Hello redbull5604 and welcome to NeuroTalk.

There are no symptoms which are unique to MS.

All of the MS symptoms you may have read/heard about can be caused by many conditions/illnesses/diseases.

Hopefully you are working with a Doctor who is ruling out other causes for your symptoms.

Take care...

New Member
 

My name is Rick Smith, and I'm a new member (11/8/13). I broke everything in a car wreck in 1988. I've had 2 Boston Scientific SCS units for about 6 years, and NEVER turn them off, or down. One is lower back and one is neck. Now, because of spinal degeneration, they want to do traction to try and help the pain. I have already had one electrode break about six months after implant, but they worked around it (sort of). I just emailed Boston Scientific for an OK, and I haven't heard back yet. I'm afraid the electrodes will either break of disloge under traction. Has anyone got experience with this?"

Hi Everyone
 

Hi Everyone! I am a new member and I wanted to introduce myself. My name is Nikki, and I am 25 years old. I am new to this whole online forum thing, so please bare with me.
I have been dealing with my "issues" for almost 2 years now. I am still un-diagnosed, but my doctors keep coming back to the MS diagnoses. I just had my 3rd MRI done in the past 2 years. (Haven't received the results yet) This is supposed to be a stronger more detailed MRI then the first two and they are hoping that they will see something other two missed. We have been on the long road to figuring out what is causing my symptoms. I have been tested for Lupus, vitamin deficiencies, Lyme disease, Sjogrens, strokes, and i am sure more things that i just don't remember right now.
I know that the answer will come at some point, and the key is to be patient. But that, at times, is easier said than done. I understand that it is important to find the right cause so you get the right treatment. I don't want to be treated for something i don't have. I have read that MS, could be difficult to diagnose. And at times it can take a while before they can give a positive diagnosis. Sometimes my feelings are so mixed, about the possibility of a diagnosis. The prospect of living with something like this for the rest of my life scares me, but the idea of having an answer almost gives me a sense of relief. Is this normal, or am i just crazy??:confused:
Reading your posts have been great. It is great to know that i am not the only one having these problems. And that there are others out there with whom I can relate to. My family and fiance are super supportive and helpful, but it is nice to know other people out there understand what i a going through. So the long and the short of it is, Hi! and i am happy that i have found you guys. :D

Welcome Nikki. We are happy to have you.:)
I'll be saying a prayer that your MRI proves a DX, this time.
I hope it isn't MS, but there are worse things.

Please do stay and join our little club, that none of us ever
wanted to be a member of.:D

"The prospect of living with something like this for the rest of my life scares me, but the idea of having an answer almost gives me a sense of relief. Is this normal, or am i just crazy??"

Hi Nikki and welcome to our community.

Many people who go through the diagnostic process and all of the time and patience that takes, have said that once that they were diagnosed, it was a relief (of sorts)...so yes, this is normal and no, you are not crazy to think this way.

I hope that you get some answers one way or another.

With love, Erika

Introduction
 

Hi everyone.
I am a 45 year old man. I was diagnosed with hemangiomas in the vertebrae of my spine in 2008 and in 2009 I was diagnosed with MS after my immune system took a dislike to me. I am looking for answers as I am not convinced I actually do have MS.

Welcome Pete. Nice to meet you. So sorry as to why you're here, but
happy to have you join us. What answers are you looking for. We
are not Docs, but may be able to answer some of the easy ones.:)

Thank you for joining us.:cool:

broken foot not healing on MS leg
 

my sister has been diagnosed with MS and has been in treatment for over ten years. She fell four weeks ago and broke her cubic bone across the top of her foot. It doesn't seem to be healing at all, do we need to see an orthopedic with MS experience?

Hi Punkin, sorry about your sister. :(

I would deffinately see an Ortho. I don't know if an MS specialist is Let

us know how she gets along.:hug:

Recently DX
 

Hello,

My name is Michelle I just turned 36 years old and after 6 years of constant pain and slowly worsening disabilities I was diagnosed Dec 2nd with MS. I should have been dx last December but the Radiologist who read my MRI said it was clear. The neurologist I saw Dec 2nd dx with the very same MRI. I had 9 lesions on that scan and am a bit afraid of what the follow up MRIs will show. I had brief relief getting dx but now I find myself in a crashing depression. Every morning I wake up and think, this is the rest of my life. Walking with a cane, soon to be crutches and having difficulty doing absolutely everything. There is nothing I do that I do not struggle with. I am exhausted all the time and have no stamina. I still do physical therapy at home 6x a week but everything seems to get a little bit harder. 1 year ago when I had my first MRI I walked without assistance aids and could manage 25 minutes at 2.4 mph on the treadmill. Now I have days where 4-8 minutes at 2.0-2.2 mph makes me want to give up all together. I have a 7 year old son whom I have never been able to run and play with. This all started when he was just 18 months old. Reflecting back I can remember symptoms and episodes as early as about age 9 and many through my teenage years but I always recovered after a day or two. At this point I'm just scared to death about what the future will bring. I've started Ampyra and my doc wants me to start Tysabri after my blood test and follow up LP and MRI. There is much, much more to my story as I'm sure there is to everyone's. But for now, that's me.

