just been diagnosed

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nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/6/2008 9:20 PM (GMT -6)   
Hi everyone,
 
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. 

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/7/2008 9:31 AM (GMT -6)   
Welcome to the board, Nurse! I totally understand your mixed feelings... on one hand it's a relief to know why all the "weird symptoms" are persisting and/or progressing and on the other hand, it's a bit of a shock to realize, "oh wow, MS" It's daunting. I've been on the dx merry-go-round for nearly 10 years... only recently have the symptoms become drastic enough to get my GP to send me to the Neuro who's tried to talk himself out of his dx several times. Still he finally said it and now it's settled in to me so that at first I was relieved to know I have a dx... it's an answer. Nothing feels worse to me than that limbo no answer but all these nuisance symptoms going in my body at the same time. But now it's the reality setting in and that's where a positive attitude does help.
 
This board has been very helpful with a lot of experience and great input from wonderful folks. They listen, help, and they ease your fears so you can think straighter sometimes... enjoy, explore and keep reaching out. Knowledge is power and that's what I believe will help me in managing this disease. As a nurse, I'm sure you'd agree... you're just in a different position now being the patient.
 
As for the needles, I think with practice you might get okay with it... I had to do a series of shots for a couple months once for an IVF program back in '86 and it involved those needles to myself thing... didn't think I could do it but after awhile it was easy. Good luck!

Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


dealin83
Regular Member


Date Joined Feb 2008
Total Posts : 36
   Posted 4/7/2008 10:29 AM (GMT -6)   
:-)  Welcome to the board nurse-
        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.
Lindsay
diagnosed 12-1-07
avonex weekly
 


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/7/2008 10:31 AM (GMT -6)   
Thanks for your message! You're right...the limbo stuff is hard to deal with. My neuro and the MS specialist I saw a couple of times kept saying we are 99% sure you have MS, but didn't feel like they could actually give me the diagnosis. Crazy! One minute they are telling you that they have tested you for everything else and it couldn't be anything else other than MS, but then the next they just want to wait until you have another attack. My MRI's have showed several hyperintense lesions, nothing different after contrast. My last MRI (in Feb) didn't show really any change from the one done almost a year ago. The report said it was indicative of demyelination. The doctors said it was definitely abnormal for my age, but it wasn't a "classic presentation". I started with an episode of weakness in my left leg again about a week ago, and that was what prompted the diagnosis.

I definitely wish I had posted before now...I could have really used the support while I was in that limbo and dealing with all of those "weird symptoms". But I am glad I am here now! Thanks again.

P.S. How did your symptoms start and what happened for them to finally diagnosis you (if you don't mind me asking)?

dealin83
Regular Member


Date Joined Feb 2008
Total Posts : 36
   Posted 4/7/2008 10:45 AM (GMT -6)   
Hey nurse,
 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
 
Lindsay
diagnosed 12-1-07
avonex weekly
propranolol 40 mg daily for headache control


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/7/2008 1:58 PM (GMT -6)   
Hey Nurse!!

Welcome to the board!! I must apologize. I have been very busy with family lately and somehow missed u'r post, but wanted to let u know i'm so glad u'r here and hope u'll feel comfortable posting and asking any questions u may have. Everyone is right...this is a great site with such wonderful people! I think u'll find that everyone will do all they can to help u find answers or just to listen if u want to vent.

I'm so sorry for u'r dx, but truely happy u have an answer. I have been in limbo for about 2 years now and have often felt i'd find relief in just the knowing...but somehow i think that dx would make it a hollow victory. There is just no good in getting that dx, but still there is that knowledge and the end to all those questions.

Welcome again to the board and please do make u'rself at home. We're glad u posted!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/7/2008 3:11 PM (GMT -6)   
Thanks everyone for the welcome! I'm sorry Rhonda that you are still waiting for answers and please don't worry about missing me...family comes first. I have three little ones and a new puppy (always had cats before so this is definitely new experience). They can really keep you hopping. One doctor asked me if I was tired all the time, and I certainly vouch for that, but I just thought it was from having 3 kids. LOL

Lindsay, thanks for your input. It somehow helps to know everyones story so to speak. It's good to hear that you are doing well on the Avonex. I have heard from the company's representative a couple of times already. They are just working everything out with the insurance first. At least the med won't cost us an arm and leg from what we understand.

