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09/13/98 08:20:57
| Name: Ree | Email Me | |
| Home: Maryland, USA | Age at Onset: 33 | Presenting Symptom: Numb Legs |
| Worst Symptom: Optic Neuritis | Best Treatment: IV Solu-Medrol w/a Prednizone taper | Best Neurologist:(phone # & address): Don't have a good one. |
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Comments: If you're a lesbian with MS or her partner, don't feel alone! There is an on-line group for us! Email me for more details. Ree |
08/27/98 05:03:20
| Name: Paul Fenton | Email Me | |
| Home: Home | Age at Onset: 54 | Presenting Symptom: Weaknes of right side of body |
| Worst Symptom: ON Optic Neuritus | Best Treatment: Solu-Mendral Steroids |
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Comments: Glad to find another place for us people with MS to come to be with other people that have MS. It is nice to see and hear how other people live with this disease. Keep up the good work!! |
08/25/98 16:43:59
| Name: Kathy Hess | Email Me | |
| Home: Pipestone, MN | Age at Onset: 27 | Presenting Symptom: Numbness...Balance..some Cognitive problems |
| Worst Symptom: ??? probably Balance | Best Treatment: I have had Plasma Phoresis... Cytoxin... ACTH... don't really know if one or the other helped... haven't ever used new drugs. |
Best Neurologist: (phone # & address): Dr. KG KOOB, Sioux Falls, SD |
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Comments: I have had this disease for 24 years, and have to consider myself extremely fortunate. I am walking with cane when outside.... use a 3-wheeler.... when shopping or being a tourist of sorts. I am currently involved with MedSupport and really enjoy the involement of others with MS. Thank you for the invitation to visit your site. It is so well put together and I enjoyed it all. Kath |
08/25/98 00:05:43
| Name: Kate | Home: Nova Scotia, Canada | |
| Age at Onset: 38 | Presenting Symptom: Leg Weakness, Hot & Tingly sensation |
Worst Symptom: Leg Weakness |
| Best Treatment: don't know yet |
Best Neurologist: Dr. Bhan |
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Comments: This is a great website. Very informative. I find the print on the guestbook to be very, very small. Is it just my computer? I love to read the entries but have difficulty because the print is so small. I'm new at this MS stuff and am having a hard time dealing with the weak legs. I can still walk but sometimes it feels like my legs are just going to give out. The sensory stuff I can live with although it is annoying. The thought of not being active like I normally am really scares me!!! |
08/20/98 05:30:17
| Name: Becky | Email Me: Email Me | |
| Home: Denver,CO | Age at Onset: 36 | Presenting Symptom: Fatigue |
| Worst Symptom: Pain | Best Treatment: Drugs | Best Neurologist:(phone # & address): Dr.Celina Tolge (970)353-2457 |
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Comments: I really liked your cover page, It was sssooo true. Everytime I think I'm "adjusting" to this damned disease, I get a new symptom. I have CP, so I suspect the preceeding will always, pretty much, be the case. OBoy. I'd think I'm depressed but I'm already pushing two AntiDepressants. Sorry I wasn't more positve, bad night. Hope to see more of you. |
08/18/98 04:21:24
| Name: Sifty Frost | Email Me: Email Me | |
| Home: Kingsport, TN | Age at Onset: 32 | Presenting Symptom: Pins & Needles |
| Worst Symptom: Optic Neuritis | Best Treatment: Avonex |
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Comments: Enjoyed your website. |
08/04/98 17:00:46
| Name: Melisa Scarlott | Email Me: Email Me | |
| Home: Louisville, KY |
Age at Onset: 43 | Presenting Symptom: Optic Neuritis |
| Worst Symptom: Fatigue | Best Treatment: Cylert |
Best Neurologist: Stephen Kirzinger |
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Comments: I think the hardest part is that I'm not sure I'm RR. Most of my exacerbations are sensory and relatively mild. But I seem to be very slowly developing other symptoms - spasticity, weakness - a slow progression. But, I'm learning to take better care of myself and have great support from my husband. I need to touch base with other MS'ers and am grateful for the hard work put into this site. Grace happens! |
07/10/98 19:17:33
| Name: Candace Hickman | Email Me: Email Me | |
| From: El Segundo, Ca. | Age at Onset: 19 | Presenting Symptom: Lack of Bladder Control |
| Worst Symptom: Paralysis of Right Side |
Best Treatment: Steroids |
Best Neurologist: Norman Namerow |
06/26/98 02:15:39
| Name: Margaret | Email Me: Email Me | |
| From: Healdsburg, CA |
Age at Onset: 17 | Presenting Symptom: Numb & Clutzy |
| Worst Symptom: Pain | Best Treatment: Elavil & Tegretol |
Best Neurologist: Forbes H. Norris |
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Comments: This is the worst and best thing that ever happened to me... it was the best of times, it was the worst of times (Chas. Dickens)... my entire adult experience is formed by M.S. because I was adolescing when it started. That was 31 years ago.... Not sure what others have to say. I feel adapted and now the world gets to adapt to me (turn-about is fair play?) ... anyway, looking forward to reading about and hearing from others |
06/24/98 23:45:18
| Name: Lee | Email Me: Email Me | |
| From: Chicago,Il | Age at Onset: 56 | Presenting Symptom: Dragging right Leg |
| Worst Symptom: Weakness in Legs |
