Thank you
 

for the warm welcome. its nice to meet each of you.

hi bones, roadie and seara.
sorry for the reason you've found us but i'm glad you're here.

hope to hear more about you all.

Hi,

Ran across this site in another forum I belong to.

Had my first MS sx almost 2 years ago - numb arm and hand. Thought it was from doing the rowing machine for the first time at the Y. So much for that theory. Was officially dx October 07. Tried Rebif for a short stint, but we did not agree at all. I have now been on Copaxone since March 08, and seem to be doing well.

Since starting C, had one flare this summer after overheating at the county fair - tingling/ burning cold ??? left foot. That was July 26th. Tried gabapentin for a couple weeks, but the side effects of being out of it all the time just weren't worth it for me. My foot still isn't back to normal, but most of the time, I don't even notice it anymore. Other than that, been pretty good MS wise, I think. What do I know anymore? :p

Also in the last year (about 2 weeks after starting Rebif, so I am blaming that!), I became gluten intolerant. I must say, that runs my life and makes it suck more than the MS at this point!

Glad I found another place to look around, and talk with people that understand.

Hi Pam and a big welcome to you. Come on in and join the party.

I'm glad you found us, I think you'll like it here..:hug:

My name is Dragonfly I have had MS since 2001 or finally diagnosed. I am in the middle of a huge flare up and just finished 5 nights of Methopredision IV tonight.I live in Midland Tx. I am 48 years old. I am going to fax my doctor in Temple Tx tomorrow and ask for LDN

Welcome, Dragonfly, so nice to meet you.:)

The above is an old post, actually, I'm going into my 6th year on LDN and still love it.:D

Be sure to visit our LDN checkin thread and good luck with getting a script from your Doc.

Come on in and join your new Family. :hug:

possible MS w/o any test to confirm?
 

Hello all, I have read so many of these pages and the info has been great. I have not been DX with MS but there is suspicion for it because of intermittent paresthesia. Below is my history.

I am 34 female otherwise healthy Mom and wife.
I got Strep with a fever that I could not bring down and ended up in the ER in May 08. Two weeks later my neuro symptoms started. I felt very weak and legs were sore like I had the flu, went to Dr and blood work showed viral infection. Dr said remaining virus I will get over it. My knee (skin only) had a mild burning sensation without any reason which would last 10 - 15 secs on and off throughout the day. I got very dizzy and lightheaded for a few days and went back to Dr. He did blood work and said everything was back to normal, still must be effects of virus. I felt horrible, NO energy, no appetite, lightheaded, and sick. This went on for several weeks and I couldn't perform my job. I was referred to neurologist and passed neuro exam, EMG, and MRI of brain cervical spine was normal (with and w/o contrast). Neurologist said I think it is a virus, give it time and it will go away. From May to July my neuro symptoms increased to my forearm feeling like there was a band slightly constricting it; my temple tingling; the feeling of "chills" with no visual skin changes, and isolated to a small area like the top of one thigh. My toe at the tip feels less sensitive, like a band-aid is covering it. All of these feelings would only last seconds to a few minutes at the most, but they would come and go throughout the day. Some days would be good and the very next day would be "sick" again. My family Dr and Neuro looked for MS b/c of paresthesia but Neuro said that my symptoms did not match MS that she had seen and all my tests were normal. I stopped Zantac and everything I was taking in fear b/c I didn't know what my problem was and I wanted to see if I could get better. I did, almost all symptoms went away by Aug and everyone thought they would never come back. I started the Zantac again (very bad ulcer and reflux) and got a flu shot in Oct. Two days later the "chills" feeling came back and over the next few weeks, so did the others. I was soo depressed and afraid, anxious ALL the time. Neuro does not know why they came back and has ordered another MRI and will refer me to another Neuro for a spinal tap if I want. I had my Dr. order B12 serum. It was 283 with a note from lab stating 10% of patients have neurological symptoms with level below 400. Neuro said can have problems with level below 500! I started the cyano b12 shots 1ml every day for 7 days, then 1 per week for 4 weeks, then 1 per month. My symptoms are 85% better after 5th shot! I stopped Zantac after reading it can cause b12 deficiency.
I am afraid of MS and I am trying not to put all my eggs into B12 being the case but with the weird intermittent paresthesia I can’t figure out any other reason, and neither can my Drs. I don’t want the spinal tap until last resort. If my MRI comes back normal tomorrow what should I ask my Dr to do next? My neuro is very nice and wants to help but she said after seeing her since June,” in my heart of hearts I don’t believe that you have MS, I think it may be a virus and sometimes we can’t find a reason for everything.” .Have any of you ever heard of a virus lasting this long and presenting neuro symptoms? I don’t have any pain and I have not fallen or had any vision problems. Neuro said my symptoms are peripheral and have to do w/sensory. During all this, for about 5 days my knee (area about two inches on skin) felt like a cold breeze was blowing on it? When I have the numbness sensations I check to see if it is really numb and it is NOT. I feel everything just slightly less during the “spells.” Dr said in MS symptoms have to last for 24hrs to be considered a flare up, do mine count b/c they only last a few seconds but are coming and going through the day. They also change from day to day; my finger can feel numb for a few days then feel normal a few days, then back to numbness again. (when I say numb it is not really completely numb, just less sensitive.)

