just been diagnosed

I'm new here and have never posted on a forum before.  I have to admit though that I have been perusing the forum off and on for awhile now.  I am not sure why it has taken me so long to post.  I have already learned a lot just from reading your posts.  I have been having symptoms (that I am aware of) since June '06, but was just finally diagnosed this week.  I thought I would feel relief over finally having a diagnosis, but I didn't.   I think I was in a little bit of shock and more than a little nervous about starting on one of the meds.  My neurologist wants me to start on Avonex, but I am not sure how I am going to do with giving myself an intramuscular injection.  I was a nurse before having my first child (I have 3 now, a 7, 4 and 2 1/2 year old) so I know I can give the shot, but to myself????  I am not so sure about that.  My husband is willing to step in and learn so we will just have to wait and see how it goes.  My symptoms have been weakness in my legs and arms (mainly my left side); numbness and tingling; and burning sensations, cold sensations; cramping pain and stiffness in my left arm/hand.  I have also had upper back and neck pain, back spasms, and leg cramps.  I am not sure if the spasms in my back and cramps that so often just appear out of nowhere are a part of the MS or not. 

Anyways, thanks for listening.  I feel a little funny telling you all my life story, but felt like it was time to reach out to those who understand what I am going through.  My husband does try to understand and that means a lot to me.  But there is a difference in trying to and actually understanding, so that is why I am here.  From everything I have read, everyone seems so nice and very helpful here.  I look forward to meeting you all. 

        Sorry to hear about your DX, it definatley does come as a shock but the positive is that now you know what you are dealing with and can work to find ways to manage it. I am using avonex, and I felt the same way. If i had to give the shot to someone else it would be a piece of cake but to myself...oh no. I have been on it for 3 1/2 months now and every week i try to do my shot but still haven't. My husband also was willing to step in and do them for me so be grateful to have that option. Everyone is different and with your nursing background it may be easy as can be for you..i hope it is. Good luck with that. Posting on this forum has helped me threw alot, there are great people here that will listen and support, and answer questions you may have. WELCOME and hope all goes well for you.

 I am glad you are here too. For me, it all started with vertigo. I felt like i was on a ship during a tidal wave sometimes and others i would be fine and then everything would start shifting and spinning out of control. After that, I noticed numbness in my hip and down my leg which would come and go ..that went on for about a month and then the leg finally went completley numb and stayed that way until i was DX in december. I also had horrible headaches..To the point of not getting out of bed for 2 days. So for me it was a compilation of things, vertigo, headaches, numbness/ tingling and neck spasms. I had to change primary drs 3 times before even getting a referal to a neurologist and I had a MRI on 11/30/07 and it came back with classic MS presentation. My neurologist called me the follwing day on 12/1 and wanted me to come in and i forced him to tell me over the phone and went into the hospital for a week for steroid treatment. It has been 4 months now. I take my meds for the headaches 2 in the am and 2 at night and use avonex once a week and haven't had any problems (knock on wood) There is hope. It shocking, its scary, and its manageable. Take the meds, exercise, take care of yourself, and keep a positive attitude(AS hard as that is sometimes) and you will pull threw.

Keep your head up

Deb,

MS most likely will not destroy your life.  It will make things rough.  You will have to learn to adjust to knew ways of doing things.  That adjustment can be completely crazy-making.  It can really be hard but once you have adjusted, life goes and you will find yourself living with grace and courage and you will be ok!!!  You will find that life can be very sweet again.  Good luck, you have a great attitude and you are going to do just fine.

Love and prayers,

Hi there, have not posted in awhile, but Im backkkkkkkk. So hello to all. Nursekatb.....the needle thing....I absolutely hear what you are saying. I am on Copanxone, which requires a shot a day....never ever did I think that I could do it, but after 141 shots later, well, it is absolutley second nature. Start to finish is about 30 seconds.....which surprises me to say the least.

I read dealin83's post and thought of myself. I did not start off with the dizzys, it started with vision problems, and then it still wasnt really the dizzys, it was more like a head fogf thing going on.  I have since learned, via trial and error, that it was mental exhaustion that I was fighting, and I started to realize that when my brain started to shut down, I got that head fog feeling, and when I layed down and napped, it went away, for the most part anyways.....

And then you mentions the neck spasm thing. That seems to be where I am effected the most. My neck gets so stiff and sore, and the muscles in the back of my neck get all knotted up, etc....in fact the muscles get so tight in my neck and shoulders sometimes that it throws my spine out.......

The MS seems to effect mostly my neck, shoulders, etc and my hands, especially if they are exposed to warm/hot water, and my hands go tingly and numb everytime I have a rather warm shower.  Other than my knees tinglying once in awhile, thats seems to be where it is at - for the moment anyways....

I know that everyone is different, for reasons that I now understand, but does it sound right that it would just effect my neck, shoulders and hands, and not my legs????