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Comments: Great site.Lots of info.Will visit again. Lee |
06/08/98 22:05:07
| Name: Sharon Jones | Email Me: Email Me | |
| From: Oregon | Age at Onset: 42 | Presenting Symptom: Numbness from Feet Upwards |
| Worst Symptom: Graves Disease |
Best Treatment: SoluMedural IV |
Best Neurologist: Dr. Richard Randall |
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Comments: Having this disease has been an ongoing lesson in patience. I always knew that when aged, changes would be tolerated. This was not what I planned to have happen. MS affects your whole family. It's painful in many ways. Mental pain has been the worst of my daily acceptance of living with MS. Mostly the lifestyle I had planned with my husband has been altered. Friends have come and gone. I have tried to find what makes my days longer and healthier. Many times I have failed in my attempts to stay well. Trying new drugs, therapies and mobility aids has been difficult for everyone I live with. Everyday is a hope for the 'cure'. I am so glad I have friends that share with me on the forums. Thanks to Tom for making more room for others like me to find understaning and new ways to deal with MS. The ones we love suffer the most. We can get though this disease with a little help from our friends. |
06/08/98 13:48:48
| Name: Jayne | Email Me: Email Me | |
| From: Merrick, NY (on L.I.) |
Age at Onset: Dx'ed '87 | Presenting Symptom: Right-Sided Paralysis |
| Worst Symptom: Those at first dx'ed exacerbation |
Best Treatment: Betaseron. It's stabilized me. |
Best Neurologist: Dr. P. Coyle at SUNY @ Stony Brook; the State Univ. of NY |
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Comments: I'm very interested in MS research currently being done & try to keep up with it as well as I can. I have collected many MS Links in the year I've been online. Too vast to list here, if you're interested in those I have you've only to drop me an email. |
06/04/98 01:29:19
| Name: Gretchen Becker | Email Me: Email Me | |
| From: Seattle WA | Age at Onset: 10 years old | Presenting Symptom: Weakness, Exhaustion |
| Worst Symptom: Stumbling Walk |
Best Treatment: Massage |
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Comments: It took 38 years to come up with a probable diagnosis. It feels quiet and better to know what it is than to live in questions and fear. I do have moments of wild self pity but those are usually short-lived. I have only had the diagnosis for a year and still need information and suport about this. My hsuband and family "don't get it" yet. . . thanks for being out there. |
06/03/98 18:23:35
| Name: Mark Conly | Email Me: Email Me | |
| From: Oakland, CA |
Age at Onset: 30 | Presenting Symptom: Weakness in Legs |
| Worst Symptom: Muscular Weakness |
Best Treatment: Steroids/Avonex |
Best Neurologist: Dr. Seeb, Hayward Kaiser |
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Comments: Looks like the best MS page I've seen. |
05/24/98 19:53:42
| Name: Tracey Mitchell | Visit Me | Email Me: Email Me |
| From: : New Jersey | Age at Onset: 29 | Presenting Symptom: Tingling, Numbness, Poor Balance, Incontinence |
| Worst Symptom: Pins & Needles, Occasional Pain | Best Treatment: Faith and Learning to take it easy |
Best Neurologist: Still looking for a good one :-( |
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Comments: I think it's great that modern technology allows us to interact and communicate with others about our problems:-) |
05/16/98 23:44:14
| Name: Susan Chisena | Email Me: Email Me | |
| From: CA | Age at Onset: 30 | Presenting Symptom: Vertigo |
| Worst Symptom: Fatigue, Migraine, Vertigo |
Best Treatment: Healthy Lifestyle |
Best Neurologist: Haven't found one! |
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Comments: Stopped all medication - side effects made me feel worse. Prefer a more natural appproach - low fat/vegt diet, exercise, rest. Acupuncture & Chiropractic are somewhat helpful. Has anyone found anything that helps with the fatigue???? |
05/14/98 19:39:16
| Name: Debbi | Email Me: Email Me | |
| From: same | Age at Onset: 34 | Presenting Symptom: Extreme Weakness on right side, Fatique, Pain |
| Worst Symptom: Pain | Best Treatment: Bee Stings | Best Neurologist: ???? |
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Comments: I'm new to Bee Venom Treatment, it's been 2 & a half months. I have tried all other treatments and this is the first to show SIGNS of reversal. |
05/14/98 18:56:57
| Name: Vickie Keddy | Email Me: Email Me | |
| From: Home | Age at Onset: 25 | Presenting Symptom: Numbness, Use wheelchair, Fatigue, Bladder and Bowel problems, Legs like Spagetti! |
| Worst Symptom: Paralyzed from the Waist Down |
Best Treatment: SoluMedrol by IV |
Best Neurologist: Dr. Rahman, Nashua, NH |
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Comments: Although I had Bells Palsy at 25 with my second child it was never diagnosed as anything but a virus until the MS hit bad in 1990 at the age of 40. I had dealt with Fybromyalgia which has alot of the same symptoms of MS so it would cover the problems. I spent a year trying to find out what was wrong and only after a spinal tap was diasnosed with MS. Believe it or not, it was a relief because at this point I really thought I was dying. I am now 47 and I stay home on SS Disability and keep an open an positive mind to keep my family and myself in a better place. |