I met a lady who was an inspiration to me...

New Topic Post Reply Printable Version
59 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 4:42 AM (GMT -7)   
I shop at a local furniture store. The head lady is a very friendly type of person and at some point that I don't recall I must of told her I had Ms. I stopped in to pay for some recliners and she called her friend that was visiting the store in and said to her, this girl has MS also Barb.
 
The lady sat down and asked how I was doing.  I told her that I experience tons of symptoms daily. She said that on this particular day her face "wasn't right". It appeared ok but I'm sure she was referring to some sensation whether tightness, numbness, burning or whatever.
 
She told me that if I had any bladder problems that instead of cathing to lean forward and (she showed me how to push all around the stomach) help the urine come out naturally.
She told me to get vitamin D, and stressed Not to get a multi vitamin.
 
The furniture store lady smiled and asked me, Isn't she an inspiration? I said well yes! I asked Barb what type of MS she has, of course I would of thought secondary at her age. She said Relapsing Remitting. She walked with no assistance (wish id of asked her which injection) and she looked very healthy and happy.
 
When she left the room for a moment, the furniture store lady said, I've seen her convulse, be not able to talk, unable to walk, but look at her today. I thought she'd be an inspiration to you so when you called to pay for the recliners I gave her a call to come visit the store. How sweet!
 
Before I left, Barb stepped back in and told me to keep the stress out of my life as best as I could and looked at me with an intent eye to eye lock and said, "your body can absorb more than you could ever imagine in pain and sensations"
 
She is 67 and did not have the mildest case as far as having experienced not being able to talk , walk, and convulsing, but she was an inspiration that she was so happy and had i not been told I'd of never guessed anything was wrong with her at all.
 
Thought if she was an inspiration to me , she might be to someone on this board that needs to hear of some who are doing good even thought they've experienced some really bad times with MS.
 
thanks,
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/2/2008 4:46 AM (GMT -7)   
p.s. She received her dx when she was 40. She told me that my age was on my side. I also forgot to say how she first found out. She asked me what my first symptoms were and after I told her , i asked what her's were. She said she was at work one day and didn't feel well when a co-worker said omg Barb! Your face! She said that half of her face was hanging as if she had a stroke. The hospital initially thought that is what she had and maybe she did have a tia incident but the diagnosis of cause was MS.

:)


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/2/2008 4:49:16 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/2/2008 9:30 AM (GMT -7)   

Wow Kiera,

Thanks so much for posting this.  This is a great story.  It is very very inspirational.  It is such a scary thing to not know what your future holds for you.  It is so nice to see others with MS that are happy and doing well.  Those stories give me such hope.

Love and prayers,

 


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/2/2008 9:38 AM (GMT -7)   
I also found your post to be inspirational. At times I get so worried thinking about the future. Thanks!
Barb/mystery reader
Diagnosed April 2007


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/3/2008 3:41 PM (GMT -7)   

Hi there, great post. We do need to talk to and see people who are positive, and project the realm of promise. I was dx just before Xmas this year, after going to doctor after doctor, specialist after specialist for over two years.  It was almost a blessing to find out what the heck was wrong with me - and now I have taken steps to seel if I can manage this disease. I started copaxone two weeks ago - and so far, have had no side effects, etc.

I am 53. I sat down and thought much about this, as I am sure everyone does, and I came up with some interesting thoughts as to how or what could happen to me.

I might go into a recession, and not get many attacks after the drug kicks in. It might stop it from progressing, but it might still progress, but at a much slower pace. That being the case, if it still progresses, but slowly - I might have to walk with a cane when I am 75 years old. As reckless as I am with boats, snow machines, motorcycles, there was a chance that I would be using a cane in any event at that age.

I am glad that I have been dx at this age, apposed to being much younger in my life. Before I believe there are were no drugs then other than coping drugs, and now that there are drugs that will treat, Im better off now then I would have been 25 years ago.

And....thank God I have it, instead of one of my kids, loved ones or dear friends....

Happy New Year to all

Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 3:18 AM (GMT -7)   
Gary,

What a refreshing response!!!! You're a very positive person yourself I see. I'm also very glad for you that age is on your side (bigtime). How often have your episodes (attacks, flares etc) occurred thus far?

