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12/30/99 18:07:01
Name: Cathy Phillips   Email Me
Age at Onset: 21 Presenting Symptom: Blurred Vision Worst Symptom:
Bladder Malfunction
Best Treatment:
None to date
Best Neurologist:
None to date

Comments:
Living here in what I refer to as the armpit of the world, there is LITTLE info or help I can find. I have written to the senator of our state, no help there. Every day something new appears to bring the disease to the forfront and leave me feeling useless.

My family and husband continue to go about their lives, as they should, leaving me sitting here, 60 miles from a town, with no thought that after 5 years in a chair, I might want to go somewhere too.

I haven't been out to a movie, a museum, or any social function in over 5 years. I would love to get a van, I would drive, if I could go; but at over $40,000.00 that's NOT going to happen. I have lost use of my left hand, and my right eye is going now.

I would love to hear how some of the other victems, handle these stressful situations without becoming drastic.
Cathy


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12/27/99 02:44:05
Name: Audery   Email Me
From: Northeastern PA Age at Onset: 30 Presenting Symptom: Numbness/Fatique
Worst Symptom: Pain Best Treatment: None Yet! Best Neurologist:
Dr. Dhaduk

Comments:
I have been diagnosed with MS, since Dec. 1998. I had a lot of symptoms before I was diagnosed. It started with Numbness and extreme Tiredness. I thought I was just lazy.

Now I still get Numbness and Tiredness but the Pain and Spasticity and Forgetfulness have really taken over.


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12/25/99 02:51:28
Name: Nancy L. Otis   Email Me
From: Belle Vernon, PA Age at Onset: 21 Presenting Symptom: Ataxia
Worst Symptom: Only one hand kinda left Best Treatment: Knowledge Best Neurologist:
Tom Scott, 412-321-2826, A.G.H., PGH, PA.

Comments:
I've had MS for 30 years - too long. Over the years I've invented several little things that help me compensate for Weakness slowly coming on and Spasms.

I made straps of velcro that I could grab to move my legs around - first into the bed or car, and now just to change positions. I cut leg holes in a couch cushion and sleep with my legs in the holes. There is a small pillow under each knee to prevent induction.

I can't move in bed anymore, but with my legs in the cushion I don't get bed sores on my legs - caused by spasms or Clonus... and my legs are not able to bounce out of bed and dangle over the side, because they are cradled in the cushion.

Over the years, I've tried many of the supposed cures ... Macrobiotics, Hypocraties Health Institute, Hyberbaric Oxygen, Rocker Shoes, Special Diets, Interferon, Bee Stings, and about an hour ago, I just gave myself my Avonex shot.

I think that I am a good example that, just because you have MS, your world doesn't have to stop. My two kids are in college now. MS is a terrible strain on the family, but, I think I would have gotten divorced anyways. I'm rambling...

I don't think that I'll be able to find this site again so please contact me some time. Nancy


Thin Blue Line

11/25/99 20:24:54
Name: Shonda Brrows  
From:
friends home
Age at Onset: 24 Presenting Symptom:
Numbness in right Arm and Hand
Worst Symptom:
Loss of Vision in right Eye
  Best Treatment:
At this time nothing has really helped me, I'm
getting ready to start the Copaxone treatment

Comments:
I Feel having a positive attitude seems to help me at times although it is very frustrating. If I can get to a computer again I will let you know how the treatment is going.


Thin Blue Line

11/22/99 00:15:48
Name: Janet Nunley   Email Me
From: Gainesville, FL Age at Onset: 27 Presenting Symptom: Paralysis
Worst Symptom: Paralysis Best Treatment: Laughter Best Neurologist:
Dr. Edward Valenstein, Shands Hospital at the University of Florida, Gainesville, FL

Comments:
Finding out I had MS was the most difficult thing I ever experienced. It changed the entire course of my life.

I could no longer, in good conscience, pursue a career in Veterinary Medicine (how would I tell my patients I can't really stand today, so you'll have to come back another time), but over the past few years, I've come to terms with it.

I was diagnosed 1/15/92. I quit school for several years, but returned 3 years ago. I am about to complete my Bachelor's Degree in Zoology, and though it still stings to know I cannot be a DVM, I am happy that despite the hardships like the times I cannot see because I'm so dizzy, or the days I cannot walk, I did not give up.

I would say, I MADE IT and that laughter has been the best medicine. I found that MS support groups were far too depressing so I have found other support, from family and friends. I highly recommend getting a cat (I got 4) and they helped as much as any medication ever has.


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11/20/99 17:56:50
Name: Pekka Säntti   Email Me
From: Finland Age at Onset: 38 Presenting Symptom: Double Vision
Worst Symptom: Fatigue

Comments:
I'm happy to find other MSers and can maybe learn something about their life and illness. Greetings from REAL Santa's Country


Thin Blue Line

11/18/99 14:55:10
Name: Claire   Email Me
From: Ontario, Canada Age at Onset: she was 35 Presenting Symptom: Lack of Balance
Worst Symptom: Vertigo and Numbness

Comments:
I found this site really helpful since my Mum has MS. It's hard watching her not be able to do things that she used to do. She keeps a great attitude and pushes herself to the max though, which is both good and bad.

