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just diagnosed
Question:
I am a 23 year old female and I was just diagnosed with MS February 14 1997. Ever since I was in Jr.High I have unexplained eposides. Like any person I went to see a doctor. Time and time again they found nothing to explain what was going on with my body. At one point when I was in High School I had went back to see a doctor and he stood outside the door telling another that I have been so many times and that he thought it was all in my head. That is when I stopped visiting doctors unless something very serious was going on. In January I had an eposide and at that time I didn’t realize that is was until I was diagnosed where my eye was in constant pain. I couldn’t even move my eyeball without a sharp pain. I lost part of my vision and the lighting at my job was very hard to deal with. This went on for 3 weeks and I finally gave in and went to see a eye doctor. From his point of view everything was fine but the loss of vision concerned him. He referred me to a specialist and they ran test the proved something had happened to my eyesight in certain parts of my eye. He suspected MS but wanted me to see a neurologist. He also thought the same and wanted me to have a MRI taken. It came back positive. I have wondered for all these years if this was what I had since my father was diagnosed with MS in his early 40’s. From what I know it has gotten pretty bad. We contantly asked doctors if it could be passed down and they would say no they didn’t think so but for me to have similar symptoms made us wonder. I still am having eposides and as I have gotten older they have progressed. My hands are now always tingle and numb. I tend to drop things now and again so I have to watch my hands. I have the same tingly and numbness that spreads throughout my whole body. There was a time that my legs and feet had gotten so tinglly and the feeling of heaviness took over that I could no longer drive until it passed. In fact I am have a eposide right now and it spreading throughout my body. I have tried to keep this to my self but with this eposide I had to inform my work that I could no longer go up ladders. I know that I should not be ashamed but it gets hard sometimes. I still think I am going through denial and I know I still get depressed now and again. The doctors wanted to start me on the new drug Avonex but I wanted to research to see if anyone else has been on it or nows about the side effects and so forth. I don’t want to jump into a expensive drug without knowing. I am still waiting to hear from my insurance to find out if I will be covered. It is scary just waiting. I am 23 and I do not have a lot of money. My bills are going to be out of this world even with any coverage. I have had a lot of support from my mother and my boyfriend. We are still going to marry and he has been wonderful though everything that has happened. If anyone has any suggestions as to where I could find information on this drug or any of the drugs please respond or e-mail me. I also would like to know of any other areas that are good to research on MS or if you would like to share your story with me. Melissa
Response:
I am a 23 year old female and I was just diagnosed with MS February 14 1997. Ever since I was in Jr.High I have unexplained eposides. Like any person I went to see a doctor. Time and time again they found nothing to explain what was going on with my body. At one point when I was in High School I had went back to see a doctor and he stood outside the door telling another that I have been so many times and that he thought it was all in my head. That is when I stopped visiting doctors unless something very serious was going on. In January I had an eposide and at that time I didn’t realize that is was until I was diagnosed where my eye was in constant pain. I couldn’t even move my eyeball without a sharp pain. I lost part of my vision and the lighting at my job was very hard to deal with. This went on for 3 weeks and I finally gave in and went to see a eye doctor. From his point of view everything was fine but the loss of vision concerned him. He referred me to a specialist and they ran test the proved something had happened to my eyesight in certain parts of my eye. He suspected MS but wanted me to see a neurologist. He also thought the same and wanted me to have a MRI taken. It came back positive. I have wondered for all these years if this was what I had since my father was diagnosed with MS in his early 40’s. From what I know it has gotten pretty bad. We contantly asked doctors if