Frequency of others' is a curiosity of mine that I'll ask on a different thread. Id just like to see how I fit in, if I have them more often, less often , or on average - the same amount.


Prayers and thanks
kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 8:58 AM (GMT -7)   

Good morning Kiera, and thanks for your post.

Four years ago, I had a bout of double vision - left eye that lasted for two weeks. Eye specialist advised that I had some kind of nerve damage (?). Then there was absolutely nothing for almost two years - other than gall bladder surgery.

Then about two years later, my left eye went again, no double vision, but a strange feeling going on in my eye, and I noticed that this eye's view was dimmer than my right eye. This strange sensation that I had lasted for about 2 or 3 months or so.

about the same time, I was expriencing some dizziness, etc, kind of a head fog, and noted even before this that I would get very tired - the fatigue did not match the activity. I have only just realized that when I get really tired, my head does not work right, get that foggy feeling, etc, etc, and if I take a nap, it takes that yukky head feeling away (only took me two years to figure that one out!!!!!!)

Then I started to have problems with low blood sugars, as my insulin levels were 3X the norm. This took about 6-8 months to finally get that under control...had to modify my diet greatly eliminating most if not all sugars - which in the long run is not a bad thing!

Then I had inner ear problems going on - plugged, achy ears, and along with this dizziness etc. That lasted for awhile, and then went away.

NOTE: that during all of this, experiencing stiff and sore neck and shoulders....which went away for months, but then came back the end of last summer, and it is just now starting to go away again.

My lips last summer went numb for a couple of days. Then my right temple, right down the side of my face and into my ear really ached, and a bit of numbness along the side of my face - this lasted for about two weeks.

Then my hands started to go tingly and numb. My family doctor thought that it was strange that both hands were going numb, but shrugged his shoulders and wrote it off as a pinched nerve. I began to see a physical therapist, who was having me do things to leviate the pinched nerve - however this was not working.

Then I began to get that electric shock feeling from by my back down to my toes whenever I bent my head forward. I mentioned this to my doctor again, and again he just shrugged his shoulders - writing it off again as a pinched nerve. But when I mentioned this to the physical therapist, he put the brakes on - I was in to see a neurologist right away, followed by a MRI within a week, and the rest is history.

Right now:

Fatigue/tingly and numb fingers which intensity varies through out the day - however it seems not to be as intense as it was/electric shock down to my toes - again does not seem to be as intense - and posture really does play a part in this/legs-feet ache a bit from time to time - but usually when I get really tired/inner trembling - which usually occurs, but not everytime, right after I wake up from a sleep.

Lower back pains, headaches on and off over the last two years.

I have been on Copaxone for 16 days....so yes, I am a newby!

Have a great day, Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 1:29 PM (GMT -7)   
I've recently began having the double vision. I've noticed while reading if i dont close one eye words just jumble in the middle.

Ive had blind spots after some eye trouble in my left eye and the dullache , blurred vision that lasts the duration of an eipisode. This last one was 13 days I believe. Some are shorter, some are longer.

I've had the numb hands/tingling from the beginning. I also do what I call "wall walking" , where I get up to go to the bathroom at night and find that my legs (entire legs) are asleep and I grab the walls. Feeling does come back (thank God), after a few minutes. My mri's do not show anything as far as spinal reasons like slipped discs and all the things of that nature that would/should be causing this.

My lips twitch at times as do my eyelids. One day I was smiling at a child when my right cheek bounced up and down (imagine how i felt like a clown with built in power lol). I smiled again just to see and yes it did it again. I elicited (sp) this jumping drama x 4 and then it left.

My feet have pins and needles and different areas of my skin have burning sensations. I've had every test there is for neuropathy but those are negative.

My head has even went numb! (hand touching the skull, feels like your touching someone elses head)

Fatigue. Wow is it not something else? Your right that it doesn't match the activity. Matter of fact there doesn't have to be any activity, it can simply hit you and down you go. (for me anyway).

Spasticity has just begun with me and I've had painless kind then i've had some very painful ones that I call : controtions. Sometimes my own vocabulary makes more sense to me in distinguishing symptoms in my own body.