She won't give up or stop for anything and I think that's what helped keep her going.


Thin Blue Line

11/16/99 20:10:09
Name: Mark Fry   Email Me
From: Nashville Age at Onset: 31 Presenting Symptom: Numbness in Right Leg
Worst Symptom: Nerve Pain in Hands and lower Legs Best Treatment: Tegretol Best Neurologist:
Shriram-Vanderbilt

Comments:
I am looking to find a person who can help me decide what is best for my health. I just started a business as I was diagnosed... is it worth possibly ruining my health or should I just go work for someone else... or is that more stressful. Help!


Thin Blue Line

11/15/99 01:24:53
Name: Lisa Gasswint   Email Me
From: Kansas Age at Onset: 30 Presenting Symptom: Severe Fatigue, Numbness/Tingling, Vertigo, Spasticity, Tremors, decreased Cognition
Worst Symptom: Fatigue, decreased Balance/Coordination Best Treatment: Baclofen for Spasticity, Amantadine for Fatigue Best Neurologist:
Trent Davis, Salina, KS

Comments:
I was diagnosed with Fibromyalgia 5 years ago, six months ago, I experienced sudden, severe Vertigo, lasting two months. I was unable to work full-time. When the Vertigo subsided, Numbness/Tingling began in my hands and feet. I continued to experience decreased Balance and Coordination.

MRI showed Lipoma in my Transverse Sinus, unsignificant findings. Visual Evoked Response - negative, BrainStem Response - negative.

I am waiting for results of Spinal Tap. Cognitive testing shows weakness in right hemisphere of Brain. Dr. suspects MS and is looking for positive diagnosis to "open the door for further treatment."


Thin Blue Line

10/27/99 17:36:29
Name: Heather   Email Me
From: Victoria, BC. Canada Age at Onset: diagnosed at 30 Presenting Symptom: Numbness/Weakness in right Leg
Worst Symptom: I am having trouble answering that one. I guess my Bladder, but sometimes my Walking. Best Treatment: Betaseron - it's really helping, a great Nutrition program, deep faith in God. Best Neurologist:
S.A.Hashimoto-Vancouver, BC.

Comments:
I have had very aggressive MS since being diagnosed. Last year was especially hard, I was in a minor traffic accident,and it snowballed me into relapse after relapse, I started Beta-seron that year, I know it is helping because I have only had one relapse this year, and it was mild compared to all the other ones in the past.

I also changed my diet,and I have noticed increased energy, I still try to rest a lot which is very important, and sometimes hard to do when you feel like you have the energy to keep going. I am new to the internet and am enjoying learning more,and reading messages from other people who have MS.


Thin Blue Line

10/26/99 07:23:06
Name: Sioux Green   Email Me
From: Gisborne New Zealand Age at Onset: 32 Presenting Symptom: Loss of Bladder control
Worst Symptom: Fatigue!! Best Treatment: Avonex (Beta Interferon 1a) Best Neurologist:
I gave him the sack - my physician is awesome, so I've kept him on

Comments:
My MS followed a pretty aggressive course at first - my way of dealing with it (and society's reaction to it) is by drawing cartoons poking fun at the whole scenario! Great website - thanks!


Thin Blue Line

10/09/99 16:19:17
Name: Tamara Oliveira   Email Me
Age at Onset: 28 Presenting Symptom:
Loss of Vision in one Eye
Worst Symptom:
Loss of Vision in one Eye

Comments:

Thin Blue Line

09/22/99 12:34:51
Name: eileenmaida   Email Me
From: Freehold,NJ Age at Onset: 39 or 32? Presenting Symptom: Funky Vision , Weakness
Worst Symptom: Acute, Severe Facial Pain Best Treatment: ???????????Klonopin Best Neurologist:(phone # & address): H. Weinreb (212) 598-2798

Comments:
MS stinks, but you have to make the best of it and what you have.


Thin Blue Line

09/19/99 07:21:47
Name: Alison Whiteman   Email Me
From: Seattle Age at Onset: 14 dx at age 32 Presenting Symptom: Profound Fatigue
Worst Symptom: Muscle Cramps, Weakness Best Treatment: Diet, Rest, Stress Reduction, Interferon Best Neurologist:(phone # & address): James Bowen, University of Washington in Seattle

Comments:
I am just starting to see myself as Alison first and MS second. MS is a part of my life, not my whole life. It has changed me in ways I did not think possible, and not all of them are bad.

I don't take walking for granted, I am much less angry than I used to be, and I appreciate things more. I look forward to living my life as best I can from here on out.

Thanks for reading this!!
Alison


Thin Blue Line



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