I also went to ENT and had many tests done for vertigo, again everything normal. Dr said I could be hypoglycemic when I feel light-headed and eating does make me feel better, but not 100%.

Is it possible that all of my problems could be due to overuse of PPI and low Vit b12? I don’t eat meat that much and my diet is not very healthy, but that is changing! Does this sound like early MS that anyone else has experienced? I have had blood drawn for everything many times over 6 months, diabetes, lupus, RA, only things off are B12 and Vitamin D.

I was a normal person before all this, now I worry ALL the TIME! After reading so much on the internet I am scared that I will wake up one day w/o vision or feel paralyzed, or that the “symptoms” won’t go away. I know that some people get diagnosed with MS when they don’t really have it, so I am afraid to go to a new Dr and they just diagnose me b/c of my paresthesia and no lesion on MRI. My second MRI that is tomorrow will be 6 months from my last. If it is normal does that lessen my chances even more of not having MS?



Sorry for such a long and convoluted post !Thanks for any help!

we have a poster on PN
 

who had chronic paresthesias on his upper back.

When he was tested for Vit D and found very low, and when he started VitD replacement he improved.

example:
http://neurotalk.psychcentral.com/thread43954.html

Sometimes if there is an imbalance between Calcium and magnesium, there will be paresthesias, tingling, tight muscles,
cramping etc.

Check out my magnesium thread at Vitamin forum and try one of the good supplements for a month. 7 out of 10 people are typically below RDA intake for this mineral.
http://neurotalk.psychcentral.com/thread1138.html

These are the most commonly appearing problems. Best to deal with the more common first and move on if correcting them does not work. I would continue with the B12.
Zantac and other H2 antagonists decrease stomach acid, which B12 needs to be absorbed. Those drugs also cross the blood brain barrier in some people (more commonly the elderly, but others as well) and cause CNS symptoms. Headache is most common, but confusion, and other things may result.

hello and welcome to all.
glad you found us.

hope to hear more about everyone. :)

Hello everybody, and welcome to NT. This is a great place to be. There are nice, caring people here with lots of knowledge, who can also be quite funny at times. :D

A warm :welcome_sign: to all the new members. Looking forward to hearing more from you on the forum. :hug:

Cherie

Hello
 

Hi, My name is Amy. I have suffered for the last year with extreme muscle fatigue, whole body aches and pains, dizziness, weird facial numbing, my legs and arms feel shaky and uncoordinated, and stiff fingers. My neuroogist says that i do not have MS. Instead he thinks that i have three diffrent diseases to explain all of my symptoms. I am so frustraited. I am taking a ton of various medicines for all my "diseases" and i am still in pain and only able to work a couple of short days a week. I have talked to some other MS patients and their families and they say that the went through the same thing for years before their leasions showed up and they were finally classified as having MS. Do you have any advice for me?

Welcome, Amy..I'm glad you found us..:)

Also, welcome to the, Maybe MS,
Maybe not MS, Club..:rolleyes: Most of us have gone and are still going through what your are.

It's a lot harder to get a DX, these days of all this technology. Certain criteria must be met..and it can be a long process..:(

In the meantime a 2nd, even a third opinion may speed it up a little....and come here to complain because we understand...where the rest of your Friends and Family may think you're nuts or faking it.:mad:

Good luck on your journey to Diagnosis..:hug:

http://i489.photobucket.com/albums/r...s/Welcome2.gif

Hi Amy, welcome to NT. There are a lot of very nice and helpful people on these boards. I'm looking forward to seeing you around. :hug:

Thanks guys!
 

At first most of my family and friends thought it was because of the heat, stress, depression, vitamin defficencies, or mabey i was being dramatic. Even my family doctor eventually sent me to a shrink. The shrink sent me back to the family doctor... I researched on my own and found that every single one of my symptoms match MS perfectly. I printed it out and showed it to the doctor. It was almost humorous watching his lightbulb turn on. He appologized and agreed that he should have come to that conclusion himself. He sent me to a nuerologist. Might I say that the nerve test involving shocks then needles in your muscles really sucked. So far that is the only test result that shows my muscles are damaged. MRI and spinal tap both showed normal... The neuro then decidied that I have several diseases causing my problems. So he is treating me for those problem but I dont have any results from taking the loads of medicicines. I still hurt and I have no strength or stamina. Again, sorry for whining on your shoulder!