I cannot do what you do as far as bend the head forward and cause it to happen. It decided for me when it would happen. I might of had head tilted and not realized it though. Like I posted that stopped for now. If it returns I'll pay more attention to my posture.

Achey legs just begun. I had felt the heaviness of them before but only once. Now, ive felt the weakness and the ache. You wouldn't think weakness hurts, but its such a weak feeling that I felt that they were something I wish i could take off my body and lay beside me til it passed. Achey/tingly/weak, like they were barely hanging.
Thankfully this has only been once also.


They say no two Ms persons are the same and as we post we see this in reality. We have things in common and then we all have some things that other's do not.

Thanks for all your posts gary. G/L on the copaxone. I also have headaches or rather head achey feelings on one side of the head (not super bad but more, odd)..Unless they become migraines, and I hadn't had migraines since I was 18. Now they come with the rest of this at times.
 
I've also had the ear wierd/feelings but not much dizziness. Sound's like vertigo is with yours.

thanks

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/4/2008 1:35:56 PM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 1:47 PM (GMT -7)   

hi there Kiera - we keep crossing paths on a couple of threads, not that I mind at all, in fact, I think that this is great.

I do have a couple more questions for you - when were you dx, your age (I know, Im pushing it here).

I do notice for the shocking feeling, posture is part of the key. I noticed that when I slouch, and according to my wife, happens alot when I get tired - then the sensation is amplified - however when I am not tired, or when I stand nice and straight - the shocking experience is not as intense, and at times it is not there at all.....

Actually over the last couple of days, I have noticed that the tingling in my fingers and the numbness has gone away somewhat - Ive gotten so use to the sensation, that when at times it has all but gone, it feels as wierd as when I first got the tingles. Guess if it goes away, I will have to readjust to what it feels like not to have the tingles....now that is crazy - but then again, this whole MS stuff is crazy....

Thanks

Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 2:15 PM (GMT -7)   
I was dx'd initially 3yrs ago. Then they retracted it , or at least decided to investigate further. Again I was dx'd at a major hospital (one of the top 5 clinics in america), last month.

A rheumatologist now wants to retract it again...can we say Yo Yo?

I know I have it. At this point I'm really trying to find out what might also coexist with it.

I'm 46 and that's why the lady said my age was on my side, and why I said that yours was!

When I slouch I also notice that stuff and it doesn't do great things for our shoulders either , does it? :)

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/4/2008 2:19 PM (GMT -7)   

Yo Yo is right. Although my doctor's greatest accomplshment through all of this was to just shrug his shoulders, once the Neurologist became involved, it was just one, two three - mri - dx - copaxone - it was just that fast - it was the two years leading up to this that was the prob!

Gary

 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/4/2008 2:38 PM (GMT -7)   
I'm glad that your now on treatment. I really believe that the treatments will slow things down alot. At first I really doubted it.

I have a different friend who refuses all meds, including the modifying ones. She exercises to buns of steel/abs of steel/legs of steel/anything else made of steel?

When I ask her if the workouts trigger her, she replies with, "everything triggers ms, so no big deal"

I've asked if she's worried that not taking an injection will speed her progression, and no she isn't. Mind over matter is a big thing. For her it appears to work. She insists that her's is alot worse than most.

After looking at those who do comply with the injections and those who dont. I decided that I would comply.
Id rather inject and find out it helped nothing (i think it will though) than to later wished I had.

Two years was a long time but from what Ive seen, is about what most go through. Some alot longer even.

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Arlys S
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 1/12/2008 9:31 AM (GMT -7)   
Hi Gary:

Hope you won't mind my intrusion but was reading through these letters and found them most interesting.
Read where you had some inner ear problems with plugged, achy feelings and dizziness. I have been having the same thing for the past 4 months. Have been doctoring for this without to much success and am wondering if you found some relief and if so, what?
Also have the neck and shoulder problems -- have you found any thing to relieve these pains besides putting heat on them?
How long have you had MS? I was diagnosed 24 years ago. Have not used any treatments (because of severe allergies to medicines) and am still walking and maintaining a pretty normal (what ever that is!) life style.
Thanks for writing such an informative letter!