Well, I better go for nowl...three little ones who need to eat!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3529
   Posted 4/7/2008 7:49 PM (GMT -6)   

Hey Nurse,

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,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


calicorosie
Regular Member


Date Joined Aug 2007
Total Posts : 48
   Posted 4/8/2008 2:17 AM (GMT -6)   
Hi Nurse

Nice to meet you :) I am also recently diagnosed and feeling quite overwhelmed. My symptoms are so similar to yours. My kids are 17, 15 and 10. The 10 yr old takes such good care of me :) The other two of course are teenagers.... enough said LOL Actually all three are wonderful but the little guy is just that little bit more willing to look out for me. DH is finding the news quite a bit more shocking than I think I am but I have been expecting this diagnosis for quite some time now.

I look forward to chatting more with you here and with everyone else.

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/8/2008 6:17 AM (GMT -6)   
Hey Nurse,
I've been dealing with the symptoms for about 10 yrs like I mentioned but for me it started with one single numb spot over my right knee, then numbness in my feet, pins and needles in feet and hands off and on, never bad enough to be debilitating just annoying, extreme stiffness after a movie, legs not working after sitting for any time, imbalance, staggering (but everyone thought I was just "hurrying" too much or must have an inner ear infection though no other symptoms), heavy fatigue, creepy crawlies up my legs, eye tics and chronic massive horrible headaches that I was living on advil with... the crowning moment though that made my (third also) GP send me to the Neurologist, was total loss of fine motor control of my right hand after spray painting some furniture one morning. I just happen to have an appt with her that afternoon and the tremor and out of control was still happening as I was trying to make a prescription note for my thyroid... then she started asking questions like are you up to pee more at night? Are you stiffer than usual? Are you having balance issues? etc... and she sent me. All the symptoms in themselves could be written off as "getting old" and often were... or thyroid or any other number of issues (IBS, ear infection, stress, caregiver to my dying mom etc... )

First visit, he ran me thru his whole exam and dx'd MS. But the MRI's said no lesions. The Pituitary said inconclusive on a possible tumor and he put on Topamax & Maxalt for the mirgraines (blessed relief). 6months later: more numb spots, sharp pains in the neck and behind the right eye periodically, legs still not working very well and of course more fatigue.. so he ordered the Nerve Conduction Test. Results: nerves are smaller than should be for my age and size. He associate thought I was diabetic, I'm not. Recheck in 3 months. Vision issues: blurriness, color diminished and depth perception loss in right eye... Optic Neuritis. He dx'd MS again. We redid the MRI's completely. Right now I'm hearing nothing abnormal. I'm guessing no lesions.

We have just begun. I see him May 23 and will see where he wants to go from here... don't know what he'll do now. So that's my story but new symptoms to add recently for him will be: shortness of breath issues like I can't get a deep breath, more new numb spots (there are many now thru my feet, legs hands, upper right quad of my face)... I just keep a list now. It's hard to know anymore what is or isn't important or matters or doesn't. I used to just poo-poo all the other stuff off and now accumulated they all matter! Go figure.

Personally, I just want to manage it. I've got a sis with Hep C from a bad blood transfusion in '86 when she had her daughter and she originally thought it was a death sentence but we researched managing it with diet and 15 yrs later her numbers astound her doctors! I want to be able to make MS just another part of my life not my destroyer, so I'm reading and listening to everyone here and taking it all in so I can partner up with it and manage it for a long and fruitful life. That's my hope.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3529
   Posted 4/8/2008 7:36 AM (GMT -6)   

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,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/8/2008 8:58 AM (GMT -6)   
Gretchen, it was great chatting with everyone last night. I sure didn't have the slightest clue what I was doing at first but I think I got the hang of it.:) My husband even taught me a few little smiley faces to add in! Thanks to you and everyone for your stories. I know it must get tiring for you to have to go thru it with everyone who is new. D'Awesome (Deb?), it sounds like you have also had a mix of small things with some bigger ones. I can vouch for those smaller things just adding up and becoming more an issue as they do. If you are like me you are probably hoping against hope that your mri and test will come back conclusive for ms if they are going to dx you with it. I am confident that we are all going to do just fine, some days might be better than others though. Calicorosie, it's nice to hear that your children are sensitive to your condition, especially your youngest. That's really sweet. Actually my youngest (2 1/2 though) is the most nurturing, and it is really cute to see her caring for any of us who "need" her.

