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Old 02-01-2010, 04:57 PM   #1
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Brief Q/A for the Fully Diagnosed/Experienced people.

This is a really brief Q/A for all you brave and sharing people to help others to know and understand a little bit better what MS is, directly form the mouth of people which are really dealing with this condition, and not form a medical article or reference.

It's easy to misunderstand, when reading a medical article, what tingling, twitching, weakness or clumsiness really mean(just to mention a few common MS symptoms), so if you want to be more specific on that when you answer, it would be nice too.

Feel free to answer/suggest(or not) anything you want to:

1. What were your first three symptoms? Did they came all together or one by one?
2. How was your DX confirmed?
3. How does your symptoms/condition have evolved since, and how does this evolution has progressed, in days, weeks, months?
4. What's your main issue(Physically) with your condition right now, and does it has a specific trigger?

Thank you.

Last edited by stargrave; 02-01-2010 at 04:57 PM.

 
Old 02-01-2010, 06:07 PM   #2
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

I am happy to answer. I have been officially diagnosed with MS since 2003,one month shy of my 23rd birthday, probably living with it for many years before that.

1. What were your first three symptoms? Did they came all together or one by one?

My first symptom, as far back as when I was a child was that I had absolutely NO balance. I fell all the time. (but in the 1980s, what pediatrician is going to think that a child has MS?) Later, as an adult my more acute symptoms came on very suddenly. My first symptom as an adult was that one morning I woke up, and out of the blue I had no feeling on the left side of my face. NONE. You could divide it right down the center of my face. On the right side I could taste and feel, on the left side I couldn't. Then immediately after that came Optic Neuritis, also on the left side. Around the same time, I began tripping all over myself and slurring my speech. My Ophthalmologist was the one who told me what all of this meant.

2. How was your DX confirmed?
I had a Brain MRI which immediately showed several active lesions. Then to confirm it, I had a lumbar puncture.

3. How does your symptoms/condition have evolved since, and how does this evolution has progressed, in days, weeks, months? With treatment, my Optic Neurits subsided, I regained the feeling in my face and my speech returned to normal. This took quite a few months after being treated with IV steroids and getting on Interferon. What has gotten worse is the spasticity in my legs. My legs are extremely stiff all the time, I get cramps and muscle spasms. I am also extremely fatigued all of the time. My cognitive abilities have also diminished. I'll say I am going to do something, and then two seconds later totally forget what I wanted to do. This happens all the time.

4. What's your main issue(Physically) with your condition right now, and does it has a specific trigger? My main issues are the spasticity in my legs. My legs are extremely stiff all the time, I get cramps and muscle spasms. I am also extremely fatigued all of the time. My cognitive abilities have also diminished. I'll say I am going to do something, and then two seconds later totally forget what I wanted to do. This happens all the time. My specific triggers would be heat and stress.

Even with all of my symptoms, I am still able to lead a fairly normal, active life. I am very grateful to still be walking and talking. If it wasn't for the most fantastic Neurologist/MS Specialist in the world, I would be much worse off than I am.

Last edited by purple2067; 02-01-2010 at 06:09 PM.

 
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Old 02-02-2010, 04:15 AM   #3
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Hi Star- here are my answers:

1. What were your first three symptoms? Did they came all together or one by one?
I first noticed balance issues- tripping over my own feet, having people joke and say "first day with the new shoes?" and as a dancer, realizing that my performance was off...my second big change was heat sensitivity. I wasnt able to get out of a hot shower and blow dry my hair without breaking down in tears...and sweating myself into dizziness. This dizziness also affected my cognitive thinking. I actually made myself stupid by overheating! My big issue, which took me to a doctor is i woke up one day with complete numbness in my left hand and fingers...it lingered for more then 3 days and it was a painful , tingling pain- shooting up into my arm. I was terrified Id had a stroke and went to my doctor on day 3.