Hello Michelle, welcome to NeuroTalk.:hug:
I'm so sorry for your DX of MS, but glad you found us. I have had MS
for 48 years, DXed for 37 years. So, it is not a death sentence or the
end of your life, as you know it. I'm still here and going strong,
most of the time.:D

Tysabri is a favorite of a lot of Neuros, because it is effective in many
cases, but not all cases and it does have a danger of contracting PML
(an evil and sometimes deadly disease). Your Neuro should have you
tested to make sure you are not a possible candidate for PML.

No Med we have out there for MS, is a cure, and some have debilitating
side effects, so the decision to take one is yours. Educate yourself about
all of these meds and then, if you wish, you and your Neuro choose the
one that is best for you.

Thanks for joining us and I wish you the best. :hug:

Hello Michelle,

Welcome to our community, but sorry that it is under such circumstances. An Ms diagnosis is not the end of the world or the end of your life. Many people have flares and periods of remission, with and without medications.

Please know that we truly welcome you here for support, a source of information and a listening ear.
Please keep us posted on how you are doing. :hug:

With love, Erika
Diagnosed 1978

Welcome to NT…part of knowing what is causing your symptoms empowers you as a patient-at least you know what to look for, and what treatments will lessen the symptoms. Some people wait years for a dx…

Tysabri is a very strong drug…and there are many new drugs for MS approved that might not have the threat of PML that Tysabri does. You might want to do some research on treatment options to see if this is the best fit for you.

Depression is a symptom of MS, but the limitations it places on our lives can make us feel depressed as well. Have you tried antidepressants to help you?

I look at life as a load of lemons we're given; some are given enough to make a glass of lemonade; others are given enough lemons to provide lemonade for a professional baseball game. Sometimes I sit amongst the lemons and sob; other times I grab my sugar and water and get to work making lemonade out of all those lemons.

I hope tat as you travel the road that MS has brought you on, you learn that there are moments that aren't all bad. We are a group that has lots of info. experience, laughs and hugs.

Keep us up to date on how you're doing, and how your treatment plans come along:hug::hug:

Starting the Journey
 

Hi, I'm Alex. My Prime Care Physician is about to start running test to see whats going on with me. I have pretty much all of the MS symptoms, some of which started when I had a left thalamic stroke 8 years ago, then got worse after suffering a concussion 18 months ago. The total exhaustion, the trembling, the stumbling and tripping over air is so frustration. I can't seem to focus at work or home anymore, feels as though I'm getting dumber by the month. Its like my body and mind are going downhill. I wonder if the stroke and the concussion could have kick started something?!?!?

Hi ,Dayton, nice to meet you.:) I'm Kettering, Oh here. Are you North,
South, East or West? A bunch of peeps in the Dayton area, have MS.

You'll most likely have to see a Neuro to be diagnosed. Your PCP can
get you an appointment with one. So sorry about the stroke, (if it was
one?). My DD also has MS and they thought she had a stroke, but
it turned out to be MS.

Sounds like you have had some trauma in your life and yes, that can
trigger MS to come alive, if it's there. Stay as calm as you can and
go with the flow. Stress only makes things worse.

Welcome and Stay with us and let us know how it goes for you..:hug:

Alpha Lipoic Acid has helped me over the years. I've tried neurotin, gabepatin, and cymbalta, the side effects of all were awful, at least if you wanted to function at work awake. I take it daily and it does lessen the pain as opposed to total pain.

Thanks Sally. I actually live in the Oregon District. A lot changed after what the hospital called a left thalamic stroke...spent week in hospital. Apparently they saw a history of little ones. It just seems like everything that was going on with my body, right side numbness in face/body, pain, stumbling all over, trembling, etc kicked up a gear after the concussion 18 months ago. Plus I was caretaking for my parents, father passed last year...lots of stress at work and personally. I've just noticed that my body in the past few months seems to be in "rebellion". Doc knows something is wrong, just trying to figure it out. Its affected my digestion, vision, etc. I just want to curl up somewhere and sleep all the time...which I can't. lol

Hi Dayton,

Welcome to NT.

