Post Edited (Kiera) : 1/2/2008 4:49:16 AM (GMT-7)
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,
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
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.
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
Post Edited (Kiera) : 1/4/2008 1:35:56 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....
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!
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
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...
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.
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)!