2. How was your DX confirmed?
Because I was convinced Id had a stroke, I went to the doctor, who sent me to the ER and ruled a stroke out. HE figured it was carpal tunnel, so I was given an EMG, which was normal. Then, they figured it was a pinched nerve and I was sent for a CT scan. IT was the radiologist who noticed abnormalities and called in a Neurologist to take a look. The Neuro had me in a MRI within an hour and in his office the following day for a discussion. I was told it was 99% sure it was MS due to having over 50 lesions on my brain. The Neuro also ordered a Spinal Tap, which was normal and then sent me to a MS specialist to confirm what he thought (along with all my test results) and the MS specialist confirmed MS . The whole thing took less then a week!

3. How does your symptoms/condition have evolved since, and how does this evolution has progressed, in days, weeks, months?

I started Copaxone immediately and within a week almost died from it. I stopped breathing several times and wound up in the ambulance being revived twice. They took me off Copaxone and started me on Rebif 2 weeks later. Since then, Ive been on Rebif almost 5 years now. I havent really progressed at all. Ive had a few bouts with Optic Neruritis in the first year. I was on IV steroids for that. Ive had really bad days, where the legs hurt and the whole body is tingling and in pain. Ive had days where the mornings are actually scary- wondering how my balance will be when first putting my feet on the floor..my first few minutes I sometimes feel like my head isnt attached to my body, but as the morning goes on, better. Im the girl who does too much! I overdo it at work, which is incredibly cerebral and emotional. I ride my horse on weekends, I travel constantly. I go to school (Doctorate level), I have 3 kids. Id say Im extremely lucky that Rebif is working as well as it is. From a radiographical standpoint, I have not had any additional lesions...

4. What's your main issue(Physically) with your condition right now, and does it has a specific trigger?
Still have the heat sensitivity. I have to avoid overheating at all costs! My yearly vacation in the carribean is always in March, when its 80 and not 95 degrees. And as long as I stay in the pool, or keep my feet wet, I can deal with it...No more hot showers, no hot tubs or baths EVER.
I cant wear too many clothes, even in the winter, my body overheats, it then goes numb! I lose the ability to be balanced and my gait goes off when I overheat. A huge trigger for me is stress. If I allow myself to get stresed out at work, or even with my family, I can feel the pain in my hands/ fingers worsen. Its been almost 5 years now and I have permanent nerve damage, caused by a lesion in my brain in my hands. I have to use voice recognition software 95% of the time, because typing is impossible. tough, especially when writing 500 page college papers! My balance isnt improved. Gone are the days of high heels with my business suits...I have to wear flat shoes. And mostly the exhuastion......the MS fatigue does me in. I go to bed by 9 pm and am up at 6 am, and even then, I often find myself having to pull over during the day and rest my eyes....my job is a ton of driving and traveling.

I think MS is one of the MOST manageable diseases a person can have. I also know first hand that if I had to develope an illness, Id rather have MS then 99% of the other diseases out there. Since I deal with terminal illness every day of my life , Ive learned to be grateful that MS is my issue....It hasnt changed me. In fact, its made me more aware of my body and my health. I eat right, I exercise 6 days a week- I take the right supplements (fish oils and Vit D) I learned to stay away from junk supplements like anti-oxidents and ecchinacea. I live a very full life and concentrate on GOOD days and not bad ones. Its a horrible sad thing to say, but now adays, if a person is told they have MS, its the BEST time to hear it. TEN years ago, we didnt have all the drugs which slow down progression. Back when people were first dx, it was literally "too late' for them to start these drugs by the time they were on the market. But, now, if you start a drug quickly and stick to it- there is much hope that it will work and you will live a normal life. Im living proof that they do work for relapsing/remitting MS. Maybe Im a statistic, but Im one of the good ones!

Hope this helps.
Nikki
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Last edited by MSNik; 02-02-2010 at 04:39 PM.

