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Old 02-04-2009, 10:51 AM   #1
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Default MS diagnosis in-have questions for others

Just wanted to let those who had replied to my thread on LPs that Mayo doc's opinion is that I do have MS-no LP required at this time. He reserved final say on that, as well as possible drug treatments, based on what happens with disease progression in the future, since as of this time, my progression has been slow and not debilitating. But, a couple responses to my other question have me wondering a couple things:

How many of us with MS have siblings or other family members with it as well? My only sister was diagnosed with it over 20 years ago.

And, what type of symptoms do others here get? And, how frequently do the relapses occur? Each year, I get 3 or 4 episodes that last about 4-8 weeks and usually progress through difficulty swallowing; numbness/tingling in legs, back, abdomen, itching on back; urgency with bladder/bowel, then remission except for tingling that is always in my feet and lower legs. New this time was numbness around my lips. And, getting hot and exercising always make my legs, back, rear go numb and tingly whether I'm in the middle of a cycle or in a remission.

I really would like to hear your answers and get to know you all better as well! Thanks in advance

7/18/12 became wheat- and dairy-free @ 235 pounds
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Old 02-04-2009, 10:54 AM   #2
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Oops - thought of another question

Do others treat you differently? My sis says that many of the people who know (and she doesn't tell many about her MS) treated her differently when they found out. Some want to baby her and some seemed to get mad and not want to be with her anymore.

7/18/12 became wheat- and dairy-free @ 235 pounds
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Old 02-04-2009, 11:51 AM   #3
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I have a lot of those same symptoms with MG, Myasenthia Gravis. They are in the same family of disease.
I dont have any advice but just want to say I somewhat understand and (((HUGS)))
Weight lost since starting back on 12/2/2009
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Old 02-05-2009, 05:28 PM   #4
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It's interesting that your sister says people treat her differently when they find out she has MS; different people will react differently, I think. Some people have a hard time dealing with people who have any type of serious illness or physical challenge (formally called disabilities), becuz they feel so bad for them.

Conversely, that is exactly why some people seem to want to nuture them, albeit too much sometimes. However, I have seen people diagnosed with MS and other things (like cancer), who's attitudes have changed very dramatically, hence the varied reactions from others.

I have seen a range from constant rage and anger (which scares others); to perpetual selfpity-parties (which makes people feel helpless); to accepting their illness and doing the best they can; to those like yourself and one friend I have, who choose to look at life with a more hopeful and positive view: i.e. I am relatively well now, and am going to enjoy every minute of my life while I can.

Now, don't get me wrong, I understand that some people react differently to being diagnosed with something like cancer and MS (can't blame them really). I'm just explaining what CAN happen, and I feel GREAT compassion towards them ALL! I've worked in four nursing homes plus some group homes so I have worked with people with many different kinds of ailments like MS, CP, MD, and so forth.

I don't tell everybody that I have Spina Bifida; and it may only come up now and then. I prefer not to dwell on that, and I try to focus on all that I CAN DO, instead of the limitations, although they are real. Sometimes, I do have to talk about them becuz they do affect my life on a daily basis; and I suppose, this may even be more pronounced for someone with MS.

We had a family friend growing up who had MS and her name was KAY; and she was such an awesome lady. I felt so bad for her that she got this disease ~ I was only twelve y/o at the time and wanted to know why GOD had allowed that to happen to her (her husband was a minister). What was her response? She shared with me her hope in this way: she pointed to a plaque on the wall above the head of her bed that had THE SERENITY PRAYER ON IT! I never forgot that, and now I have one hanging in my home (a gift from a dear friend). That prayer has gotten me thru so much in my life!

