Hello, I'm new here and I "probably" have MS.

[ibuzz]

I don’t have a definite diagnosis yet, but my dr. says I “probably” have MS. It started with numbness in my hands. I thought it was due to stress but about 3 weeks later I developed Lhermitte’s sign. So I had an MRI and they found one lesion on my cervical spine. My brain MRI was normal. I had a spinal tap and there are o-bands in my CSF. My VEP came back abnormal which I expected because I’ve been seeing “flashes” in my peripheral vision, mostly when I’m in a dark room, and around the same time the Lhermitte’s started I had some pressure/pain behind my left eye when I moved it that lasted about a week. So the dr. recommended that I start treatment, even though she can’t give me a definite diagnosis. I’m starting Copaxone on Thursday.

I hope I’m doing the right thing. I want to do whatever I can to delay the progression if this is MS, but I don’t want to be taking injections if it’s not necessary or won’t help. I can’t be sure if this is RRMS, PPMS, or what, so is starting therapy the right thing to do? I asked my dr. if the MRI could have missed something in my brain but she seemed very confident that if there were a lesion, the MRI would have found it. But if there’s nothing on the brain, what would cause an abnormal VEP? It’s all so confusing and I know there aren’t any definite answers. I’m just trying to find a way to cope with all of this. I keep trying to remind myself that I’m very lucky – my symptoms aren’t that bad, a lot of people have it much worse than I do. But I just don’t understand why this is happening. And I’m scared that it will continue to get worse and worse. I’m trying to stay optimistic and believe that maybe I’ll be one of the lucky ones whose symptoms stay minimal and tolerable, which is why I’m going on the treatments. It’s just that fear of the unknown that is really getting to me right now.

To anyone who is reading this, thanks for listening I’m hoping it will help to share my experience and to hear about yours.

[gypsy]

Hi ibuzz,

The fear of not knowing for sure has to be immense.
I was lucky in terms of getting a very quick diagnosis. However the 2nd neuro I saw (also now my current) said he would have started me on meds right away, even without a confirmed diagnosis, also to ease progression. So I "lost" a couple of weeks where I could have been on meds. But, I'm on them now, and I am showing some signs of relief of these symptoms.

I will also be starting Rebif soon. I know this is scary, Im scared everyday. But this forum has offered so much support, I can't thank everyone enough. I hope you get some answers soon, and I personally would go with what the doc has ordered.

[ibuzz]

Glad to hear you're getting some relief from your symptoms. I hope the Rebif works well for you, good luck!

[502E79]

Welcome Ibuzz!

To anyone who is reading this, thanks for listening I’m hoping it will help to share my experience and to hear about yours.[/QUOTE]



Your disposition shines through in your letter! :-)

You will deal with whatever comes your way (and there is a lot of support here).... May not even be MS.

But if it is... know that early detection and (as Gypsy said) early treatment can slow things down. I've heard that most dx is RRMS. That appears to be the most common.

Also a dx of RRMS often results in Copaxone (I'm on it for 2+ yrs without problem {no flares}, as you may read about). Even an injection daily becomes routine within a few months. I have had no side effects.

One last thing, you will hear that MS is different in all of us and it is apparently true. That said, I know that I have had symptoms for at least a dozen years before I was dx. I can still walk, talk, think etc. without much problem. So I'm an example of slow progression.... Yes my fingers are still crossed!

Oh and a note to Gypsy (from another thread): RE: Tattoo... You think of "MonSter / Pink ribbon" as a visual in which the ribbon curtails whatever you decide should represent MS....

If you don't know who "Hot Stuff" is, google and you'll see a small devil character. He may look good trapped in a Pink ribbon / diaper with a scowl... a different approach, FWIW


**personal blog removed by Moderator in compliance with MSWorld guidelines. this may be put in your profile for all registered, logged-in members to see**

502

[JoanFrances]

Hi there Ibuzz

Waiting is of course stressful and scary, but it sounds like you are in good hands.

You found a great place to learn about the MS and to be able to vent your fears or even anger if you need.

Wishing you all the best with your treatments. Please let us know how you are doing.

[KoKo]

Hello ibuzz

Welcome to the MS World Forums!

Most of us have had the same type of confusion and fear as you have.

Sometimes it's a wait and see to determine the type of MS.

Meanwhile if you start on Copaxone, just remember that you can always stop taking it if it's not right for you.

If possible, continue to remain optimistic. Taking each day as it comes works well for alot of us. If we focus on this day, and not so much on a future that isn't even here, we feel better.

We're here for you. Keep us informed with how you're doing. Best wishes

Take care,
KoKo

[ibuzz]

Thanks everyone! I'm glad I found such a great support system here

[Confused101]

Hello ibuzz. I'm in a very similar situation as you. My neuro said I probably have MS, even though she can't give a firm diagnosis and I am supposed to start copaxone on Tuesday. I've never had any symptoms, but an MRI for a headache last year showed small white spots on my brain and one on my spine. Personally, I'm just not convinced that I need these meds now. I'm afraid of the side effects and all this feels like a life sentence or something. I wish I never had that MRI, but my dr says I should consider myself lucky, I just have a tough time seeing luck in any of this. Really afraid that the copaxone injectins are going to make me sick, as I read they've made others sick. I can't seem to justify the risk/benefit here. have you started copaxone already? If so, how are you doing with it? Side effects?