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/14/2008 8:59 AM (GMT -7)   

 

Hi Arlys, no such thing as intrusions on here. Glad to see your post.

My inner ear thing went on for a few months, but it has since gone away. The ears were constantly plugged, and aching, and with the deposit of fluid behind my ear drum, was casuing some dizziness.

Antihystimines like Reactine, and dcongestants seemed to work pretty good, but what really did work for ears - and it would now appeat that I was having some nerve problems in my ear - that if I took .5 mgs of Ativan, it really did help to settle things down.  I guess the Ativan went after the nerves in my ears, and desensatized them for a given period of time.

As far as the sore and stiff muscles in my neck and shoulders, that has been an on again off again, but mostly on again for the last two years.  The muscles on the side of my neck and on my shoulder would get as hard as a rock.

What I found to work very well for me - we to see a massage therapist - who did deep tissue work, and it did help to relieve the tighness in that area.  I also bought a home portable massager, and use to use this a few times a day - in between appoinmtents so that to keep the muscles plyable and relaxed. 

I was dx with MS just on December 11th, 2007 - yes just last month.  But I think that my first memorable MS attach happened in February 2004 when I experienced double vision out of one of my eyes for 2 - 3 weeks.

Ask away if you have any more questions.

Have a nice day, Gary


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/14/2008 10:38 AM (GMT -7)   
I have a buddy who has RSD and has warned me to get massage therapy early. I hurt so bad after someone massages me. It feels great when they do it but then i feel broke. She sad to expect to feel that way for about 3 days but then relief from all the neck/shoulder for about 3 weeks.

How do you get massage therapy? Which doctor would recommend that/ family?

I'll try to get ahold of her but have mainly only touched infrequent base with her as of late.


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Arlys S
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 1/14/2008 10:59 AM (GMT -7)   
Hi Gary:

Thank you so much for responding to my questions. Your symptoms with the ears was exactly what I am dealing with now. The fluid seems to be whats causing all the problems. My ENT doctor may try putting in tubes to see if that helps. The ENT tried predisone treatment for this and for 3 days I felt terrific and then
wham, ended up in the ER with a terrible reaction. So now thats out for any kind of help.
You seeing a massage therapist for the sore neck/shoulder pains sound like a good idea. I had been seeing a chiropractor for this for a while and may decide to go back for more treatments.
You were diagnosed just a little over a month ago. With me it took 10 years before they figured out what was going on. What a fun adventure that was! They have come a long ways since then and those diagnosed now have a much greater chance with all the newer treatments, etc.
Do you have any MS Support groups near you? I live in a small rural area with the closest larger city over 60 miles a way. This site and message board is a good way to keep in touch with those who are dealing with
the same issues.
I've noticed you are on coxapone. Did you start out with this right a way? How has this helped you? Since you were just diagnosed it takes a while for stuff to get into the system and before you can tell any difference. With MS there are so many things to deal with, it can feel like one is going around in circles (not much help for the vertigo!) and not making much head ways but eventually things taper off.
Thanks so much Gary and have a good day!

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/14/2008 12:14 PM (GMT -7)   

the tubes in the ears may do the trick, but if it is like all other symptoms that came and went, I am sure in your case it just might go away too.

I have been on copanxone for less than a month, and started right away after the dx.So far no reactions what so ever, and have got the injection thing down rather well. The neurologist advised that it would take about a month to kick in, where I feel any effects, so I am still a little ways from that. Now I now a month could mean 6 week, 7 week, etc - so I am not expecting to see an "all of a sudden difference" as soon as day 30 arrives.

But having said that, I do notice a somewhat difference in my hands, and the shock feeling that I get when I bend my head down does not seem to happen as often or as severe. Once I was in my office holding a cup of coffee, and when I looked down at my desk - well the shock was such, that it made me drop my cup..... I aso notice that after I have a shower, my hands do not have that heavy dead feeling as much as before afterwards.

