We’re glad you have found this community and whether you are a Multiple Sclerosis patient, someone in limbo looking for answers to unexplained symptoms, or a caregiver, we hope you find something here to keep you around and help you to deMyStify this disease.
We would like to share a few ideas with you that will make using this forum easier for everyone and keep this site user friendly.
There are many users of this site and we love new faces. We encourage new members to start a NEW thread that introduces yourself and a little bit of why you have joined us. If you add your introduction onto the end of another person’s thread it may be missed by most of us. When you feel comfortable doing so, we would love to know more about you and your situation.
As you look through some of our posts you will notice that we write very short paragraphs and like lots of white space. You can write as many paragraphs as you want, but please keep all of them brief. There is a reason for this, and it’s not because we are keeping things simple.
Many of our members have vision problems – that is a common symptom of MS. Lengthy paragraphs of words and words and more words tend to turn into a blur of nothing but words for us to read. It often becomes visually unmanageable.
YOU WILL ALSO SOMETIMES SEE A MEMBER POST IN ALL CAPITAL LETTERS. UNLIKE OTHER PLACE WHERE THIS WOULD BE CONSIDERED RUDE, THE REASON FOR ALL CAPS HERE IS TOTALLY ACCEPTABLE AND AGAIN HAS TO DO WITH VISION PROBLEMS. SOME OF OUR MEMBERS CAN ONLY READ ALL CAPS EASILY, THEY TYPE THEIR QUESTIONS IN ALL CAPS, AND WE TRY TO BE ACCOMMODATING TO THEIR NEEDS BY RESPONDING TO THEM IN THE SAME WAY.
If you post a question and you don’t get a response initially, please feel free to bring it to the forum members’ attention. You may see posts that contain the single word “bump.” This is just to bring the question back to the top of page 1. There are some days that it gets so busy here that questions slip to the second page in a short time and can easily be overlooked. Please “bump” your post if that happens.
There are no subjects that are taboo. Anything goes here when it coMeS to discussing this disease. If you think it, you are welcome to ask it. Really.
Don’t overlook one of the best resources on the WWW about Multiple Sclerosis – our own Health Pages. These HP’s are written by our members and contain easy to understand explanations about the many facets of MS – from working with a neurologist and diagnostic testing, to living with MS. There is an index on the HP site that lists all of the available pages, we believe this index makes the HP's even more user friendly.
Before you post your question you may find it helpful to use the “search this community“ function and read the other information on our site. Often the very question you have has been answered extensively in previous discussions.
We encourage you to use the “search this community” function for reference but to START A NEW DISCUSSION if you need help or more information. If you add onto an old post (the dates are found at the top of the thread) many people will not take the time to read your addition.
There are several co-community leaders (co-cl’s) here and each one has been diagnosed with this MiSerable disease . The co-cl’s are all volunteers and also have responsibilities outside this forum. The co-cl’s are here as much as possible to help with questions, but this site relies heavily on its members to help.
Our members come from all walks of life, and have varying degrees of experience in battling this MonSter. The diversity of our members is rich and keeps this forum interesting and engaged. We count on each and every one of our members to pitch in and welcome new members, answers posts where they can make a contribution, and support each other with encouragement. This community belongs to everyone and is made stronger when there is a variety of voices being heard. So please jump in and help.
Welcome to this small haven on the web – we hope to see you around often.
I love the cap idea . My vision is messed up and it's hard for me to see. If you hold down CTRL and scroll the wheel on your mouse it makes everything bigger and smaller.
I found it out by accident a couple years ago and it helps me a lot.
i was on the dr's forum, and saw that it takes them quite a while to get back to us. just some questions for you kind people who may or may not relate, but have at least some experience. here is my issue----
im 29 years old, generally good health (besides high cholesterol and controlled asthma). I'm 28 weeks pregnant with normal blood pressure, and so far a pretty good pregnancy.
one week ago, i woke up seeing a wierd spot in my eye, went to an opthamologist and a retinal specialst who both said they saw a little bit of fluid in the back of my eye, and that nothing to worry about that the few things that could have caused it will self resolve, and that the spot itself may be visible for a few months.
since then.... Ive been getting wierd symptoms for 4-5 days now. It's tingling/vibrating sensation thru my hands, feet, legs and arms....and very occasionally thru the side of my head. i have no pain..... and no other issues....(no walking issues, no pain, no blurreed vision etc)... i went to my neurologist, who did the "point to ur nose/touch my fingers, etc examination" , checked my blood pressure, etc. she said i look perfect, has no idea whats causing the tingling sensations and said if anything gets worse to call her back.
she did an mri of brain w/and without contrast 6 months ago witch was completely normal.....a cbc blood test 2 days ago, completely normal (accept for slight anemia probably pregnancy induced) .....also my thyroid was checked 6 months ago and perfectly fine.
my questions are --- from your experience do you see MS as a possibilty ?? or something worse??? im very concerned and scared. noone has answers for me.
