Hi Lisa,
I'm glad you had a nice meal together as a group. There is definitely strength in numbers and some kind of positive energy that comes from a group of like-minded people who enjoy each other's company.
I'm not diagnosed and rarely appear to have much problem besides tremors in my hands and voice, but here's what's behind the scenes:
VISUAL - Past partial blindness, frequent flashes of light and mild double vision all the time.
MOTOR - Tired sounding weak voice, slow deliberate movements.
SENSORY - Facial pain (especially when I'm hot), internal "buzzing" sensations, phantom cold spots.
COORDINATION - Intention tremor in hands, voice, and head movement.
BOWEL, BLADDER, SEX - Past incontenance, ED
COGNITIVE - I forget. No seriously, I have had severe short-term memory problems and word-finding is always difficult. I avoid the phone because I can't process the conversation fast enough, depression.
OTHER - Fatigue, heat sensitivity, acid reflux, sleep problems.
It all sounds worse than it is. I think there's a cycle to it all and I'm doing well right now.
Thanks,
KJ
Well my worst symptoms are fatique and walking. Boy I hate those worst of all. My memory is good, but the fatique is the worst. I have a small window of time to work in that is the morning, if I do not get it done by 77:00 a.m. it is a wrap! I do not take Progivil any longer I may staart taking it again to see if it will help but it will wear off after a while so I have to use it wisely. I am loosing the strength in my legs after 11:00 but such is life. I have learned to deal with it. I will be all right, I have mastered the art of falling I am good at it now so I will not hurt myself
at least not the major bones
. My husband said I am going to give him a heart attack I told him unless I holler not to worry, he cannot be with me during the day when I fall and I survive.
I have learned to make the best of this monster, it aint gonna beat me, it may bruise me, but it won't beat me!
sherry/smomdukes
ps I think I have broken my right shoulder this time, but like my left one it will heal!
My daughter 39 Had symptoms like a stroke and went to er. No stroke,tia or h.migraine. She then started having tremors starting in her feet, then legs. Also same started in hands, arms. Blurred vision then started. Sent to Loma Linda hosp ICU. mri,cat scan, eeg with video etc. After three days she was released with no dx. Loma Linda said no lxs, not eplipsey,stoke and the eeg did not match her body movements. Gave her Bocldren for tremors. Helps some but she had another cluster headacke,small siezure,numbness of face and speech problems. Tremors have increased again. Went to UCSD, La Jolla who did neuro exam and had the summary from loma Linda but no actual disks of mri or eeg. They said stress. Any ideas as her tremors are increasing even with GABA drugs. Thanks Norm
My daughter 39 Had symptoms like a stroke and went to er. No stroke,tia or h.migraine. She then started having tremors starting in her feet, then legs. Also same started in hands, arms. Blurred vision then started. Sent to Loma Linda hosp ICU. mri,cat scan, eeg with video etc. After three days she was released with no dx. Loma Linda said no lxs, not eplipsey,stoke and the eeg did not match her body movements. Gave her Bocldren for tremors. Helps some but she had another cluster headacke,small siezure,numbness of face and speech problems. Tremors have increased again. Went to UCSD, La Jolla who did neuro exam and had the summary from loma Linda but no actual disks of mri or eeg. They said stress. Any ideas as her tremors are increasing even with GABA drugs. Thanks Norm
I'm sitting here with tears rolling down my face. I go in for an MRI Friday, their looking for lesions. With the exception of eye problems (thank God), I have all the symptoms listed. When I read that the "MS hug" had an actual name I lost it and cried for 10 minutes. I'm scared.
Hi Sher,
Welcome. Take a very deep breath...and let it out slowly. It can be terrifying to face the possibility of a disease such as MS. Fear of the unknown is a powerful feeling. The MRI on Friday is a good next step in looking for answers for your symptoms. Once you know the cause, then you and your neurologist can work together to try to make them better.
I know that it may not make you feel better right now to hear it, but things WILL be okay.
After your MRI scans are done on Friday, ask for a copy of the images. My MRI center will copy the films onto a disc that is mine to keep. You can even ask for a copy of the radiologist's report when it is ready (a few days later typically) so that you can review it before you see your neurologist for a follow-up.
I remember crying lots of tears at many different times before and after diagnosis. The first year after diagnosis was also difficult emotionally and physically, but fortunately I met some other people living with MS who had been there and understood. Reaching out can be very helpful.
Come back and let me know how the MRI goes on Friday. I hope that getting some answers will help to alleviate the immediate fear.
Take care,
Lisa
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Hello Lisa
I'm glad that you and you compadres had a pleasant and, hopefuly, enjoyable luucheon. Before I start with my symptoms,let me say that, over the years, my MS has become more and more apparent. Some of that is my fault and some just the luck of the draw. My friends and faamily will tell you that I am fairly quick to give instructions on how to help. I may simply say "stand here" or "give me your elbow" to help me stand. I have been astute about what works and is more comfortable for all concerned. Most of the time my helpers are grateful that I get them through with some sort of grace. For example, I wanted to go up on the church stage and kneel at the bench for communion. When my turn came I placed my hand on my sister's shoulder and walked the steps, knelted at the bench, pushed myself up and placed my hand back on her shoulder to leave the stage.....It was smooth. Someone told me later it was well done.
Now, where to begin with my symptoms. Two things trouble me most: my leg strength (front and back thighs) and my lack of balance which I don't know what to attribute. Is it my core muscles or my eyesight/inner ear thats throwing me off. These symptoms have worn me down to not feeling or looking confident....IHAVE LOSt CONFIDENCE in myself. If I fall I cannot get up.
So I set goals. I jus want to stand up from a seated position without grabbing or pushing off anything. Lisa said "I stood up"......powerful phrase....I said "
I want to do that too" I want to walk 100-500 yards with confidence. even with a cane or walker. so that;s it....STAND UP AND WALK .....dammit! It's happened for others. it can happen for me.
Let me continue. My fingers became numb in 09. So I struggle with bras and buttons and typing Tried to buy a button in the front bra today....it was just as difficult as button in the back. Incontenence is in full bloom. Dealing with itwith Depends and (at the Giant) Be Sure diapers.
No one is going to say I don't look like I have MS. The best they can say is that I try hard..I do and will continue to try harder. I hope we all do
Great question
Helen