Well, I know I don't have exactly what you want to know, but I just wanted to share with you that we just never know how GOD may be using us or YOU to give hope to others who have to deal with problems down the road. GOD used a lady who had MS to form an image of Eternal Hope in my childhood mind that has lasted my entire life ... and Blessings to you and yours!
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Last edited by Justwant2Bhealthy; 02-05-2009 at 08:23 PM.
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Old 02-05-2009, 08:43 PM   #5
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family members with MS: no others

types of symptoms: first symptom was optic neuritis for me. I had some pain and lost some vision in an eye... since then I've experienced vertigo, dizziness, weakness, vibrations (like i feel like my leg is shaking but its not). numbness, tingling, cognitive fog/confusion. AND DEPRESSION. I found losing 100 pounds, daily MILD low itensity exercise, along with yoga and healthy eating has really helped me manage symptoms.

I had to learn how to manage stress differently.. but it has really helped my ms. I also take medication (in fact i need to go take a syringe out of the fridge to warm up it's a shot night).

do others treat me differently: I"m in full remission and have been for a year now. (at first i was relapsing every 4 months.. then every six.. then every time i got a cold.. now it's better) People treat me the same as anyone else. Some laugh at me when an MS symptom changes the way I speak because I look healthy otherwise and they dont connect MS as the reason for my quirks.

People that have seen me in 'an MS flare' have been very kind. Most women get motherly (I'm a young adult). The people that dont 'look out for me' are the ones that just ignore everything. Pretend I'm not slurring or tipped over etc.

and house is an awesome show. i love how every other diagnosis is MS (ok so i'm a sarcastic laugh at life sort of person) I think it's a good example of how MS is diagnosed - no idea what's going on. no idea how it started? must be MS!

take care

I can't be perfect but I CAN persevere

Last edited by valpal23; 02-05-2009 at 08:44 PM.
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Old 02-07-2009, 12:08 PM   #6
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Hello Ronni

Family members with MS:- None

Types of symptoms:- The first I experienced is tingling, numbness, loss of sensation in different areas of my body. I have marked weakness down the right side of my body and now walk with a unique strange gait ( so I look as drunk as a skunk at times as i can't walk in a straight line ) Cognitive dysfunction which include short and long term memory. Forgetfulness and slow word recall. I am tearful at the slightest thing but I am not depressed. I have fatigue which I find difficult to deal with. Also I have L'Hermitte's ( I think that is how it is spelt) which is like an electric shock sensation on lowering my head.

How often do your relapses occur:- For me relapses have been infrequent a lot in the very beginning I would just get over one episode to be floored by another. Then I have gone 9 years without one to have 2 last year which came out of the blue. I have secondary progressive type of MS so fortunately I do not have many relapses but just a general decline in my mobility etc over time.

Do others treat me differently:- You get either end of the spectrum I find. Either they try to do everything for me ( a kind of mothering I suppose is the best way to describe it) and others who have no consideration ( tend to bury their heads in the sand). I have been very open from day one from getting the diagnosis and told people I have MS. I have never hidden it from the world as personally I could not deal with it that way. Though I do appreciate that it a route others use to deal with this condition. I may have MS but do not dwell on it I do not let it rule my life anymore than I am forced.

Last edited by purpleorc; 02-07-2009 at 12:11 PM.
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Old 02-27-2009, 09:21 AM   #7
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MS in a family member? Not a single person.

1st symptoms: Vertigo for 6 weeks (couldn't drive).

2nd relapse 3 months later: Tingling in my toes both feet and tingling in my waist. Seen neuro.

3nd relapse 6 months later: Right arm numb and tingling (couldn't type with any accuracy) balance issues (I fell off the porch, fortunately into the grass). Seen MS specialist at IU.

I've never had optic neuritis. I have occasion eye pain, stabbing-like, and really severe headaches to put me to bed. I do have times when my face will tingle, lips and ears tingle, tingling from my knee down. They may last an hour or two and then is gone. I do have ringing in my left ear, deaf in the right. I have cognitive issues, I have to write everything down or I will forget and it won't get done!

As for others treating me differently - My husband and I have opted to not tell anyone unless absolutely necessary. He even forgets that I have MS when we talk about job losses. I carry the insurance, he farms. At one point he said that I could just work on the farm, but then I have to remind him that we need employer paid insurance.

I'm on medication, my last major flare was in January 2006.

Last edited by Cybertyper; 02-27-2009 at 09:25 AM.
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