Can't help myself here girl. Your name is making me sing the Name Game Song inside.
Bama, Bama, bo-ama
Banana-fana fo-fama
Mee-Mi-mo-ama
Bama!
Hope that's out of my system now and I can give you a proper welcome. We're glad to have you here even while wishing the circumstances were more joyful.
You've got lots of companions falling into step beside you here. I'm joining in without any specific stories. I'll just add that this first year with the MS diagnosis resembles any good roller coaster ride. The biggest climbs and falls are served up right out of the gate.
Stop by frequently - or not. Some people can't get enough of learning and asking questions. Others feel overwhelmed with even small doses of MS forum lurking. We're with you either way and glad you stopped in. It takes a boat load of guts to self-recognize the feelings you've described - - and even more to share them with strangers. Thank you.
Wishing you continued courage in all your challenges.
Mary
I totally get where you are coming from. I was in the middle of a terrible flare and my dad told me I needed to increase my exercise. I could barely walk and was holding on to the walls. Exercise? Right! I agree that people just don't know what to say.
@ku111 I also understand where Jordan is coming from. You try to stay upbeat and keep a good attitude, but it wears you down. I know you said you were going to try acupuncture. Did it help? I find that helps me more than anything. It helps my mood as well as other symptoms. If I could afford it, I would go a couple of times a week instead of just once per week. Also, would he be interested in talking to people on this forum? It's been a lifesaver for me because I know that someone truly understands.
Wishing you all the best!!
Chris
I am so sorry you are having to deal with all of this. I really think people try to understand but it's so complicated that I feel I barely understand sometimes. My son had an episode when he was 11 and is now 13. He has highly suspected MS. We are getting closer to solid diagnosis. I can't wait so we can get him some relief from all the zaps, fatigue, weakness, balance, eye sight. This is going to take some time to soak in for everyone, including yourself. This is a great Forum with so many helpful people, answers and suggestions. These people have become my strength and inspiration. I hope you stay around and let everyone give you strength.
I do have a question. You say you had depression, memory loss and anger. We are having this issue right now here. I have told no one except our dr. Embarrassed I guess and lost of how to help him. Somedays he is perfectly fine - like the child I know. Others, he is withdrawn, angry and forgets what he says to us. I know his memory is a big problem to him. I know this might sound strange but it's just not him. Then, as fast as it comes on, it's gone again and all back to normal. Did you feel like this?
Ok now in reading all of this, I have developed blurring vision, well like the star bursts and a few years back got glasses and now have to again. I get spasmy pains here and there, feels like lightning bolts just occasionally. I thought I was bipolar, (that does run in the family as does schizophrenia and depression, lol) and on go through waves of fidgetyness with my legs and back. I can't sit still through a movie anymore or while traveling. I guess this is what you mean by sensory, and we just ignore it. I guess I should be logging these to see where they lead, but I also don't want to psych myself into an illness. Know what I mean?
Welcome - I too know where you are coming from when you tell people about your dx. They truly do not know what to say, Those closest are at a total loss. Some people will tell you they know so and so who has it too, i even had someone tell me their uncle had it and died from it and what a shame thats gonna happen to you! Yes they actually said that!!!
Like Kyle says it is a double edged sword - bad you have it but good to know cause now you can treat sx's and try and prevent relapses.
Meet with your specialist and one thing I suggest if you are having memory issues is write down questions to take with you. My memory isn't the best all the time and this definitely helped me,
Remember while sometimes you feel alone in this you do have family and friends to support you and you have this online family to give you support as well. Over the past almost year of the dx process and now treatment process this site has helped tremendously!
Hang in there - and we are here
Tracy
Hi bama - welcome to our little group.
The bad news is you have MS. The good news is you have MS :-) As Kurt said, now that you know what your dealing with you can start to fight it!
I can relate to much of your tale, as I'm surer others can as well. People hear MS and they don't know what to say. They don't really know what it is. I know that when I was diagnosed I didn't really know what it was, and I have it :-) They are scared because the one thing they probably do know is that MS is serious stuff. What they are really doing when they say things like take vitamins is trying to convince themselves that someone they love doesn't really have an incurable disease. They mostly mean well :-)
You're leg jerking story rang familiar with me. I my left hip replaced 3 years ago. About 6 months after the surgery I started having trouble controlling my left leg. When I picked my foot up it would sort of flail around and I wasn't real sure where my foot would land. I thought it was because the muscles had not yet healed from the surgery. I went back to the hip doc and he checked me out and couldn't find any thing wrong. They symptoms went away, coincidentally as I got stronger post surgery. Fast forward 3 years and it turns out my flailing foot had nothing to do with my hip surgery :-)
Ask us lots of questions and try and be patient with your friends and loved ones...
Kyle
Welcome, you've come to the right place away from family and friends.