it could be passed down and they would say no they didn’t think so but for me to have similar symptoms made us wonder. I still am having eposides and as I have gotten older they have progressed. My hands are now always tingle and numb. I tend to drop things now and again so I have to watch my hands. I have the same tingly and numbness that spreads throughout my whole body. There was a time that my legs and feet had gotten so tinglly and the feeling of heaviness took over that I could no longer drive until it passed. In fact I am have a eposide right now and it spreading throughout my body. I have tried to keep this to my self but with this eposide I had to inform my work that I could no longer go up ladders. I know that I should not be ashamed but it gets hard sometimes. I still think I am going through denial and I know I still get depressed now and again. The doctors wanted to start me on the new drug Avonex but I wanted to research to see if anyone else has been on it or nows about the side effects and so forth. I don’t want to jump into a expensive drug without knowing. I am still waiting to hear from my insurance to find out if I will be covered. It is scary just waiting. I am 23 and I do not have a lot of money. My bills are going to be out of this world even with any coverage. I have had a lot of support from my mother and my boyfriend. We are still going to marry and he has been wonderful though everything that has happened. If anyone has any suggestions a
Response:
Hi Melissa, Well you have just found the best group of people in the world to chew the fat about just about anything you want to know or debate. I am sorry that you got the "in your head" brush off for your attempts to find out what was up. There is WAY too much of that around in my opinion fwiw. I hope you are ok and remember to smile where possible. Take good care, Nik ~ Guernsey At 17:03 11/04/97 -0700, you wrote: – Hide quoted text — Show quoted text ->I am a 23 year old female and I was just diagnosed with MS February 14 1997. >Ever since I was in Jr.High I have unexplained eposides. Like any person I >went to see a doctor. Time and time again they found nothing to explain what >was going on with my body. At one point when I was in High School I had went >back to see a doctor and he stood outside the door telling another that I have >been so many times and that he thought it was all in my head. That is when I >stopped visiting doctors unless something very serious was going on. In >January I had an eposide and at that time I didn’t >Melissa
Response:
MCd…@AOL.COM, Welcome to our group. There are, unfortunately, as you have found out, some insensitive doctors out there. It’s good they are not all that way. Paul from IL In a message dated 97-04-13 01:52:43 EDT, you write: << I am a 23 year old female and I was just diagnosed with MS February 14 1997. Ever since I was in Jr.High I have unexplained eposides. Like any person I went to see a doctor. Time and time again they found nothing to explain what was going on with my body. At one point when I was in High School I had went back to see a doctor and he stood outside the door telling another that I have been so many times and that he thought it was all in my head. That is when I stopped visiting doctors unless something very serious was going on. In January I had an eposide and at that time I didn’t >>
Response:
Melissa, MwlissaMCd…@aol.com wrote: > I am a 23 year old female and I was just diagnosed with MS February 14 1997.
[Please pardon the typos <Grin> ] 1) First of all, I want to add my commiseration to that which you may have already received… A diagnosis of MS isn’t the end of the world, but it sure feels like it sometimes. 2) As for the Avonex question, it has been shown that starting a drug like Avonex or Betaseron can help reduce the frequency and severity of MS exacerbations. Sooner seems to be better than later. They are very similar chemically, and vary mostly in the injection methods and a few of the claims the manufacturer make… But your doctors can fill you in on all of that. There is also another class of drugs recently approved, Copaxone. If you are not covered by any health insurance I am not sure how you will handle the $1000/month cost of these drugs though. I’m certain someone will comment to you on this more knowledgably that I can. 3) As for the inheritability of MS, since the cause is unknown, this has long been a big question for many of us. It seems (asbestos suit on) that there is an environmental trigger, perhaps a slow virus) that causes some of us to attack our own Central Nervous