Thanks and have a wonderful day

Gary

Good morning D'awesome.  Great post.  I agree with you about the appointments with doctors....how for three years I was just sluffed off as having a anxiety issues, and more than once there were atemtps to put me on antidepressants. Then after things went a little more sideways with me, and seen the neurologist, and then the MS dx, I am now treated like a differnet person. My family dr. listens to me now, and has all the time in the world for me, things that I had been looking for before then dx of MS.

And friends and loved ones....yes, patience at times become strained with comments that are, I am sure innocently made, but made just the same.  I told a good friend about my dx, (and I know everyone deals with news differently) however I was really set back when he responded, "I have a neice who has MS, she is in a chair and is really screwed". Man oh man oh man.  I had another aquaintance suggest that I was getting pretty lazy, cause I sure do nap alot on the weekends.  I've tried to explain that the fatigue with MS is such, that it is not like regular fatigue, it is one that drains you out physically and mentally, mentally to the point where the old brain starts to shut down, get foogy in the head, loose cognitive skills, dizzy, etc.  The only resolve for me is a nap!  Doesnt matter how many time I try to explain it to others, they just don't get it.

Even close family ties at times looses scope of the situation - I do the best that I can, and go to the extreme outer limits before I tap out - and there are times when I tap out and say that I cannot do something right now - well I see the frustation levels elevate with the people around me, and then I feel guilty, and then continue on feeling absolutely like death warmed over me, just to keep harmony with in the ranks. Anyhow that is my bit of ranting.

Thanks and have a nice day

Gary

The week though for me is still full time work between two part time jobs but thankfully both are fairly understanding & flexible  (church secretary at one, and paralegal/commercial realtor ass't at the other) but I'd like to figure out how to get past the late afternoon slumps around 2-4pm... after that I seem to get a second wind and am ok til bed that night but from 2-4pm I could crash fast!

Anyone got suggestions? (Is there fruit, protein, something I could munch that might help? I don't do coffee or caffeine much).

Good morning TGR....wow, I really don't know what is holding them back, lesions, visions problems, spinal taps, cognitive problems, I am not sure what more they want.....sorry to hear this, and I do hope that someone takes the bull by the horns for you, and makes a decision.  I am pretty sure that many people who read your post are likely thinking the same thing.

D'awesome.....if by some means you can find a way to take "5" in the afternoon during the "OMG I am drained" period of the day, this will work wonders for you.  I am in a position that I can just close my office door for 15 minute or so, and take the "5" that I really need. Otherwise, everything just starts to fall a part for me.  But then there are days when I do not need to, it's so wierd, but there are some days I can just keep on going, and do not need the nap, other days I need one right from the time I get out of bed......

On a suggestion for the "how to help control fatigue", wel first off - nap if you can. (what is it in our culture that makes us feel so guilty about having a "nap" in the afternoon. How many times have you slept in and the phone rings, and if the person "where you still sleeping" we generally lie and say "oh no".... There lies the problems with us Msers....

What I find that helps is to have something that contains a complex carb during the afternoon (fruit, vegatable sticks, whole grains, etc).  Remember that the brain's main source of fuel is sugar.  Ask someone who suffers from low blood sugars how their brain feels when sugars beging to drop too low.  Seeing the brain is having to work overtime to send and recieve messages, it's going to use alot more fuel than normal, only makes sense.  So I ensure that I have something in the morning to get a bit stocked up for the afternoon, and then refuel again in the afternoon to keep the tank full. I find that it might not off set the fatigue completely, but it does help, and it really does reduce that brain dead feeling that I get.

Thanks

Gary

Hi good morning D'awesome and mojo- great suggestions from mojo as well.  Stretching and proper posture really does play a major factor into all oftis as well.

If you are findidng that if some of the stretches, etc you try bring on symptoms, try working with a physio therapist - who might be able to come up with a stretching plan for you - one that will assist you in minimizing some of the symptoms, as well, learning to stretch out certain muscles will assist you as well with spasticity issues, that I am sure you are experiencing, especially in the neck and shoulder regions, the area that give the most problems.

I have learned from a nutritionist that it is what you eat in the morning and at lunch time that will determine your energy level for the afternoon - it does not have to be alot - but just something to keep the "battary chargeed up". Aghain stay way from items tht have high simple sugars, that will spike you, and then drop you just as fast - it is the quick dropping of the sugar levels that can make your head spin, and feel like you have been hit by a truck!!!!! You experience this enough with MS without any additional help with the situation.

Anyhow have a great day

Gary

Remember too, that the brain's main source of food is sugar. And when it is working as hard as it is at times, to send and receive messages - because the electrical cord is shorting out, the brain has got to be using a lot more food then it normally would.  I did have low sugar problems at one time, and really dont care who tells me otherwise, I do beleive that the brain was demanding more food to operate. So with that, I maintain a level (6 times a day) to ensure that I do not run out of gas - and by this I use complex carbs, so that it is a slow drip instead of a huge hit of sugar all at once.  Again this does help with the engergy levels during the afternoon times - when the fatigue seems to hit most people the hardest.

Have a great day,

Gary