symptom: Now, Intention Tremors of Arms, Legs, & Trunk when tired or exerted |
| Best Treatment: SoluMedrol 5 days 1000mg |
Best Neurologist:(phone # & address): There are more jerks than good neurologists we have to see and tolerate for this illness |
05/22/99 04:09:50
| Name: Kelisa | Visit Me | Email Me: Email Me |
| Home: Canada |
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Comments: Hi, Your site is extremely informative with great information.It is nice to see so many wonderful MS sites on the net. I have Chronic/Progressive MS and I feel that attitude is everything. God Bless. |
05/18/99 19:15:31
| Name: Snax119 | Email Me: Email Me | |
| Home: Md. | Age at Onset: 23 | Presenting Symptom: Double Vision |
| Worst Symptom: not walking | Best Treatment: ACTH | Best Neurologist:(phone # & address): Rosenthal Hagerstown |
05/17/99 19:24:31
| Name: JONI | Email Me: Email Me | |
| Home: AZ | Age at Onset: 31 | Presenting Symptom: My Balance Sucks, I need a Walker |
| Best Treatment: Betaseron has Helped Me So Much |
05/17/99 03:28:13
| Name: Alvin Benatovich | Visit Me | Email Me: Email Me |
The beast and the dragon,
So bleary eyed,
Experts were asked,
Help is so close,
Hang on my friends,
They visit your bed,
Holding down your body,
Setting fire to your head.
From lack of sleep,
Thought so unclear,
And forced to weep.
To set the blame,
All pulling and pricking,
But could not name.
As it always has been.
Belief in yourself,
And the power within.
Draw strength from above.
Our chain so strong;
Just feel the love.
05/05/99 04:12:58
| Name: KB | Email Me: Email Me | |
| Home: South Carolina | Age at Onset: 26 | Presenting Symptom: severe Optic Neuritis in both eyes, leg spasticity in both legs, bowel and bladder problems, hand tremors |
| Worst Symptom: Optic Neuritis | Best Treatment: Methotrexate | Best Neurologist:(phone # & address): Dr. Jean-Michel Goust, Medical Univ. of SC MS Clinic, (843) 792-4329 |
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Comments: I went through 3 neurologists before finding Dr. Goust. In addition to being a neurologist specializing in MS, he is an Immunologist, so I get the benefit of both worlds. 3.5 months of Methotrexate stopped a 2.5 year exacerbation that nothing else had stopped. After a year since diagnosis, I am finally to the point where I don't dwell on MS all the time...much to the relief of my long-suffering husband! |
04/25/99 19:53:04
| Name: Doug Quinn | Email Me: Email Me | |
| Home: Hazleton, PA | Age at Onset: 25 | Presenting Symptom: loss of use of right arm |
| Worst Symptom: loss of vision and hearing | Best Treatment: some help from solumedrol | Best Neurologist:(phone # & address): Dr. Carlson, Geisinger medical center, Danville, PA 17822 |
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Comments: Started in 1967 when I was 25. Progressively weaker in right arm. Had eye problems (Scotoma, Nystagnus, Diplopia and loss of color vision), several other symptoms until was sent to a Neurologist. He did the old hot water test, that and a Spinal Tap pointed to MS. My disease has been Chronic-Progressive right from the start. After going through my own difficulties with acceptance, I was given the opportunity to lead an MS support group in Hazleton, PA. The group has been going strong since 1985. My wife and I met at a picnic for MS people and their families. She also has MS. We understand each other fairly well, she understands me better than I understand her. But, then that's true in any marriage. |
04/18/99 22:21:39
| Name: Evonne Cutress | Email Me: Email Me | |
| Home: Millarville (near Calgary) Alberta, Canada | Age at Onset: 35-48 | Presenting Symptom: Loss Of Balance |
| Worst Symptom: Hand Tremors | Best Treatment: Haven't tried any real treatments yet | Best Neurologist:(phone # & address): Dr. Ranawaya |