System, and that there may be a gene or genes involved in determining susceptability to this. Yes, I am hedging, largely because no-one yet really *KNOW* what the story is on this. IF it is polygenic, and IF there is an environmental trigger and IF you inherited these genes from your father… well, you get the picture. The children of people with MS do seem to show a slightly highr rate of having MS themselves, but that could be because of being raised in the same region of the same country… There are many questions on this topic, and I am not a geneticist, or even an MD. Please continue to ask questions, especially on this topic. Look around the InterNet, and peoples home pages. There is a LOT of information out there. The key is to seperate the information from the mis-information… Good luck! 4) As for your descriptions of your symptoms – numb ’stupid’ hands and doctors who don’t believe there is anything physically wrong with you… well, many of us have had to deal with these too. 5) As for letting your co-workers know, that is a different discussion. You probably SHOULD let the medical department (and maybe personnel) know, as anything that affects your employment or job duties might be affected, and if they know you have MS, you will have some protection from the anti-discrimination laws. They are not supposed to tell anyone else at all. 6) As for the denial and depression, these are normal and can be dealt with, especially if you get the help you might need to do so. We ARE here for you, Melissa, but having your boyfriend, your family, and us might not be enough. There is no shame in seeking counseling. And again, assuming you get this from a reputable source, your confidentiality should be protected. You can also seek guidance from a minister/priest/rabbi/whatever. They are often good at listening, and sometimes that is all that is needed. Please do not hesitate to contact me directly, and certainly the NewsGroup is here for you… after all,it isn’t called alt.support.mult-sclerosi because we have great recipes! We are here to help each other out, and kiddo, that includes YOU! 7) If you are looking for more MS information, I can GUARANTEE you will find it on the web, not just my web page! Some of the other ones you will find on the InterNet will get you a ton of information. If you can’t find it, just contact me directly, and I’ll point you in the right direction to get started. Among other resources, you might want call 1-800-FIGHT-MS, the national MS society’s hot-line. 
Finally, the most important part of dealing with your MS, in my humble opinion, is your attitude. The folks here can help you keep a good one, the support of your family and beau is a great plus, and getting guidance can help, but having a good attitude is perhaps the most crucial issue. Again, good luck, and please do not hesitiate to write to me directly. I will help you in any way I can. There ARE a lot of us out here, Melissa, and we are on YOUR side. — The opinions expressed in this note aren’t necessarily even my own. Asking the right question is more important than knowing all the answers – Linda Anchell <linda…@ozemail.com.au> Dadman is Lar…@Techie.Com Come see my WWW page! The URL is http://www.erols.com/dadman – Stop in and Visit!
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NMSS @ 1-800-fiGHT MS has names of neuros who take MS Pts GOODDOC list @ <http://www.clams.org> tries real hard to update list of docs who people with ms recommend
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On 4-18-97 "Mary C. Darden" <ca…@JUSTICE.USDOJ.GOV> wrote: > ..snip.. He told one of my sisters that he >didn’t care if he had to carry me down the aisle so long as I loved him!
..snip.. Mary, What a wonderful story, a real upper! This guy sounds extra special. My best wishes for a long & happy married life are flying to both of you thru cyber space! Lyse 
U, ,U Doggies are just kids in fur! ==o==
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At 09:36 4/18/97 -0400, you wrote: >hi! just diagnosed, need a great ms dr in central NJ and wanted to know >if anyone knows of grants for ms people who need central air! Can’t >take any warmth at all. Thanks. Leni
Howdy! Sorry about your diagnosis, but you couldn’t have come to a better place. The people here are warm, caring and very knowledgeable, and more than willing to share what they know or have experienced. Can’t answer your questions, but did want to welcome you aboard. Hugs n prayers, P. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Some days you’re the pigeon and some days you’re the statue. 