Wow, it sure sounds like you've been going through some sort of a rough patch physically, as well as having some major stresses along with it to deal with.
Sure hope that you get some answers and that you feel better soon :hug:.

With love, Erika

Thanks
 

Thanks Sally. Ur opinion got me to thinking. Things have been slowly going down hill since the stroke 8 years ago. It's been a struggle, especially care taking for my parents. Dad passed last year. I've ignored my body for a while being so busy. But I knew things were getting worse with memory and concentration. Error rate shot up at work...started forgetting real import ants things. Exhausted by time I was dressed for work, wiped out by 2pm. This started out with pcp wanted to check pancreas. Scheduled for sleep apnea test also. Glad I found this site...don't feel as confused about what my body is going through.

My name is Shirley. I am waiting for a diagnosis. They are trying to figure out if I have MS or MG.

Hi Shirley, nice to see you. So they haven't figured it out yet huh?
Not to worry, you will probably figure it out before they do.:rolleyes: It's frustrating!!

What are your MS like symptoms? What tests have you had and what
meds are they giving you to relieve some of your sx?

Hang in there and come here anytime for support and caring.:hug:

Welcome, Sham, I hope you get the answers you need.

See you around the board.
ANN

Hi everyone,

I posted in the MS forum thread but not here.

So to introduce myself, I'm Christy. Probably over the other side of the world to some of you as I'm in Australia.

I have an MRI in April to see if the MS my neuro believes is present will show up. Trying to get as much information as possible before then! Forewarned is forearmed so they say :)

I've had symptoms for 13 years so I'm not entirely "new" to this. Just slack getting myself back to the neuro. Finally caved when I stopped being able to do things.

The worst part is not being able to use chopsticks anymore lol. Well, possibly not the worst. But it still sucks.

Hope to chat with you all soon :)

Cheers

Welcome Christy, happy to have you here.:)

Thanks Sally :)

I love your little signature saying!!

Introduction
 

Just a regular guy here, except for being pretty well crushed when my car was t-boned by a truck.

Dx's as of 10/20/2013: L1 through L5 disks herniated into spinal cord, as are T4 through T6, and C2 and C3. Broken larynx, sternum, left clavicle, eight ribs, shattered left scapula, torn left rotator cuff, torn labrum (X2), detached biceppital*tendon, broken left femur, and a destroyed left knee.

Should anyone ask, to paraphrase Mary Todd Lincoln, I did enjoy the play.

Best to all!

Welcome to NeuroTalk Crashedbad.:hug:

dyesthetic itching
 

I dont really know where to begin other than I'm just at a loss right now. I started having an electrical shock feeling and uncontrolled itching in my left shoulder and down my inner arm about 2 years ago. Went to the neurologist ,had an MRI and he found 2 cavernous angiomas on my spine that he wants to" watch". He also said that these were not causing my symptoms that he did not know what was causing the symptoms but he did offer to give me some meds for the symptoms. Well I dont want meds I want to know what is causing the symptoms.Its time to go back for my annual MRI and I dont want to see him. I want to see somebody that is interested enough to try to find out what is going on. I still have the burning,itching and feeling like I have a sunburn on my shoulder constantly. I can stand it but it is annoying. Seems that it is worse at night and the more I scratch the worse it gets. I read that dyesthetic itching especially from the cervical dermatomes can be a symptom of MS. So why cant he do more testing other than just telling me that he just doesnt know whats going on? Frustrated

Hello radrn, and welcome to our community.

Sadly, the experience you describe having with the neuro is one that many of us have gone through. There are so many things that cause the symptoms that you are having and finding a practitioner who will investigate the cause of a single neurological symptom is difficult unless there are other symptoms as well that point toward a particular condition.

Having said that, you could start by having your Vitamin B12 and Vitamin D levels checked, as both of these can cause neurological symptoms.
Please keep us posted on how your visit with the neuro goes.

With love, Erika

Welcome radrn, nice to meet you. :)
stay with us. We will try to help you through.:hug:

Intro Hello
 

Hello Everyone

I'm new here and wanted to say hi. I am new to the place but not the illness of MS. Diagnosed in 2005 I have pretty much lost everything from my husband and house to the use of my left foot which doesn't hold my high heel shoe on it any longer. Recently given, the news of a positive JC Virus blood test result. because of no blood work ever being done, in time, for the antibody to the JC. Along with too many treatments of Tysabri ( almost 4 yrs). They tell me I can never take treatments for MS of any kind again.
Without compromising the virus and PML. Which they only tested me for once a year ago. (PML). They really can't be sure if I carry PML or not. :confused: very similar signs.