It is odd but you now have more in common with a funny, caring, wise bunch of strangers than you do with those around you. You see no one understands cognitive issues, numbness and tingling quite like your new family here.
Take some time to read up on the health pages here, talk to your local MS group and then take a few deep breaths. Try not to let your mind go straight to worse case.
You're in good hands little grasshopper.
Blessings
Alex
I got a bag of lemons and a lemon juicer from my brother, for when my day su_cks I can make lemonade lol then a pair of doona booties to keep my feet warm, then a frightening slicer thing, because he didn't like me having a knife in my hand, so now i can cut off all my fingers instead of just the one lol lots are just bizzar but he's an Aspie and its his way of saying he cares, so alls good.
A word from the wise, family may often say something thats dumb, stupid and annoying without even trying, just smile and dont let them catch you rolling your eyes lol
Here's a good place for understanding, we know your 'weird', we get it, we feel it and are very happy to help, explain or just listen to a vent or two, we know what its like. ;-)
Cheers...........JJ
Lol. My mom bought me a juicer.
I know just what your going through. It' such a lonely feeling when you're looking back at a blank stare after you've told someone you have MS. To most people, it's just some obscure, scary sounding disease that they've heard of, but haven't the slightest idea what it means.
"Oh, really."
Try to remember that you're not alone. This is a wonderful place to come to for support, when you need to talk to someone you can relate to.
I meant "slow".
drugs will slow the disease and reduce your symptoms.
Many typos in my post.
Please forgive my ignorance. What is slotting
I really don't know....lol as long as I can remember I have eye site issues. I would get a halo in my vision. Then my eye site would move to a blurred double vision. I blamed on too much screen time or reading. The last two years I haven't felt good. A lot of knee surgeries. After any surgery I would get this new jerking motion. My legs jerked around. And arms. Then it would go away. After my knee replacement. The jerking intensified. Waking me up. Then the numbness came. Again going way way back to my 20s. Or farther....my feet and hands felt like they were asleep. Sometimes lasting a few days to a week. Again to disapear for months...long streches of nothing weird. So I would forget to mention to my doctors.
And deressuon fatigue. I like to sleep a lot. My depression would come and go. With a anger issue. I call it filing my fangs. Lol.
Along with I get sick from anything. Sick sick sick.
However....because of serious pain in knees. I just had a total knee replacement last May....I washing heavy duty pain killers. Oxycontin.
I blamed everything on the oxy. So did my husband. I came off the oxy. The symptoms were still there after 30 rays of no oxy. The forgetfulness.( thought I fried my brain). The anger and depression. Tue eye site. Etc.
Also my thigh muscle shrank again.
So my husband went to my Nero appointment. And started to ask why I did this...and that.....the vision. Jerking. Forgetting. Can't swallow. Balance problems.
And testing began.
Welcome to the site.
having is diagnosis is a good thing in MS. now you can start taking drugs that will help slot your symptoms and make you feel better.
May I ask at what age you started developing your first symptoms?
thanks.
She tells me all about her examine....there is no similarities.
Mom. I thought ms effects your nerves and muscles. You don't have that.
Me. Yes I do mom. Remember how I jerked and jumped thru knee surgery??.
Mom. I thought you said that was from all the pain medicine??
Me...I thought so too.
Me.. here's one you can relate to mom. Your always telling me I get stuck on a subject. Or how I forget everything..
Mom. You've been doing that for years.
Me. My point mom.
Mom. Oh.
Me. I've lost too much weight. And my muscles shrank on my right knee.
Mom. I thought they fixed that with your replacement. I thought that was from your fall.
Me. Ok mom. Your right. Everyone has a two to three inch gap where they lost muscles in their thighs.(I'm getting agrevated).
Me. I've had this for awhile mom. Just don't say anything. All lot of this comes and goes. Has. For a very long time.
Mom. Like what??
Me. The eye site. The balance. The weird tingling in my feet. Hands. Arms.....the headaches at the base of my head/neck area. The memory loss..the forgetfulness. Can't explain it.
Mom. Oh. What tests did they do??
Me. When j. My husband complained to my Nero about my pain meds making me forget. Or the reason for numbness..the eye sight. Husband started asking questions about certain things my body does. Well....the Nero ordered tests. I had a cat scan. And a weird test that had all kinds of crazy things on my head. A MRI of my brain neck and spine. And let's not forget the spinal tap. I didn't like that too much.
Mom. Very quiiet....oh. so what do you do now???
Me. I'm seeing a specialist for ms on June13. We wait. We manage. We hope it doesn't progress.
Mom. How do you feel??
And on and on.
Keep in mind I'm new to this. Just found out myself. I have rrms?? I'm learning. I'm scared. Im soooo angry. What else are they gonna test me for?? What next??