PamY Spokesmom for Jennie who has MS. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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Hi both! Somebody else has made that observation (about Americans being spoiled), in her email today. ‘Great minds think alike!’ Thanks for your comments they’re pretty interesting, too. goodnight, Razia. — Email must…@users.africaonline.co.ke Mail PO Box 80780, Mombasa, Kenya Tel. +254 11 228655 Fax. +254 11 222899
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Hi Melissa, I’ve got a 24 yr. old daughter, diagnosed at 19. She too had unexplained problems from a young age including being tested for mono 3 times (all negative). Tain’t easy getting an MS diagnosis at any age, but I think it’s particularly difficult when you’re so young. Keep in mind that not all docs are like the ones you’ve experienced – keep looking till you find one experienced with MS and with whom you can relate. And please know that a diagnosis of MS is NOT the end of the world. There IS life after MS and it can be GOOD. My daughter knows this first hand. She’s getting married in October (to a wonderful guy who knows all about the MS) and she’s happy as a clam at high tide. Hang in there hon, and stick around here. You’ll learn a lot and the people are wonderful. Hugs n prayers, P. At 17:03 4/11/97 -0700, you wrote: >I am a 23 year old female and I was just diagnosed with MS February 14 1997. >Ever since I was in Jr.High I have unexplained eposides. Like any person I >went to see a doctor. Time and time again they found nothing to explain what >was going on with my body. At one point when I was in High School I had went >back to see a doctor and he stood outside the door telling another that I have >been so many times and that he thought it was all in my head. That is when I >stopped visiting doctors unless something very serious was going on. In >January I had an eposide and at that time I didn’t >Melissa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Some days you’re the pigeon and some days you’re the statue. PamY Spokesmom for Jennie who has MS. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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hi! just diagnosed, need a great ms dr in central NJ and wanted to know if anyone knows of grants for ms people who need central air! Can’t take any warmth at all. Thanks. Leni
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Razia: You are a fascinating person! I loved your note about yourself. Your difficulties living with MS in a 2/3 world country are great! I have spent lots of time in Central America — and know many of the difficulties of which you speak. I hope this list can serve as a source of information and support for you. Marilyn in beautiful Oakland CA — a great birding city!
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- Hide quoted text — Show quoted text -On Thu, 17 Apr 1997, PamY wrote: > Hi Melissa, > I’ve got a 24 yr. old daughter, diagnosed at 19. She too had > unexplained problems from a young age including being tested for mono 3 > times (all negative). Tain’t easy getting an MS diagnosis at any age, but > I think it’s particularly difficult when you’re so young. Keep in mind > that not all docs are like the ones you’ve experienced – keep looking till > you find one experienced with MS and with whom you can relate. > And please know that a diagnosis of MS is NOT the end of the world. > There IS life after MS and it can be GOOD. My daughter knows this first > hand. She’s getting married in October (to a wonderful guy who knows all > about the MS) and she’s happy as a clam at high tide. > Hang in there hon, and stick around here. You’ll learn a lot and > the people are wonderful. > Hugs n prayers, > P. > At 17:03 4/11/97 -0700, you wrote: > >I am a 23 year old female and I was just diagnosed with MS February 14 1997. > >Ever since I was in Jr.High I have unexplained eposides. Like any person I > >went to see a doctor. Time and time again they found nothing to explain what > >was going on with my body. At one point when I was in High School I had went > >back to see a doctor and he stood outside the door telling another that I > have > >been so many times and that he thought it was all in my head. That is when I > >stopped visiting doctors unless something very serious was going on. In > >January I had an eposide and at that time I didn’t > >Melissa > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > Some days you’re the pigeon and > some days you’re the statue. > PamY > Spokesmom for Jennie who has MS. > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I just got married in Sept. to someone I had met 5 yers after diagnosis! I had just begun to have trouble walking, and shortly after we started dating, I began to use a cane (which he even picked out!) When I ‘graduated’ to Canandian crutches, it was during this time that I began to need a scooter and I got one on loan from the MS Society. When it was pretty clear that I was not going to ‘come out’ of the weak legs thing, I bought a scooter of my own. But I ‘walked down the aisle’ supported by my father and brother and my husband knelt on one knee to be at eye level w/me during the ceremony. He told one of my sisters that he didn’t care if he had to carry me down the aisle so long as I loved him! Although I know my Bob is special, I’m sure there are more like him out there! Hang in there and keep your chin up! God bless, Mary
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Welcome Razia H. Mohamedali – wow an MSer in Africa!? Just goes to show how isolated in misery some of us can be. I never thought of people in Africa would suffer – that shows you how ignorant I am. I am sorry that you are so alone in your experience. But now you have us. Share with us. Tell us more about yourself. Best regards, Lorelle, Peace River, Alberta, Canada
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On 4-15-97 Mohamedali <must…@USERS.AFRICAONLINE.CO.KE> wrote: <I too, have just joined the group but diagnosed in Dec.’94 and it is so >nice to hear from so many people as I can find no one in Mombasa >suffering from MS and most people don’t even know what it is. When I try >to explain or people find me reading up on it they tell me that the >more read and talk about it the more I’ll suffer from it!, which >sometimes makes me feel as though I’m a hypochondriac.