Hi My name is Danielle
 

Hi there. My name is Danielle. I am a newbie here trying to figure some things out. I am not yet convinced I have MS, but I sure do have a lot of symptoms. I do not have very good medical insurance and we do not have a lot of money so it is tough to go to the doctor I need to to get help.

I had weight loss surgery about a year and 3/4 ago. (April 2007) I was ding well, lost 130 lbs. I got pregnant 6 months after my surgery. My pregnancy went well, except for debilitating morning sickness and additional weight loss. I had my daughter and went completely off dairy because of allergies in my family. Three months after her arrival I got my first twinge of pain in my right hand side of my sclap. I went to the doc who told me it was dandruff and sent me home. Over the past month my pain has spread (worse on my Right side, possibly because of old neck injury) to my hands and feet. If I get anxious or stressed it travels to my lower legs and into my wrists nd arms as well.

I have never had an eye issue, no spots, no blindness or blurry vision. I have had 2 MRI's, both showed no lesions. I had bloodwork, everything came back as normal except for a pretty good vitamin D and B and iron deficiency which was chalked up to my weight loss surgery. The only thing that makes me worry the most is my ANA blood count it was 1:80. I was told that it was positive.

I have lots of other symptoms I have posted in the main forum asking help with, so I will not go into them here. If anyone knows of a good Rhumatologist in the South Seattle Washington area, I would sure appreciate it.

I mentioned I have 3 small children. THis is my biggest worry. Do most of you that have small children lose the ability to parent the way you used to? I have been overcome with this quest on the internet, I am here night and day convincing myself I have this or that(always autoimmune diseases) I am a wreck, physically and mentaly. My family is suffering quite a bit. Everyone is sick of me and I think they dread seeing me coming towards them.
I am in the depth of despair...any encouragement appreciated.
Lovingly, Danielle

WELCOME, DANIELLE..:hug::hug:

http://i489.photobucket.com/albums/r...Welcome3-1.gif


Hi Danielle, and welcome to NT. I am sure you will find that there are a lot of nice, caring people here. :)

I'm sorry you are going through so much. :hug: I hope that you will be able to find some answers.

Newbie just wanted to say thanks for the forum
 

Hi, I'm not going to make this long as I posted a thread and later found that I had to sign in and had to rewrite my post. :eek:

Anyway, I'm 39 and have rheumatic heart disease. I've been on numerous pills since I was diagnosed in 1984. I was anemic and my doctor prescribed me with iron pills. Last July I found I was losing circulation in my hands and my doctor assumed it was carpel syndrome. Because I lived in a small town doctors came and went and when I went to see another doctor and told him about my problems he sent me to get blood work. when I went back to see him again which was 2 weeks later he informed me that I was very low in B12! It was a wapping 200. I'm not sure about B12 and he didn't really say it was a bad thing but reading the stories on here sure explains A LOT of which is happening to me. Just wanted to thank people who have told their stories at least I know which path to follow.:)

Joy

http://i489.photobucket.com/albums/r...oyizes/Hi1.gif

Hi Joy, and welcome to NeuroTalk. :hug: This is a great place to hang out with lots of nice and caring people. :)

Roadie47
Feeble
avanliew
Kelsolake
ru2l8
dragonflyoneil
PAM423

Let me first say I am sorry for not saying hello sooner over here. A number of you have been greeted in the intro forum, I just neglect this one, I forget its here, ok enough of that, now on to more important matters of state, post to your hearts content. People here are so wonderful, helpful, fun and really kind. Any questions do not hesitate to shoot the question to Sally lol just kidding send it to me, Enjoy the site use it for all its worth, it has been and is a godsend, again welcome to NT and the MS Forum

New here
 

I don't know where to dive in here so I'll post here. I was just diagnosed with MS last week and I am starting Copaxone this evening. I'm having a hard time accepting I even have this disease. I only got an MRI to shut up my opthamologist and primary who insisted I should see a neuro. And now here I am, I have MS. I don't even know where to begin to ask questions. First I have to get through this first shot.

I also have spinal issues and my back has been giving me fits lately. But in the scheme of things, that seems so mundane now. :(

Welcome (not so) Happy Feet..Nice to meet you.:)

I hope Copaxone is your answer to slowing this carpy disease.

Come on in and join your new Family. :hug:

limbo land
 

I have had ms symptoms for 4 years now. Yet, I don't have lesions. The doctors think that it might be MS yet it might not be. I have had numbness for the 1st 2 years, then the symptoms changed to legs pains, coordination problems and tiredness. This has affected my walking for many years.