[ibuzz]

Hello ibuzz. I'm in a very similar situation as you. My neuro said I probably have MS, even though she can't give a firm diagnosis and I am supposed to start copaxone on Tuesday. I've never had any symptoms, but an MRI for a headache last year showed small white spots on my brain and one on my spine. Personally, I'm just not convinced that I need these meds now. I'm afraid of the side effects and all this feels like a life sentence or something. I wish I never had that MRI, but my dr says I should consider myself lucky, I just have a tough time seeing luck in any of this. Really afraid that the copaxone injectins are going to make me sick, as I read they've made others sick. I can't seem to justify the risk/benefit here. have you started copaxone already? If so, how are you doing with it? Side effects?

Hi Confused101 - I have my "injection training" tomorrow. I'm pretty nervous about it but I really feel like it's the best thing to do. I know that if I don't start treatment and have a relapse, I will always wonder if I could have prevented it by taking the injections. And I figure if it doesn't work for me or if the side effects bother me too much, I can always stop taking it and try something else (or not take anything at all). I think it's a very personal choice, it really depends on how you feel about it. Personally, I know if I don't take anything and have another attack later, I'll regret it. I'm just going to do it and keep my fingers crossed that it works well for me. I'll keep you posted!

Have you had a spinal tap or evoked potentials? Did your neuro explain why she couldn't give you a definite diagnosis?

[ibuzz]

Hi again Confused101 - I just answered my question about why your neuro couldn't confirm the diagnosis. It's because you haven't had symptoms, right? I'm still learning but I do think a spinal tap and evoked potentials should be ordered. My neuro suggested them even though she still wouldn't be able to diagnose me because if these tests are positive, it makes the possibility of MS more likely. Plus, it doesn't hurt to have the extra information for your file.

[Confused101]

Hi Confused101 - I have my "injection training" tomorrow. I'm pretty nervous about it but I really feel like it's the best thing to do. I know that if I don't start treatment and have a relapse, I will always wonder if I could have prevented it by taking the injections. And I figure if it doesn't work for me or if the side effects bother me too much, I can always stop taking it and try something else (or not take anything at all). I think it's a very personal choice, it really depends on how you feel about it. Personally, I know if I don't take anything and have another attack later, I'll regret it. I'm just going to do it and keep my fingers crossed that it works well for me. I'll keep you posted!

Have you had a spinal tap or evoked potentials? Did your neuro explain why she couldn't give you a definite diagnosis?

She couldn't give me a definite diagnosis because I've never had an attack or any symptoms related to ms. So I can't even be considered a Clinically Isolated Syndrome. I'm what they call a Radiologically Isolated Syndrome (RIS) or something like that, because all I have is the MRI results that show demyelination. And I am concerned about that, just not convinced that its MS. And if it is MS, I guess it hasn't been active and I wonder if it ever be. Never having had any symptoms, I am afraid that I'm going to suffer more from the copaxone side effects than I might from MS, because it may never be active. The neuro told me that its a 50/50 chance, her exact words were 'its a cr#p shoot'! I don't like to gamble....so I agreed to the drugs, but then thought about it more and I'm just not convinced I need them. I scheduled an appointment with another neurologist today for next week. Going to ask her to convince me why I need these drugs and going to ask for a spinal tap. I have not had any other tests except for the MRIs. I do know what you mean about regretting it later. I would rather take the injections than regret it later. For some reason I just haven't been convinced why I need them if I don't have any symptoms.
Good luck with your training tomorrow! I hope everything goes well. Let me know how you are feeling.

[cosake]

Good luck with your decision. It's difficult to decide what to do -- because it is a cr*pshoot.

I had symptoms in January 2010 and ad brain MRI with 2 or 3 lesions at that time. But didn't want to start on meds until I had more definite evidence.

Follow up MRI showed no new lesions a few months later. Had back and neck MRIs - both clear. Had LP -- and spinal fluid came back positive for o-bands and antibodies. So, I'm technically still considered MS-CIS, but I'm only one relapse or lesion away from full MS diagnosis.

That was enough evidence for me to decide to start treatment. I start Betaseron in August.

This is a great place for support.

[Determined Dawn]

We are fortunate!