I just read your story, I'm still trying to get the hang of things on this website...I'm an RN struggling with issues which is why I came here. But as far is I know, medically and personally, for MS, a positive ANA can be done in blood work but is only suggestive for a wide range of diseases. A spinal tap and MRI of the head and consultation with a neurologist can confirm diagnosis. I have had CBC blood work come back normal when I was obviously so sick. All a CBC really is is Hct, Hgb, RBC-baasically counting the blood cells and what they contain. Not specific at all.
I just wrote a RN type of response to someone, but now thought I should come back-my story really is told in a prior posting, but thank you for showing me this.
Basically I'm in limbo land and am not sure if I have MS, but am a RN, and can take an educated guess at things as I cant get into see a doctor/specialists or get proper tests ordered right now.
I dont want to be one of those people obsessed with health, and really im not, but how can I not be when this disorder has affected all areas of my life??? Im 23 years old and cant do anything I could 1 year ago and am so sad. How much longer will it be like this???? I cant even leave my house anymore!!!
-Neuro. Diagnosed Cervical kyphosis, nerve related symtpoms.
-Perfect vision until 8th grade. Was so embarassed when they told me I needed glasses. It has been getting worse ever since and I see floaters.
-GI problems. Thats a crazy history. Right now I went from bowel obstruction constipation so severe to explosive diarrhea.
-Joint pain. My knees felt like grapefruits this morning, my walk is getting stiffer
-Fatigue so bad it hurts me, it hurts to be tired.
-And pain so bad Vicodin doesn't work, nor do OTC meds. I just rub Icy Hot everyhwere and do epston salt tub soaks.
-And much more! :) Bbut this flareup all started after I got a recurrent and persistent infection of tonsilitis and thhis STD...yikes...Epstein Barr? I dont know
-My guesses: My friend just died, I just saw her 9 months ago, from lymphoma- with symtoms like mine-is it really sebacceaous gland MRSA or carcinoma, cancer. Muir Toures Syndrome, also Cancer. Or MS, with cervical spinal cord injury, secondary to head truma when I was much younger.
-Do you have any guesses? I'm just so tired and so sick and tired of being sick and tired. Literally. I cant leave the house anymore or drive and my phone died-bad luck I know. So my only communication now is the internet and screaming for help....
I just feel like Im dying. and I kknow what that feels like as I just recovered from anorexia 9 months ago, I almost died then apparently. I also OD'd 41/2 years ago and did die, but was brought back, so I do know what its like. I am stable, and happy, today. I worked with Hospice patients as well, I see the signs. Im scared and people listen but no one hears me. Its so much pain to not be heard
hi naynayt and sldylani. You have posted on the introductory thread for this forum and you won't get a personal reply to your questions. Please take a moment and copy what you have written here and paste it into a new question, please. I'm sure everyone here would love to meet you and offer their welcomes and advice. - Lu
Thank you for the most welcome I've had in a long time! I feel as if I belong here, finally! I was diagnosed with Fibromyalgia in 2009. I didn't fit in at the local group meetings I attended nor did my symptoms come close to their symptoms-except for the fatigue-so I was treated as if I were from mars. The Group leader told me about the burning in my skin, "That's not a symptom of Fibro, have you talked to a Dr abt MS"? The Neuro sent me there!
I recently got a new Neuro & a 'Clinical diagnosed of MS', so far-more tests to come but some already....indicative.
greeting to all the new people here . You can post here, but keep in mind we don't answer your questions in this thread. This is meant to be a welcome statement and a quick overview of how this MS forum works.
Be sure to start a new thread and tell us all about yourself and your questions. We love to greet new people.
I'm also an RN and have had MS since 1974, but not diagnosed until 1986. It was quiescent until last 2 years, now I have trigeminal neuritis from a plaque in the brainstem and very low T cells, probably from the gilenya, but my neurologist wants me to stay on it. I am also scared - sometimes it is worse to have knowledge of all that can go wrong.
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