If anyone has gone through the same thing or can help direct me to good resources, please respond.

Hi, 13monka! Glad you got to the MS board! Now that you've introduced yourself, you might want to start a thread in the main section with your story. There are a lot of limbo-landers around these parts.

Welcome to you and to all the other recent joiners!

:welcome_sign:

Welcome Monka. Nice to meet you..:) I hope you don't have MS, but there are worse things, and if you do, this is the place to be.

Come on in and join us..:hug:

Hello, possible MS here?
 

Hi everyone,
I'm glad to have found your board. I saw a neuro coming up on two weeks ago for dizziness/loss of balance, numbness/weakness in my right hand, double vision, fatigue and some other symptoms. Because I've had hand numbness before the doc was quick to suspect MS. I had an MRI that day. It indicated one small 'spot' on the brain stem, so the doctor decided that it was probably something else and that the blood work would be very telling. We waited out the blood work, which was all normal. Because there's no other obvious culprit, the doctor has ordered a VEP for Wednesday (again suspecting MS), so I'm in limbo right now. Eeeek.

Has anyone been this road before? The maybe-well maybe not-well maybe process? It's infuriating, especially given how terribly awful I feel. I have 3 kids to care for, and I'm doing a generally awful job at it right now. I came to this forum because I feel this is where I will end up, and since the members here have so much wisdom to share, I'd love any and all advice.

Thanks so much,
Kristin :)

http://home.earthlink.net/~sal.pal/s...es/smiley2.gif WELCOME, Kristin..I'm glad you found us.

New to this
 

Good to find this place I have much needed, and hope I may help someone some day. I am rounding the corner of what feels to me as big changes in my life. I am 56 female with MS 20 +/- years. Starting my 3rd year on LTD. Since January I have been down with "it", sort of at home with "it", because of all the years of up and down, ins and outs of "it" (MS), I find myself poorly packed for this one. My suitcase of tricks (coffee, provigil, napping in car) are not working now. . I am on some home care now, which I am glad to have. I joined Netflcks, and I am hoping for some guidance from those who find themselves in a similar way, beached.

Welcome to the "Beached Club", Annerich..:D

I've been a member some 40 years, now, give or take 10 for remission..

Come on in and join your new Family. Happy to answer any questions you may have.

:hug:

Hi Anne, and welcome to NeuroTalk! :Wave-Hello: I've also had MS for about 20 years. This is a great forum with lots of friendly and helpful people. I'm looking forward to seeing more of your posts.:)

http://i489.photobucket.com/albums/r.../welcome-2.gif

Hi
 

Well I guess I will jump in and say hi.

I was diagnosed with RRMS one year ago and have been on Rebif since. I have been looking for an answer to my symptoms since I was about 14. I'm 24 have a four year old daughter and two year old son. I also have a very supportive husband and a wonderful family who I would be lost without.

I was also diagnosed with POTS last June, and now they are in the process of trying to diagnose me with some type of myopathy most likely MG.

I get spells where I can't move or talk and can barely breath. As far as MS goes I have ON, cognitive issues, balance problems and left sided weakness. I have been through so many tests in the last two years I want to scream and will be glad when they finally decide they know what's wrong with me. Well besides the fact that I'm just weird :wink: But I've known that all along.:wink:

I have been on the web md support group for a while know and found this site for the MG support group. I have been on there for a couple weeks now and thought I would join in some conversations here.

I hope everyone is doing good today.

Kristie

Welcome, Kristie....so nice to meet you and glad you are joining us over here.

Sounds like you have a lot on your plate, for a youngster..:eek: I started my journey with MS at your age...many many years ago..:D. You sound like a strong individual and a supportive Hubby and Family is sooooooo important.

Come on in and join us anywhere or start a thread and tell us your story so far.:hug:

hello this is Ozzy, my Fiancee jennifer was DX with MS at 13 she is now almost 20yo there is a thread in the MS section with more info we are here to seek help from others,to learn more about Ms and to help others with our personal two cents. you will be seeing us around.

Welcome again to NeuroTalk... Happy to have you with us.

Jump in anywhere..:)

Popping in to apologize for not stopping by more and welcoming everyone new!! :sorry:

Welcome to everyone!!
Jump right in! :)

Hi my name is Mishi. I have been DX for 3 and half years we rmms. I was on rebif and had a good result but changed to avonex because of convenience and I am yet to see the results of that change. I was in major denial for the first couple of years but think I am starting to cope. I wanted to get into contact with others and hear their courageous stories to help me through the bad times. I really have no idea what this drug is doing to my brain except that it slows the progress of the illness. So if any one has any stories or would like to reply, please do so. Hope to hear from you.