 
Old 02-02-2010, 07:54 AM   #4
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Thank you Nikky and Thank you Purple, very interesting answers, filled with first hand knowledge.

The reason of this Q/A is to show to many undiagnosed people that, it appears that there are clear and common(almost textbook) pathways for the disease: heat intolerance, optic neuritis, balance issues, to name a few that came out form this first answers. And the chances to have both MS and on top of that an atypical MS case where symptoms and their progression is completely different, are VERY SLIM.

This means that if you have, for example, just balance issues, or just some tingling, it might be something else, and not necessarily MS(Or worse). My neurologist told me that an idiopathic(no clear cause) benign neuropathy(not related to a degenerative or metabolic issue), can last weeks before it's resolution.

And even if it happened to be MS, which as you both mentioned, it needed to go through certain clear symptoms and steps before it was confirmed, it's fortunately a quite manageable condition when you're both disciplined and in good hands, I'm glad for both of you.

I'm just trying to give some peace of mind to many people out here, which like me, tends to search for a whole array of diseases to explain their symptoms.

Finally, as an extra question, from what you've answered, I'd like to ask this:

5. How do you sleep, too much, to little, nightmares, anxious? I asked this because I made a little finding(for me that is), that's not common reading in the many articles out there: you told me that you feel worst in the morning(and the rest of the day was better), but even more curious to me: it was in the morning when you both felt your first huge symptom onset, that drove you down to the doctor, in both cases.

I don't know if there is an explanation for this, or if you know what is the correlation here, but it is quite interesting.

This would be my last question, and any other MS diagnosed people is also very welcomed to answer this brief Q/A, thank you all for the answers.

Last edited by stargrave; 02-02-2010 at 07:55 AM.

 
Old 02-02-2010, 02:08 PM   #5
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Star, Im going to offer you some words of wisdom, which I hope you will accept with the spirit of which they are meant....just to inform. Definately not to criticize...

MS is very common. Over 500,000 people in the US have it alone. Many more cases are found in Europe and Australia! No two cases of MS are ever documented to be alike....yes, there are certain symtoms which many of us share; however every single symtom that I, and the other poster mentioned, can be caused by NUMEROUS things. And no one else in the entire world has presented exactly like me, or any of us- in the exact same order- with the exact same symtoms!

You wrote: The reason of this Q/A is to show to many undiagnosed people that, it appears that there are clear and common(almost textbook) pathways for the disease: heat intolerance, optic neuritis, balance issues, to name a few that came out form this first answers. And the chances to have both MS and on top of that an atypical MS case where symptoms and their progression is completely different, are VERY SLIM. I completely disagree with this statement. Those so-called Textbook answers you mentioned are indicative of over 500 diseases and hardly pathways to MS.

The one thing we ALL have in common is the path to finding out if it is MS or not. Having been on the boards for so long, I can honestly tell you I remember many more cases of people posting who were SURE they had MS based on their symtoms, or from their reading- only to later discover it wasnt. Actually more people DO NOT WIND up getting the dx then actually do.
The path is the same for all of us. Rule out everything else. Have the MRI. Many of us also have EMGs to see how the nerves are conducting....LOTS of blood work, to rule out infection and deficiencies. Many docs recommend a LP or Spinal Tap, not soo much to see if the Obands show up (which usually dont show and is always inconclusive) but to also check for Infections of the Brain...PML- Meningitis, they both present much like a MS relapse! Most of us have visual tests- especially when optic nerve issues are the start of our problems. But you know what Im saying, dont you? ITs the same for everyone in the end.....you cannot get a MS diagnosis without having met the criteria.

For many people, it takes years. For people like myself, days.....you mentioned how in both cases we discovered the problem in the morning. Not exactly true. I went to sleep the night before feeling like I was getting sick. Thats it- no real issues, just feeling lousy. Woke up with a numb hand and fingers...this is the reality of the disease. It doesnt "just strike you". Warning signs happen for years sometimes, which we ignore, or dont associaite with a real problem. The summer I spent crying on the bathroom floor because I was overheated- it NEVER dawned on me that I had a neurological condition, and it wasnt until they started the History and Physical that I even realized that it had been a warning sign. But, the MS nurse who took my history knew the exact right questions to ask....