I will be praying for you all, Kathy

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 4/8/2008 11:58 AM (GMT -6)   

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


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/8/2008 8:52 PM (GMT -6)   
Gretchen, thank you so much for the response... when I think of how I used to be though and how I am now, it feels very much like a "destroyer" and it's easy to fall into a pity party. I have guarded myself against that and had to bar any doctor from the antidepressants for all these years since most of them just thought I needed the happy pill combo to feel better... finally now, after 3 GP's (my neuro has been astounded) my current GP understands and fully listens thankfully and symptoms are recognized instead of masked.
 
So yep, I know it won't destroy me (what's that old saying from Steel Magnolias?  "That which doesn't kill you makes you stronger!" :) ) but it sure did change my life... the stranger thing has been those around me. The "get well" wishes... it's hard to explain it's not a "get well" situation. How do you tell well meaning friends that when they say they're praying you well? I have faith, very strong faith but I've always understood what is will be and I hardly expect miracles so it's management time now. But "get well" just gets me, I've had to be gracious and kind while I want to gently explain, there's no "getting well" going on... it's called coping. (Sorry vented a little here).
 
And yep, Nurse, I'm a deb too... my initials are daw and I got nicknamed D'awsome elsewhere so I used that here... :)  I appreciate the sharing and comparing notes alot here cos I can relate. Tips, feelings, experiences, every little bit has helped me a lot already to understand what I thought I knew and now realize I knew very little.
 
Gary, I think MS is very individual... check the MS foundation site... I've read it can go lots of different ways, some folks go thru primarily vision issues (I have a friend who's been basically blinded by it), it can go with the neck/face/arms Upper areas.... or it can go legs/mobility... or it can go with all the involuntary muscles... or any combo thereof.. MS decides it's own path. I don't think the drs have really good predictors down on it yet.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 4/9/2008 8:28 AM (GMT -6)   

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


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 4/9/2008 7:12 PM (GMT -6)   
Gary, it's good to hear from you. Sounds like you are having some of the same issues I am having with my neck and back. It seems to pop up everytime I have a flare. I can relate to your accounts of family and friends dealing with your ms too. I know they mean well, but it's hard when sometimes they just forget or just don't fully understand the fatigue. My fatigue level isn't always the same day to day either, so that I guess can really throw my family off in knowing what to expect. Of course I can't really count on anything with this ms...it seems to change all the time. I understand your guilt too...it's so hard to say no to those you love when you know they need you and count on you. I'll pray that frustation levels will diminish and you will be able to take some "me" time without any guilt!

Anyways, gotta go take care of my mom....Kathy

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/10/2008 6:43 AM (GMT -6)   
Gary your post struck home really hard... I have not taken to the nap except sometimes on the weekends, I'll warn my husband that I'm waning and he may come home and find me napping but wake me by such and such a time if I'm still sleeping (or I won't sleep that night) and he's really good about that part, really.. he's a take it easy procrastinator so my slowing down makes him happy cos he can keep being slower too but then it frustrates me and I'll push myself thru things to get things done... so there's not a really good balance yet... it's like he's happy I can nap and slow down but he's not willing to help take up the slack I create by being so tired. We're working on that part these days.
 
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).
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


tgr4lfe
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/10/2008 10:39 AM (GMT -6)   
Hello everyone, I am new on here as well, but already feel encouraged. I am in the "limbo" stage and have been since 2003. I have suffered chronic headaches which started the ball rolling. after 3 MRIs 2 lumbar puncutres and 3 Neuros they still aren't sure. I go for and OCT exam next week and an EPT exam the week after. The only definitve answer is that there are over 40 liasions. I have started seeing light flares after the shower and having trouble thinking, concentrating, and articulating my words. I have suffered some temporary blindness in my right eye lasting for 8 hours. But still nothing definitive on a diagnosis. I feel completely frustrated! I just want to know "yes" or "no" so that I can confornt it and move forward. Thanks for the encouraging words and the openess of eveyone sharing your stories it gives me hope that eventually they will decide.