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Comments: In addition to MS I have Epilepsy which I acquired at age 14. I have managed to lead a very good life and consequently am a bit reluctant to take any more drugs, because of the possibility of adverse side effects. Also because my MS doesn't seem to be Relapsing/Remitting, but rather one of the progressive types there is really no treatment for it at present as I understand. |
04/11/99 04:02:52
| Name: dana | Email Me: Email Me | |
| Home: Can | Age at Onset: 32 | Presenting Symptom: Optic Neuritis |
| Best Treatment: Copaxone |
Best Neurologist:(phone # & address): paulseth |
04/06/99 04:24:12
| Name: Linda Short | Email Me: Email Me | |
| Home: Princeton, WV | Age at Onset: 45 | Presenting Symptom: right-sided numbness |
| Worst Symptom: weakness; pain | Best Treatment: Avonex | Best Neurologist:(phone # & address): Dr. William Merva |
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Comments: While grocery shopping after work, I suddenly developed right-sided numbness, blurred vision, and tremors. I thought I was having a stroke. I was admitted to the hospital and after a week of tests, was diagnosed with MS. I began taking Avonex injection as soon as it became available and have had only 2 exacerbations since that time. At the time of my diagnosis, I had no idea what MS was. I was terrified; but I have learned a lot in the past 3 years including how to cope with the ongoing daily grind of MS. |
03/29/99 03:56:36
| Name: Kathy Lynn | Email Me: Email Me | |
| Home: New York | Age at Onset: 25 | Presenting Symptom: Fibromyalgia-leg + Optic Neuritis |
| Worst Symptom: Fatigue/lower body Paralysis | Best Treatment: Still doing theatre! (you can direct laying down) | Best Neurologist:(phone # & address): Dr. Linda Selwa Univ. of Michigan Hospital, Taubman Center, Ann Arbor, MI (734)936-9020 |
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Comments: Dr. Selwa is the most incredible individual. Not only did she treat my illness, she followed my mental and emotional highs and lows - she let me know I could contact her whenever I needed to. She is frank, sympathetic, dedicated, informed - I have a family of medical people, and I've never known anyone like her. I 'lost' her when I moved. I truly believe one needs to strive for the possible, and the impossible, in the hopes of staying ahead, living meaningfully, finding humor... But I also believe it is OK to feel rage, and sorrow, and betrayal, and scream!! Then, find the way up if it's the only way to go. |
03/28/99 00:20:12
| Name: Bobbi Martin | Email Me: Email Me | |
| Home: Dallas,Tx | Age at Onset: 44 | Presenting Symptom: ON |
| Worst Symptom: Loosing ability to walk without struggling | Best Treatment: Ditropan | Best Neurologist:(phone # & address): Dr Rudick @ Cleveland Clinic |
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Comments: I've had symptoms for over 10 yrs, In the Spring of 98 numbness and tingling increased dramatically. Major Change in Cognitive ability. I'm currently waiting for written reports from Cleveland Clinic as Dr. Rudick believes that I do have MS. Last week my symptoms really lightned up and I'm walking without aid. I'm a 54 and female living in Dallas |
03/24/99 11:53:05
| Name: Julie M. Zuby | Email Me: Email Me | |
| Home: Farmington, Michigan USA | Age at Onset: 51 y.o. | Presenting Symptom: Gait Dysfunction and Nystagmus |
| Best Treatment: Copaxone |
Best Neurologist:(phone # & address): Chandrakant C. Desai, MD 248.353.9817 Southfield, Michigan |
03/17/99 12:24:52
| Name: Mousechew | Email Me: Email Me | |
| Home: Hagerstown Md | Age at Onset: 20 | Presenting Symptom: Vertigo, Fatigue, Pain |
| Worst Symptom: Pain/Weakness/Fatigue | Best Treatment: Keep The Body Healthy |
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Comments: Recommended, By Friend. Look's like you have a Winner. I also have a site, Forum main part, new baby just starting to grow.
"God Bless You" |