You spend allot of time trying to figure this out. And, boy do I wish you could. The most brilliant minds in Science and medicine have yet to figure this out. Until someone comes up with a cause, no one can really come up with a cure. In my 5 years, Ive seen more "miracle cures" happen, none of which have panned out. Ive seen Tysabri come and go and come back again...Ive been told that "any day now" there will be a oral Interferon to replace my shots, and yet it still hasnt gotten past stage 3 of the trials.... Point being, this isnt going to change overnight. Bless the wonderful people who dedicate their days to researching this disease! I just dont expect them to figure it out in my lifetime...

Meanwhile, having read over your post several times, I see a TON of anxiety in your words, and you are looking for answers, common denominators which really dont exist. They call this the snowflake disease for a reason. No two cases are alike....so please dont stress yourself out looking for answers that you probably wont find....ask all the questions you want, but dont look for OUR answers to mirror YOUR future!

To answer your 5th question: I sleep just fine. Actually I fall asleep exhuasted, because I put in 18 hour days most of the time. I go to bed early and wake early. But I always, ALWAYS feel my best in the morning...I get off to a good start and as the day drags on, I find myself fatigued and usually more stressed, with more symtoms (due to the stress). By early evening, Im exhausted. And, thats when I go to school....so for me, this is self inflicted. Im doing too much!

Another thing Ill mention on that subject is, the longer you have this disease, the less it stresses you. We go thru stages, denial, anger, the "why me" pity party- then acceptance. I tell everyone one year from the time they are dx, they will be a different person, with a different outlook. They all tell me Im right. Not too many of us worry about this day to day, because having MS is never consistent. We just accept that we have it , listen to our bodies, try to let whatever may come- come....and for some of us, take out shots and pray that they are doing what they are supposed to do.

Does this help?? I wanted to help you understand that the common issues, are really not that common- and in the end mean very little since its always changing...and that these exact same symtoms that we wrote about, are not specific to MS- they can mean anything...

Hugs,
nikki
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Last edited by MSNik; 02-02-2010 at 06:08 PM.

 
Old 02-02-2010, 08:43 PM   #6
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Hi Nikki.

I don't feel any criticism, all the opposite, your input is both helpful and welcomed every time.

And obviously I'd be the first in the line of people looking for answers about his symptoms, remember that I started looking for TIA symptoms.

Is clear to me that there are not absolute answers which can cover and explain all of our symptoms, as sometimes even after tons of appointments and tests, it's quite hard to pinpoint a precise DX, more so in terms of neurological conditions which share a bunch of similarities between them.

This little Q/A was intended for having basic input from people who actually has dealt with this condition, which I believe is better than reading tons of medical articles, that summarize all symptoms of one condition in two lines, leaving you with more doubts than answers.

Obviously this is no substitute, for a professional evaluation and/or test, to rule out or confirm MS, but I thought it would be clearer for people like me, how does this condition, looks like from the eyes of the people who really knows how it is, and on top of that, that have already learned how to cope and carry on, something that by itself is good enough to give us a better mood.

 
Old 02-02-2010, 10:56 PM   #7
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Star, im glad you understood what I was trying to say...

I hope you will get more input here from others. Because this disease has so many stages, and because it affects each of us differently, it starts differently as well for many. Many MSers are not in the same condition as myself or the previous poster...many people are dealing with significant symtoms which affect them completely differently.

You are correct. There is no way to substitute a professional examination and subsequent testing. Its the only way to truly know what one is dealing with.