Any information regarding experiences and knowledge around blood work at this time or what I should do regarding my rights even to get some good background information on facts regarding what happens regarding this JC VIRUS and the illness itself. I haven't been feeling well for a long time. :(

I have to thank my daughter for finding this for me. I had no idea.....

:eek:

Susan

Hi Susan and welcome to our community. I wish it could be under better circumstances :hug:.

I'm sorry but I don't have any info on JC virus/PML, but there is a thread for those who have been using it. Perhaps you could copy and post your introduction in there, as some folks don't visit this one as frequently.
Hare's the link:
http://neurotalk.psychcentral.com/thread142931-43.html

Also, please do join us in the other threads and keep us posted on how you are doing. There are a lot of folks on here that have had a wide spectrum of experiences with MS and the issues that it presents...even a few fellow Canadians :winky:.

With love, Erika

Welcome to NeuroTalk, Susan, good to have you join us. So sorry as to the why,
but so glad you found us.

The JC virus sits dormant in many of us, just waiting to be awakened. In some
instances, Tysabri can wake up the sleeping tiger. Your Doc, I think, is wise
to ask you to stop your taking Tysabri. PML is either a fatal or very debilitating
disease.

I'd choose not to keep taking TY, after testing JC positive, but some do and,
so far, here, they 've been lucky. And TY does seem to be helping them lead
a better quality of live. it's your choice.

Please do join us and enjoy your stay.:hug:

Hi There...new here!
 

I'm was dx'd in July of 2013, but have been dealing with MS symptoms since my onset attack in 2010. It took almost 3 years for a dx..which was very frustrating. Most of my MRI's didn't show lesions and I didn't have the best doctors. I'm now working with a fabulous doctor and am trying to do everything I can to live a normal and healthy life.

I've been on Copaxone since November, and unfortunately, I'm not sure it's working. There has yet to be a month where I've been symptom free. I have an MRI scheduled in the next few weeks to see if there are any new active lesions. If so, we will asses the med situation then. I've tested positive for the JC virus, and my numbers are quite high, so neither my doctor or myself feel comfortable with the Tysabri option. I actually don't mind the Copaxone and the shots, and am really hoping in time it will work. But, we shall see.

Currently, I'm dealing with Optic Neuritis in my right eye and am having difficulty seeing. This is a totally new symptom for me.

My mom suffered with Primary Progressive MS from age 17-34 and eventually passed away after a being diagnosed with Breast Cancer. So, I'm truly happy to find a group of people I can talk about my MS with...it can get pretty lonely at times. My husband and support group are fantastic, but sometimes it's really nice to talk with people who are going through the same difficulties as yourself.

I look forward to getting to know everyone!!

Jess

Hi Jess and welcome to our community.

There a lot of folks here who have similar experiences to what you describe with respect to the time it took to get a diagnosis, as well as folks who have been using Copaxone.
This is definitely a great place to get and share information, support and to just vent when the need arises.

Look forward to seeing you on the board :hug::hug:.

With love, Erika

Welcome Jess, nice to meet you.:)

Please do come in and join us. We are here
to support each other through thick and thin.:hug:

Thanks, everyone! I'm very excited to be here! I don't know why I didn't join sooner.

I'm Back
 

I'm still in limbo here, finally got to see neurologist last week. She said I had about 5 white spots on my brain. Set me up for a EEG and more blood work. Implied that it could be depression, I told her if I'm depressed its due to my body acting goofy and not doing all I want it to. I could have Post Thalamic Syndrome with the symptoms (from Left Thalamic Stroke Thanksgiving 2003). I've had some level of numbness on right side of face and body since then, with periodic pain shooting up and down. This is a frustrating journey, especially when you can't explain to employer "WHY" you're stumbling and bumping into things, have brain farts, getting confused, and soooooo tired. I was just annoyed that the Dr kept warning that I could just be depressed. Depression couldn't possibly do all of this, and for most part I'm happy and enjoying people, I jusst get frustrated with my body and not knowing for sure whats going on. Anyone else felt like this? Hey "Neighbor Sally" :-)

New to forum, ms dx 6/2004
 

Hi,
I am new here and trying to find my way around. I was diagnosed with RRMS in June of 2004. I have taken Avonex and Rebiif and just began with Tecfidera a couple weeks ago. Trying to find more info from others regarding their experience with it.

Hello OmaDot and welcome to our community. Sorry that it is under such circumstances, but there are many folks here that have a vast and varied experiences with MS and treatments. Here is a thread that may provide some info and get you in contact with those who are using Tecfidera.

The "Positive" Tecfidera/BG-12/Fumaderm (modded) Thread! - NeuroTalk Support Groups

http://neurotalk.psychcentral.com/thread187662.html

With love, Erika