Mohamedali, I’m glad that you found us, but sorry that you have to be here. As if having MS sn’t hard enough by itself, it must be very hard not to have anyone else in the area who even knows what MS is. It’s important for us to learn all we can about this rotten disease, & to talk to others about our feelings. You’re not a hypochondriac! Tell us more about yourself & Africa. Post whenever you have questions, need to rant/rave, have answers, or just want to! Take care. Lyse U, ,U Doggies are just kids in fur! ==o==
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Hi, Lorelle, It is real nice hearing from you. Thank you for replying. I may be a Kenyan but, am an Indian by origin and had never set foot in India till ‘90-’91, and boy, are they different! Actually, my ancestor first set foot in Mombasa towards the end of 1400’s and subsequent generations have all been born here, though one of my mother’s maternal uncles decided to go on a bicycle tour of the world with 2 of his friends and when he reached India he fell in love with his future wife and decided to settle there. So, that branch of the family is still there and they have never been here to visit, though us guys have been there. I thought I talked my mother tongue, Gujrati, quite well, but when I heard it in India, it was like listening to a foreign language! Oh, by the way, I am a 42 yr. single female and a muslim and live with my widowed mother. I teach swimming in a Primary school which fortunately is about 5min. walk away from home when I don’t have the car. It is through necessity that I use it as my legs start going numb specially when coming back and as there are no decent sidewalks or even roads(full of potholes), I easily sprain my ankles, loose my balance and fall. It’s happened quite a few times to my embarrassement but I can’t help laughing with everybody else because I can just imagine how I must look to them! I really love what I do and count myself very lucky that I have a job which I like and also live very near. You too, would feel very sorry for some of the teachers having to commute by a very crazy public transport system, sometimes from all the way across town. And it is not at all friendly towards handicapped people. Which reminds me, I have just started contributing to a local paper which comes out every fortnight and this afternoon wrote about the problems people with disabilities have when they try to live independently. In fact, it’s just not possible. After having suffered quite a few weird and unrelated symptoms since the late ’80s, like bladder frequency(was sent for umpteen no. of diabetes’ tests which always came out negative), balance problems, Optic Neuritis, MShug, vertigo, leg spasms, etc., I was at last diagnosed with strongly suspected MS in ‘94. But needed an MRI done which wasn’t available in the country at the time. The opportunity came when I went to visit my brother in Egypt the following year which confirmed the diagnosis. Since then I have been really trying to read up as much as possible about it and corresponding with different MS societies worldwide. The IFMSS has been very helpful. In fact they are the ones to put me in touch with this group. I can’t thank them enough. Well, I’d better end or you’ll dose off from boredom. Also, tell me about yourself. I have been to one tiny corner of Canada in ‘81; Vancouver when I was visiting my sister in Yakima, Washington, U.S.A. The Pacific Northwest is really beautiful! But you are landlocked in Alberta, aren’t you? Warm regards, Razia. Email must…@users.africaonline.co.ke Mail PO Box 80780, Mombasa, Kenya Tel. +254 11 228655 Fax. +254 11 222899
Response:
Mohamedali wrote:
<snip> – Hide quoted text — Show quoted text -> Oh, by the way, I am a 42 yr. single female and a muslim and live with > my widowed mother. I teach swimming in a Primary school which > fortunately is about 5min. walk away from home when I don’t have the > car. It is through necessity that I use it as my legs start going numb > specially when coming back and as there are no decent sidewalks or even > roads(full of potholes), I easily sprain my ankles, loose my balance and > fall. It’s happened quite a few times to my embarrassement but I can’t > help laughing with everybody else because I can just imagine how I must > look to them! > I really love what I do and count myself very lucky that I have a job > which I like and also live very near. You too, would feel very sorry for > some of the teachers having to commute by a very crazy public transport > system, sometimes from all the way across town. And it is not at all > friendly towards handicapped people. > Which reminds me, I have just started contributing to a local paper > which comes out every fortnight and this afternoon wrote about the > problems people with disabilities have when they try to live > independently. In fact, it’s just not possible. > After having suffered quite a few weird and unrelated symptoms since the > late ’80s, like bladder frequency(was sent for umpteen no. of diabetes’ > tests which always came out negative), balance problems, Optic Neuritis, > MShug, vertigo, leg spasms, etc., I was at last diagnosed with strongly > suspected MS in ‘94. But needed an MRI done which wasn’t available in > the country at the time. The opportunity came when I went to visit my > brother in Egypt the following year which confirmed the diagnosis. > Since then I have been really trying to read up as much as possible > about it and corresponding with different MS societies worldwide. The > IFMSS has been very helpful. In fact they are the ones to put me in > touch with this group. I can’t thank them enough.