There is a chaper of the MS Society of Edmonton - where I live - but have not made any attempts as of yet to join into a support group.  I am doing fine right now with all of the support that I get from here, family, friends, and other people. I have found now that with the dx, and the more tht I become familiar with MX, the more my family is becoming aware - and this has been a great benefit to both them and me. As well, Copaxone offers a support group too - called Shared Solutions, who have been absolutely fantastic - they even sent a nurse to the house to make sure that I am having no problems with the injections, and that I am doing it right.

Kiera.....here in Canada where I live, I have additional medical coverage thru my work, and they cover a good portion of the costs that are inherited when visiting a Physio Therapist. My own personal experience is to go to one that specializes in sports injuries, as they get right in there and manually get the job done.  Im not sure thee, but here, they are separate and apart from doctors, and your doctor should be able to make suggestions as to which one to go to that offers what it is you would be looking for...

Gary


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/14/2008 1:10 PM (GMT -7)   

While I do appreciate "inspirational stories" like this one, I also do look at them with some cautions:

We have to be careful that we don't fall into the trap of thinking that we somehow can control what MS is doing do us.

"..well, if I just ate right..."

"..well, if I just exercised more..."

"...well, if I just prayed more often, or prayed "right", or to the "right god(s)"

"...well if I were just a better person..."

"...well, if just..."...fill in the blank here with an "moral to an inspirational story"..

MS is by it's very nature (at least the most common form of MS) -- relapsing-remitting. Meaning many of us will go through periods when every symptom imaginable is thrown at us...and then other times when most of them go away, if not completely, then to a much more manageable level.  Like, I spent 3 months in the hospital, unable to walk, unable to see, unable to perform bodily functions, unable to move my left arm, unable to sit up unattended. Left the hospital in a wheelchair...and a year later was walking around with a cane, and sometimes with no assistance at all.

Did I do anything "right" (eat, exercise, pray, "do good", etc.)?  Well, other than a short term of physical therapy, until my $$ ran out...the answer would be no.  The MS just did what MS will do -- remitted.  I DID exercise...occasionally..and when my husband was around to help with it.  But otherwise, it just subsided on it's own.  Inspirational?  Well, perhaps to the extent that hearing stories like this will remind you that there is hope that MS will go into remission, and however awful things get for you, there is hope it'll go into remission for you..then yes, inspirational.  But just don't confuse that with wishful thinking..."well, if I just did these things, it'll go away."  It might. It might not. And it won't be because you did...or did not do...something.

But of course..as ALWAYS..this is just my opinion.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Arlys S
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 1/14/2008 3:29 PM (GMT -7)   
Hi Gary: You may be right about the ear problem going a way on its own. Today its been much better so am hoping this is a good sign that it just may be disappearing.
You haven't been on coxapone long enough yet to really notice any difference although it is a good sign that you've noticed some changes in your hands and especially with the heavy dead feeling. Had to laugh when you mentioned dropping the cup -- this happens to me more often than not and sometimes the hands have a mind of their own and no telling where the cup will end up! Just one of those things that we learn to live with.
It sounds like you have no need for the MS Support group right now but if and when you do, its nice to know they will be there for you. Its great that your family and friends are so supporting -- one doesn't always find this and as you know being MS is such an up and down disease, it takes some caring and understanding to fully comphrend whats going on. How nice too that you have Shared Solutions regarding the cox. treatment. This way you can share with others on how its working. I would be interested in hearing how these treatments are going for you too.
I am so glad to have found this site! You and Kiera have written such interesting things.

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/14/2008 3:56 PM (GMT -7)   
You are welcomed ....... and I will keep you posted on the copaxone treatment and how it goes
 
Keep the posts coming
Gary

Arlys S
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 1/14/2008 7:54 PM (GMT -7)   
Hi Uppity Cat:

I appreciated your imput and thanks for sharing your opinion.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 1/14/2008 10:44 PM (GMT -7)   
Hey Uppitycats,
 
It took me a while to get there with my thinking.  I wandered around on the MS spectrum thinking first that I was not going to develop the really bad MS.  Then I went to the opposite end of the spectrum and figured that because I had a bunch of those progressive markers (diagnosed after 40, short time between initial flares, multiple and varied symptoms) I was going to be slammed by this disease so I felt very sorry for myself. 
 
