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#11 | ||
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Junior Member
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I really want thank all of you for the responses, I literally have tears. I never knew anything about MS and when people spoke about it, I just thought "oh yeah, that disease that puts people in wheel chairs" and I feel so ignorant that I've always had the "will never happen to me" attitude. This has opened my eyes to reality, and for that - I am extremly thankful.
The neuro called today, stated I have MS and cant make an appt for 2 weeks to go in an see him to discuss treatments but he asked if I could go to the hospital today to start steroid treatments for 3 days. I asked to start is next week because I dont know what benefit that will bring me or any knowledge of the side effects so wanted more time to digest. In the meantime I called an MS center in Boston (where I live) who schedules 6 weeks out but I actually got an appt for this Friday due to a last minute cancellation right before I called, so I am looking forward to that and busy writing down questions. Funny thing is is that today I felt very dizzy, nauseaus and off balance a bit. Im sceptical to think that this is all of a sudden and too cooincidental to happen on the day of my diagnosis, so im really confused because I dont know if Ive felt like this for a while and ignored it and passed it off as something else or if it really did just start today - either way its real and im very scared now. Thanks guys for letting me vent and talk about my experience. Trying to find the courage now to tell my boss. Thank you very much again. ![]() |
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#12 | ||
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Magnate
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Jodi,
Might be best to hold off telling your boss until you have more definite results. Also, you may be more informed yourself and find a way of better explaining what this means. Try not to add this to extra worry at this time. Ger) |
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#13 | ||
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Senior Member
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Hello Jodi2225,
Welcome to NT, where friends who understand what you are going through, and may go through in the future are never far away. Please keep us posted on how things unfold. If I have learned one thing about this disease after 34 years, is that it affects each person differently; and although the journey through diagnosis and treatment may be difficult at times, so too can it be a path of personal discovery. Please know that we are here for you with an open offer of sincere and compassionate support. With love, Erika |
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#14 | |||
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Member
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Hi Jodi
I echo what Erika said so beautifully in her post. Welcome and enjoy the support and friendships you will make here. This is a lifelong journey, and having people to turn to that do understand is a godsend. Lyn
__________________
Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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#15 | |||
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Member
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Hi Jodi,
Welcome to NT. I'm sorry that you have to be here. It can be very scary in the beginning. I'm so glad that you lucked out and got an appt. at the MS clinic. Because it is so overwhelming in the beginning people usually have a lot of fear and anxiety. I was deathly afraid of ending up in a wheelchair. Just remember that everyone's course of the disease and experience is completely unique. 5 years later I have not had a relapse and am still just as mobile. That may change but i don't see any evidence of it yet. Since my diagnosis came out of the blue with no warning I had a lot of anxiety about every little thing in my body. You become hyper conscious of your body. It turns out that many of the "symptoms" I was having that I was convinced were MS turned out to be anxiety attacks-such as tingling in my hands, feet, face; dizziness; nausea; headache. You can literally will yourself into having physical manifestations of anxiety. Grieving and crying is also normal because of what you feel you have lost (your old healthy self). I tried to educate myself but not read obsessively on the topic because it could trigger panic attacks. I found a book by Margaret Blackstone to be very helpful and soothing. http://www.amazon.com/gp/aw/d/156924...6477843&sr=8-4 I read it over and over again until the book got stained and wrinkly! It offered the perfect amount of information and was a little bit more on the hopeful side which is what I needed in the beginning. You will find this forum to be very supportive. Don't be afraid to post your concerns, questions etc. Take care, Natalie PS: not sure why there is a winking face at the top! Also read the book above before you tell your boss. I would recommend on holding off until you know more about the disease and can really take stock of where you work and how people will respond. Quote:
__________________
On Tysabri and love it. . |
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#16 | |||
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Member
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When my neuro first told me that he suspected I had MS (my very first visit), I was completely shell-shocked. I came home and searched through all of my old textbooks that I had left over from school years before. We didn't have the internet (we didn't even have a computer).
I didn't know anyone with it, I didn't know anything about it. What I found in my book was along the lines of 'Multiple Sclerosis is a progressive neurodegenerative disease, whereby most sufferers have progressively worse and worse attacks until they lose all control of bodily functions such as walking, eating, use of bowel and bladder. Ultimately, most sufferers will be forced to move into nursing homes, and life expectency is dramatically reduced as a result.' The book was a biology textbook, probably first published in the 1970's. Of course, I cried and cried and cried. It was only a few days later when I went to the library, I was able to see a clearer and more optimistic prognosis for most people. Of course, all of those terrible things can happen, but if ever you were going to diagnosed with MS, now, with all of the drugs and research that is going on there is so much more hope. Here I am, 11 years post diagnosis - walking, and doing almost all of the things that I used to (the important stuff anyway). I have a been a very long time since my last major exacerbation, I have been lucky and life is pretty good (right now anyways - let tomorrow take care of itself). Regards Lyn PS I threw the book in the bin where it belonged!