Hi, ibuzz! As I was reading your post I picked up on the flashes of light in your peripheral vision. I, being recently diagnosed just 2 weeks ago, have the flashes of light too. I'm thinking they must occur all the time, it's just that you can see them when it's dark out. I've begun taking Rebif injections within the past week---going well. When I had my MRI, 25-30 lesions were located in my brain. My neurologist seemed suprised that I was "in tact", except for a couple of episodes where I lost my sight for a few minutes. I understand how you feel---not knowing what to expect---it is a little scary. But, for myself, I'm very grateful that there is medication out there to slow the progression. I have a younger sister who has spent 1 year and who is currently in a nursing facility because of "generalized weakness" and continued falling from an unsteady gait. When I was diagnosed, I read tons of literature/articles----since then, I have contacted my sister's doctor and have arranged to have her records sent to my neurologist. Not being a doctor, I can't say that she has MS, but soooooo many symptoms exist that point to MS. It is my guess that if she has MS, she is probably at a Secondary Progressive stage. I look at her and am so thankful for the medication I was started on. I'm hoping that there may be some help for my sister as well. You are right, ibuzz, there are other people who have it worse than we do. I believe we are the fortunate ones. God bless you!

I don’t have a definite diagnosis yet, but my dr. says I “probably” have MS. It started with numbness in my hands. I thought it was due to stress but about 3 weeks later I developed Lhermitte’s sign. So I had an MRI and they found one lesion on my cervical spine. My brain MRI was normal. I had a spinal tap and there are o-bands in my CSF. My VEP came back abnormal which I expected because I’ve been seeing “flashes” in my peripheral vision, mostly when I’m in a dark room, and around the same time the Lhermitte’s started I had some pressure/pain behind my left eye when I moved it that lasted about a week. So the dr. recommended that I start treatment, even though she can’t give me a definite diagnosis. I’m starting Copaxone on Thursday.

I hope I’m doing the right thing. I want to do whatever I can to delay the progression if this is MS, but I don’t want to be taking injections if it’s not necessary or won’t help. I can’t be sure if this is RRMS, PPMS, or what, so is starting therapy the right thing to do? I asked my dr. if the MRI could have missed something in my brain but she seemed very confident that if there were a lesion, the MRI would have found it. But if there’s nothing on the brain, what would cause an abnormal VEP? It’s all so confusing and I know there aren’t any definite answers. I’m just trying to find a way to cope with all of this. I keep trying to remind myself that I’m very lucky – my symptoms aren’t that bad, a lot of people have it much worse than I do. But I just don’t understand why this is happening. And I’m scared that it will continue to get worse and worse. I’m trying to stay optimistic and believe that maybe I’ll be one of the lucky ones whose symptoms stay minimal and tolerable, which is why I’m going on the treatments. It’s just that fear of the unknown that is really getting to me right now.

To anyone who is reading this, thanks for listening I’m hoping it will help to share my experience and to hear about yours.

[ibuzz]

I took my first Copaxone injection today and I'm happy to say it went very well. It did feel strange, kind of like a stinging/burning sensation pretty deep under the skin, but it was completely gone after about an hour. There was some redness around the injection site but that also went away after an hour or so. Hopefully it will continue to be that easy! The nurse gave me an autoject and showed me how to use it, but I decided to do it manually. Needles don't bother me and I didn't like the idea of not being able to see what was happening as I injected the medicine. The needle didn't hurt a bit and it really was a piece of cake. I feel relieved Thanks again for all the support everyone! It makes me feel so much better to know I'm not alone in this, and it really helps to read all of your posts.

[zena]

I think I have ms , what do you think ??

Hi,

My name is Zena 46 always been healthy not even a cold, don't smoke not a drinker work out weekly . It all started March 1, 2010. Started my Monday at work processing 1st of the month checks around 10:00. I started feeling my left arm getting tight and my left side of my chest . I called my husband and he suggested we go see the doc make sure all ok. So we did they ran the heart test and said yes something going on..Sent me to the hospital for more test.

Well my blood test came back showing I had a small heart attack. Kept me for 2 days in the hospital running test. The last test was the dye test , test all came back good nothing ...So the doc said well must of been a spasm in your artery . Gave me baby aspirn and sent me home.

On April 2 I had a TIA small stroke lasted less than 15 minutes. Went back to the hospital they did ct scan more blood test..nothing found nothing. So sent me home upped my baby aspirn to adult dose. Told me to check in with my primary doc and see a neor doc. So I did, saw a nero doc and nero found nothing wrong with me , so said lets do a mri . The Mri came back with two marks on it...they say it was from the TIA . But the tech had wrote maybe ms ?? I also did a neck scan found nothing, saw a eye doc found nothing. My card doc requested a scan to see behind my heart , that they found that I have a pfo which is a hole in the heart . So now I am scheduled to see doc over at UCLA to get the hole fixed. But I have been having these symptoms like numbing and tiggling mostly on my right side. The last two weeks I have been feeling pain in my right side shoulder when i take a deep breath and this comes and goes. I have felt numbing in my ears and center of my face. I even had eco in my ears and buzzing noise.
Every day I have some kind of symptoms not sure whats next. So my primary doc put me on lorazepam 0.5 mg to help relax my muscels they do seem to help. but the symptoms don't go away. I also feel pain in my right leg when sitting to long. So this is where I am at because of these symtpoms dont go away, I have to think it must be ms. They tell me that I had the TIA due to the PFO in my heart. But what caused the heart spasm ??? Was it ms ??

I plan on seeing the neor doc and maybe do another mri to see if new marks on my brain ???

Thanks for listing