It was so nice chatting with you. I have read your posts and you tell a familiar story. I am sorry for your recent diagnosis. I am also sorry you waited to join us. You could have used our support. You are here now and we are here to support you. Please ask lots of questions and post often to let us know how you are doing.
I was diagnosed after a short hospitalization for severe vertigo. After one wrong turn (I was misdiagnosed with cerebellar stroke) I was tested with evoked potentials, lumbar puncture and lots of blood work to rule out other stuff, I was diagnosed with MS. I was very lucky, I was diagnosed early and I started copoxane pretty quickly.
Love and prayers,
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.
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
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
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.
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