Welcome to the group, Razia. It is very unfortunate that you should have our common affliction, but it will be interesting to hear the opinion of someone from your part of the world. I believe the only other member I saw posting to our group from your continent was from South Africa. And judging from some of the postings I have seen from you, YES, we are fortunate and somewhat spoiled as to the way of life we have. Thankyou for helping keep things in perspective… — Paul Eberl "Try giving yourself credit for what you CAN do, rather than berating yourself for what you CANNOT" -JoAnn LeMaistre = | | __ | | (__@) ______ (__@) (__@) _______ (__@)__/
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Hi! I too, have just joined the group but diagnosed in Dec.’94 and it is so nice to hear from so many people as I can find no one in Mombasa suffering from MS and most people don’t even know what it is. When I try to explain or people find me reading up on it they tell me that the more read and talk about it the more I’ll suffer from it!, which sometimes makes me feel as though I’m a hypochondriac. So many MSers have had that experience, I believe. It is such a relief to be able to people at last! Razia. — Email must…@users.africaonline.co.ke Mail PO Box 80780, Mombasa, Kenya Tel. +254 11 228655 Fax. +254 11 222899
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Welcome Melissa, you are in good company!! Sounds like you are a girl who is going to go places!! As far as whether or not MS is inherited, it really doesn’t change the fact that you do have MS so while it IS something you want to know, don’t let your fathers condition make you afraid that you will follow directly in his path. There are some excellent resources out there for you to contact! The first place I would go is to http://www.nmss.org (you can call 1-800-FIGHT MS and reach the National MS Society. They are excellent!). You can get loads of information here. I know there are numerous areas you can go to but I will give just a few here so that anyone else that may be following your post can get them too: http://www.clams.org http://members.aol.com/msonetoone/index.htm http://www.betaseron.com http://www.healthmap.com www.medstat.med.utah.edu/k w/ms I hope these help some! | /| —- —– | / | | | | | ~~~~~~~~BECK~~~~~~~~ | | | | | | "Yesterday, all my troubles seemed so far away…….. | | —- —-
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Avonex was found not only to reduce the frequency of exacerbations, but also to reduce the development of disabilities. Paul from IL In a message dated 97-04-13 19:29:56 EDT, you write: <snip> << 2) As for the Avonex question, it has been shown that starting a drug like Avonex or Betaseron can help reduce the frequency and severity of MS exacerbations. Sooner seems to be better than later. They are very similar chemically, and vary mostly in the injection methods and a few of the claims the manufacturer make… But your doctors can fill you in on all of that. There is also another class of drugs recently approved, Copaxone. <snip> >>
Response:
Welcome to the group. I know you will find a lot of support and caring here. I developed ms symptoms in my early twenties too. I am now 54. I had symptoms that went away except for fatigue and didn’t have any problems until 15 years later. Hopefully you will not notice any problems for a long time. Kathy G.