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 4/11/2008 8:33 AM (GMT -6)   

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


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/11/2008 11:43 PM (GMT -6)   
Hey Gary, thanks for the ideas, I'll try the complex carbs idea... that might help. Being on the Topamax diminishes appetite and I admit quite often I work thru lunch only to discover it's long past and I'm still not really hungry... alot of my normal sensors don't seem completely functional so sometimes I just have to time it by the clock.
 
As for a nap, yeah, I do feel guilty about that and yeah it is a social culture thing I'm sure... not to mention that I'm a Type A personality driven to succeed against all odds etc...but worst, I currently share one office directly with my boss until we get a commercial office where I'll have my own and then possibly the luxury of that 5-15 min... sometimes I think that's all it would take! I know at home on the weekends, it works wonders... but the other office, I could possibly get that with my boss there (my pastors are very attentive to my health, I'm a church administrative ass't) so I may just opt for that periodically.
 
Greatly appreciated... between the Thyroid and this... it's a double whammy.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


mojo
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 4/12/2008 1:00 AM (GMT -6)   
hey d'awsome...
first of all, thanks for yr posts on both this and other topics: seem to have some similar experiences. including learning to "manage" my doctors and avoid the pitfalls of being dismissed with depression, anxiety, or feminine hysteria. we both may have noticed that alot of thought is required in addressing this...for tomorrow, am carefully trying to put together a new topic post/discussion about participating in our own treatment.
second, read yr slump/nap posts and gary's good suggestions: since you can't necessarily take 5-15min, there are several quick basic stretches that you can use (appropriate in yr current office situation) to relax & refocus. postures are seated (i.e. spinal twists & elongation, neck and shoulder rolls, etc.). if yr familiar w/these great...if not and need help, plse let me know and i'll try and suggest instruction resources/diagrams.

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/13/2008 7:26 PM (GMT -6)   
Mojo, thanks! I would be interested in the stretch info and resources you mentioned... I do stretch to stay limber, get up to move around every so often (so that I can move by the days end) and such but don't specifically know or understand what's the best for what I need for the energy issues... some stretches create pain twinges that feel like electric shocks... or disturb my vision and / or balance as though the blood is rushing up too fast. So if I knew the right moves, it'd be great to practice.
 
So please do share... I'm like a sponge right now soaking up all I can! Thanks!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 4/14/2008 9:11 AM (GMT -6)   

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


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 4/15/2008 8:18 AM (GMT -6)   
Hi Gary, thanks for the tips, am workingon avoiding the high sugar boosts... have realized I have a serious sweet tooth and it does produce those crashes before I realize they're coming... carb craving had been a big problem prior to getting on the Topamax for the migraines... since then it's been easier but every so often it's a little crazy.
 
What is the normal digestive cycle to watch for? I mean we eat on a social schedule of morning noon and night for 3 meals but sometimes it's like 10 am and 2 or 3pm  when I'm really hungry! What kind of sense does that make? If I'm eating protein (chicken/ham/beef/fish/cheese at lunch why isn't it lasting past 2 or 3pm? I'm thinking a nutritionist would be really helpful, maybe I can find out if my insurance would pay for that or if my docs would find that useful. Right now the insurance has already rejected one test and I'm waiting for the sledge hammer to fall on others... they're frustrating my drs.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 4/15/2008 9:12 AM (GMT -6)   
Good morning D'awesome.....I have the same thing as well, where I will be hungry late at night.  Your metabolism is likely working well - by that it is using the food and nutrients you are consuming quickly.  I find that since I have changed to a lower fat diet, eating more grains and fruits and vegatable, my metabolism has speeded right up..If I eat breaky, then lunch, and then dinner, I am looking for something to eat around 11 PM.  It does not seem to matter how much I eat for dinner, Im still looking late at night.(the could be habit too). So now instead of having three meals a day, and then snack badly, I have about 6 small meals a day, just enough to take the growlies away, and then at night time I have a bowl of whole grain cereal etc - which seems to do the trick.
 
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
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