I am finally where I am just worrying about today.  I just do what I can and I don't worry about -
 
     "Did I exercise enough..........."
     "Did I see the right specialist.........."
     "Did I pray enough........"
     "Did I eat the right foods, take the right supplements...................."
 
It is both scary and a relief to know that I cannot control this.  I did not do anything to get this or to make it worse and there is really nothing I can do to guarantee that I will live without disability.  It is what it is.
 
Love and prayers,
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/15/2008 7:30 AM (GMT -7)   
I also agree that it is to be with caution that we regard inspirational as what they are: inspirtional.

Even with the modifying medication its rather in the grey area if an easing up of symptom is from that injection or from the remitting process.

I do however believe (not if i pray harder, or better, or to the right one) that prayer can change any course in your life. This is my belief in all things, not just MS.

I also believe in breakthroughs such as Vit D. Once you begin it and feel the difference associated as your level goes up (not confused with remitting process) it does give a person hope.

Nevertheless, Ms is a disease that lets one know they do not have control of it. Management of it? yes, control? no.

My realizing my lack of control over MS only makes me lean harder on who has the total control: GOD, not MS.


thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Arlys S
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 1/15/2008 7:01 PM (GMT -7)   
Hi Kiera:

I have enjoyed your letters and just had to let you know I agree with what you wrote above -- that God has control over the MS as in all other areas of my life.
Was interested in what you wrote about Vit D -- read before that this is suppose to be good for Msers.
How long have you been trying it? And what changes have you noticed, good or bad?
You are an inspiration to me and so is Gary! Am glad I found you via this site.

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/16/2008 7:50 AM (GMT -7)   

Hi!,

Well ive began to notice that some deeper pain that I think was bone is easing day by day. Also  ive noticed that even though  im still coming out< a word i use when its a slow improvement until totally free from flare, that fasiculations have decreased, overall sleep is better, gastrio is improved, and ive only just begun.

 

I did contact my dr. about my dosage and 1600iu's that i suggested to her, due to my level being 8.3 and severe is <8 was totally agreeable in her view.

Also I will do a 24hr urine to help lie to rest how my kidney function is.

The nurse from her office also said that they would call the lab and tell them to ensure  it says complements 3 and 4. (whew).

 

So, i still wonder from time to time. All the muscle jumping and my toes look like they have lost weight? i know how odd that sounds but i have to look at them  alot when going pee haha. They really do look odd and tendons in ankles are showing. I thought of atrophy but, Im not going to let myself worry it. They visually made a pt to look at them at the Clinic and checked my legs by making me lay "loose as a goose, they said" and took my legs by the ankles , moving them up and down. So im sure they'd of commented if it were a concern.

You and are inspiring yourself. Gary is thoughtful and very informative. Uppitycats adds alot when she reveals all she's been through. She is alot like the woman i mentioned. It wasnt that the woman had done anything special, but she knew b6 was vital. Her doctors had told her that and she wanted me to know that they would tell me also but maybe much later (and need it now). Point is, that when someone really opens up like she did, and uppitycats did it isnt like we wish to go through any  of that. Its the fact that they came through it and are here and now!

 

I agree about God. Theres not a disease on this planet, nor a planet period that is not controlled by him. What shall i say? that he wants me to suffer ms. No, but rather that when im tried, ill be found faithful. That he brings all the bad things to work for the good of those who love him.

 

Ok, i know this is a healthboard and not a belief site. but if i say what keeps me going. What makes me not want to give up (although you seem to still be here when you do that), its him!

 

Vit D is really worth looking into (get b12 checked too)!

 

thanks

kiera tongue


Every day brings us closer to what we reach for .........in all things.
 
Kiera

New Topic Post Reply Printable Version
59 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Saturday, December 16, 2017 11:37 PM (GMT -7)
There are a total of 2,906,369 posts in 318,948 threads.
View Active Threads


Who's Online
This forum has 158284 registered members. Please welcome our newest member, Mindy829.
243 Guest(s), 3 Registered Member(s) are currently online.  Details
MDNative, 1000Daisies, Girlie