I have read many of your posts, both on this board and others here on Healthboards, and I realize the tremendous stress you are under to find answers. Keep searching! You will get your answers! Only you, can be your own health advocate!
Wishing you the best,
Nikki
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Old 02-03-2010, 08:21 AM   #8
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Yes Nikki

I might have get some medical degree after so much reading.

I do have recognized a pattern, It happened to me when I got struck by Vertigo back in 2006, until I took control, and in the end I did have some mild vestibular issues, but my mind created a whole ordeal of fear and suffering, that I just recently(last year), I conquered.

A part of me knows that this might be my body/worries/etc, sending me something new to cope with.

Whatever happens, I'm decided to get some help with this clear cut anxiety problem, even my internist friend told me that he was convinced that was the case. But until I accept it completely, I'll keep searching for answers everywhere.

Because every time that even a mild physical ache shows up, specially when it's something new(like this time) I will transform it into a full powered nightmare, with me, searching for answers everywhere.

Thanks again for your input.

Last edited by stargrave; 02-03-2010 at 08:22 AM.

 
Old 02-12-2010, 05:54 PM   #9
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

I spent 2 yrs being in denial.It took a while to get a diagnosis.I was going to a neurologist who got into trouble and wasn't allowed to practice.It was 2002 before I FOUND A NEUROLOGIST and that is when I started REBIF.The first symbtoms whole side went numb and couldn't walk for a month.I ended up in a wheelchair in 2007.My age is 37 yrs old.My name is NADINE.

 
Old 02-12-2010, 07:46 PM   #10
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Denegirl, please introduce yourself in a new post. Id love to hear more about you and your situation! I grew up just next to Marcus Hook in Media......anyway, Im sorry you went thru denial. Its a bad place to be.
You say you are on Rebif....how is it working for you? Let us know how you are now....and welcome to the boards.
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Last edited by MSNik; 02-12-2010 at 07:47 PM.

 
Old 02-12-2010, 11:00 PM   #11
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

I have been married since 2003 and have a 4 yr old daughter.In 2004 I lost a baby at 6 months.When I WENT FOR MY 4 month ultrasound it told me I was going to have a boy and get the doctor something is wrong.The doctor came in and said you have a sick baby and the odds of the baby surving were small.I decided as long as the baby had a heartbeat ,I WAS CONT. THE PREGNANCY.The baby had non-immune hydrops and cystic hygroma.For at least 1-2 months I didnt know I was pregnant and taking my REBIF.Because of losing the baby,I was consider high-risk.I had to go to a specialist at least 1 a week.SHE WEIGHED 5-14 0uc.The whole time I was pregnant the m.s. was great.

 
Old 02-25-2010, 11:26 AM   #12
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Nikki...Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Nikki, Regarding.... the word 'consistent' in the third paragraph which I marked (confused). (Consistent), did you mean the persons having MS symptoms would always be changing and never remain the same? in a person with MS?. I would appreciate your reply please. I realize my question sounds a bit lame but need to understand just what you meant.
Ave,

Quote:
Originally Posted by MSNik View Post
Stargrave,
Meanwhile, having read over your post several times, I see a TON of anxiety in your words, and you are looking for answers, common denominators which really dont exist. They call this the snowflake disease for a reason. No two cases are alike....so please dont stress yourself out looking for answers that you probably wont find....ask all the questions you want, but dont look for OUR answers to mirror YOUR future!

To answer your 5th question: I sleep just fine. Actually I fall asleep exhuasted, because I put in 18 hour days most of the time. I go to bed early and wake early. But I always, ALWAYS feel my best in the morning...I get off to a good start and as the day drags on, I find myself fatigued and usually more stressed, with more symtoms (due to the stress). By early evening, Im exhausted. And, thats when I go to school....so for me, this is self inflicted. Im doing too much!