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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#17 | ||
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Member
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You must follow the advice about waiting to tell the boss about definite dx, unless you and boss are on such good terms that you confide intimate things.
The person who said we have different paths in MS is right. I am still walking, decades after my first symptoms, but I do walk with neuropathy pain because of a late dx and improper drug treatments, and of course, just because I got older. I am in a wheelchair only to help me reach low shelves in my house; it is my husband's wheelchair, who died three years ago--it is a great way to reach low shelves if you are too stiff or unbalanced to squat. I am not sure if MS is the only disease that causes brain scars. As most know who know me here, I did have many brain scars at diagnosis, and they moved around. Then I was dx'd later with Porphyria. Sometimes Porph causes brain scars (rare to cause them) but I have a theory that Porph sometimes is a disease in which a chemical can cross the brain barrier and cause MS. This is my theory and I am not trying to get anyone to agree with it--it's just a result of my own peculiar (very peculiar) life path. For a while I thought I had only Porph and maybe not MS, but now I am convinced I have both, and that is why I find this forum so helpful. Thank God for you Neurotalk people. The advice to get insurance now is absolutely right. I got long term disability through work when I realized I MIGHT not be able to work to retirement, and it did kick in immediately when I had to go on disability suddenly, and still pays me a small stipend every month even though I am now on Medicare and retired. Bless your journey. |
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"Thanks for this!" says: | Jodi2225 (09-01-2012) |
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#18 | ||
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Junior Member
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Thanks all again so so much - I went to the MS center yesterday and they confirmed the MS and recommended steroid infusions immediately (i start next week) and then recommended copaxone on a regulare basis - I know nothing of the steroid infusions and the copaxone - ive been reading dilligently - any insight from you guys who have been through it would be helpful. My biggest question is will I be able to drive after the steroid infusions? I have to work right after....and I dont want to have to take 3 more days off
![]() Im slowly digesting everything, its definately a shock. My MRI reports became availible online for me last night for me to read and I am very upset that when I went for my brain/t-spine MRIs they put on the form that my "clinical history" is 'MS' when it is not - I told the nurse that I was there to be "tested" for MS - So my head is spinning with the thought of the radiologist passed my lesions off as MS lesions without doing his due dillience because he was given an incorrect medical history on me. My family of course thinks im in denial, but I am not - I just have a lot of questions, and I think thats normal? Im headed out to buy a kindle fire to read the book that was suggested and to read some positive thinking books so I can remain positive, it feels like I am on a roller coaster of emotions right now and im scared im going to lose control. Im sorry if Im posting too much, I swear being able to talk to you guys helps me more than talking to the doctors because you guys just put it in perspective, I really appreciate it. Thank you. |
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#19 | |||
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In Remembrance
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Welcome to the MS club....sorry, but at least you know what you're fighting.
Copaxone is helpful to some in cutting back on the MS attacks but not on most...it didn't stop my progression. My advise try it and see?? Working is okie dokie. I don't recommend steroids, they only help to possibly shorten your attack, but can be harmful to your body in large/prolonged use. The only thing is you don't know if it worked until, sometimes, weeks after you stop taking it. In the meantime, nervousness, sleeplessness and agrivation are side effects. Working? Up to you? Neither one is a cure, so It's your choice, if the Copax isn't working, stop it!!! I hope Copaxone works for you and you are feeling better soon. ![]()
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#20 | ||
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Junior Member
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Hi Jodi
..I just wanted u to know that when i got my MRI report it "also" said "History of MS".... ![]() ..then i thought to myself...maybe they do that for insurance reasons.? ... When i went to the Neuro Doc I NEVER ever thought i had any signs of MS.! I did have a tiny bit of numbness that would come and go on my face/jaw area. I am starting to come out of the Shock of this all...i just had the spinal tap a few days ago and tomorrow i will pick up the report. I am 90% sure i got it. But i Don't want it...!! ![]() Since the Neuro doc has said probable MS ...Now i am feeling weird tingling in my legs and hands...Just an awful feeling..!! Please keep me posted on when and if you start the steroids and the Copaxone.... ( I am Very scared- i dont do needles) |
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