Another thing Ill mention on that subject is, the longer you have this disease, the less it stresses you. We go thru stages, denial, anger, the "why me" pity party- then acceptance. I tell everyone one year from the time they are dx, they will be a different person, with a different outlook. They all tell me Im right. Not too many of us worry about this day to day, because having MS is never consistent. We just accept that we have it , listen to our bodies, try to let whatever may come- come....and for some of us, take out shots and pray that they are doing what they are supposed to do.

Does this help?? I wanted to help you understand that the common issues, are really not that common- and in the end mean very little since its always changing...and that these exact same symtoms that we wrote about, are not specific to MS- they can mean anything...

Hugs,
nikki

 
Old 02-25-2010, 04:18 PM   #13
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

huh. Hi Ave...
Maybe I should have said the SYMPTOMS are never consistent. Would that have been less confusing?

The context of what you asked me about was about anxiety and the fact that the longer you have MS, the less you allow all the "little changes" (the inconsistencies) to freak you out, or make you anxious. I truly believe that in the beginning - most of us think a pulled muscle is MS, body aches from the flu are MS, even headaches can be attributed to MS...when in reality, they are exactly what they appear to be. A actual muscle strain or the actual flu, or a real honest to goodness headache! This poster, was asking about the incredible amount of symtoms he had- and my point was that some of those could be attributed to MS, while just as many could actually be caused by a NON-MS reason. The poster was also looking for similarities in diagnosed peoples disease, trying to match those symtoms to his. My point was that this disease is SO individual, that trying to do so, will not result in a diagnosis, but in even more anxiety. Keeping in mind, my first paragraph which was in response to the post. Also, if you have read this entire thread, you might note that this person is not Diagnosed with MS, is trying to find a diagnosis for himself based on symtoms and has extremely high anxiety about what his body is putting him thru..

Now, let me talk about only MYSELf for a minute. When I first was dx, my symtoms were strictly numbness and tingling in my hands and fingers. For the past 4 years, Ive added the MS hug, weakness in my legs and feet, Optical Neuritis, muscle spasms and decreased (yes decreased) fatigue- I can also attribute some cog fog and short term memory loss and also direction disorders...HOWEVER, Ive never had these symtoms all at once- and none of them have lingered for more then a few days- so this is what I consider never being consistent. I can go to bed feeling fine and wake up with muscle weakness (even coordination issues) and the opposite, I can go to bed exhausted- get a good 9 hour sleep in and wake up feeling terrific! Its never consistent...MS is not a consistent disease. Its a progressive disease, but statistically speaking, taking the DMDs is supposed to prevent progression which is why I mentioned that after time, when we are more used to having this disease, most of us start to relax, stop fretting about every little thing, and pray that our medications are working. Thats all we can do, right?

Ill also add that for myself, one year after my diagnosis, I started to relax..I stopped believing that I was going to be in a wheelchair within a year- I stopped worrying that everytime my body hurt, I was relapsing. I mostly stopped worrying about the "What ifs' of this disease. Those fears still exist, but I dont harp on them every day, nor do I exert any more energy then I have to worrying about it.

Does this make any sense? Did I clarify for you what I meant?
Nikki
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Last edited by MSNik; 02-25-2010 at 04:31 PM.

 
Old 02-26-2010, 09:18 AM   #14
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

The Rebif is working pretty good.I have lived in Marcus Hook most of my life except a small period I lived in Boothwyn,and Linwood.I recently had blood work and it showed my red blood cells being low.So know I have to get Vitamin B-12 shots one a week for month,and then once a month.Im 37 years old,mother of 4yr daughter and married to wonderful man for 7 yrs.My mother died in 1994 from Cancer.Nothing new has happened regarding the M.S.

 
Old 02-26-2010, 12:50 PM   #15
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Re: Brief Q/A for the Fully Diagnosed/Experienced people.

Denegirl- glad to hear you are stable...I am a GV graduate. You know what that is, right?? I left that area when I was 18 and never looked back! But I still have family in your neck of the woods..
Im glad to hear the Rebif is working for you. Me too! Let us know if we can help you..
Nikki
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