Is there hope?

[johnsprincess]

Hi, I am new here and don't really know where to start. In May I had Optic Neuritis, my MRI was MS suspicious, and did 3 days of IV steroids and 3 weeks of oral. That did not go well at all for me. I waited 3 months to see a Neurologist and was then told to go to someone else. I finally saw the right Neurologist in September, another MRI, 1 active spot on my brain none on my spine, and was told that I am not diagnosed, because you need two episodes to be clinically diagnosed but I should just tell people I have MS.

I am very angry and am still processing. I did Rebif for 1 month, again didn't go well for me and am now in the process of starting Tysabri. Looking for some hope and some support. I am a private person and this is hard for me to put myself out there. Looking forward to meeting some of you soon.

[Ami]

Yes there is hope!

Hi John,
Thanks for sharing your experience. I am learning so much from what other people go through in a dx, some similar and different from my own experience. I do not have a clinically certain diagnosis either, but it is clinically probable. However, I have seen 3 neuros and they all say they are certain I have MS. I trust my neuro and she said, "You have MS and need to accept that" even though it's not "certain". You can have a clinically certain diagnosis without a second episode. You have to meet enough of the clinical criteria (forget the name of it...), for example, I am missing 1 piece of data. I have lesions on my spine and brain (presents classic for MS), had 1 episode, and other symptoms. If I got a LP and it is positive then it would be certain with that additional criteria. However, I don't need that certainty right now because my neuro assured me there is nothing else to diagnose with what I present.
What I am trying to say is that you need to accept the diagnosis, even without "certainty". There have been people misdiagnosed with MS so you have to assess your confidence in your doctor. My neuro studied at UCLA and explained how they reviewed many poor diagnoses of MS, based upon insufficient data.
Anyway, no person or MS is the same. Just proceed with what feels right for you. Get any extra assure you need and can get. Sometimes it's just waiting because of the uncertainty of the disease. We are partially helpless to this disease but we can also take control of what we can. We can't predict the future but we can make positive changes to help make a positive future. A positive attitude is essential. Smile

[seeuinct]

Hang in there...

I had one neuro tell me "it is not MS yet, but you will probably get MS due to the o-bands in your spinal fluid...."

Then I went to another neuro who said "yes you have MS time to start treating it".

Since it is such a difficult disease to pinpoint in some of us, one neuro could say you have it and the other could look at the same sx and say no you don't. The neuro's both told me this themselves!

The point I am making is, you know something is going on. Hopefully if you are proactive about treating it then you can manage it better.

In the end it was a hurry up and wait game for me too. Wait for tests, wait to take tests, wait for appointments, wait for dr's to talk to each other, wait for medical secretaries to call back. It really makes you feel out of control- not to mention the crazy symptoms you have to cope with too.

Maybe if you are on a treatment program then you can feel like you have some control of what is happening. ANd studies show that starting the meds early is a good thing.

Good luck to you- all the best!

[LIMBO72]

Hi Johnsprincess.

Like you, my first symptom was ON. That combined with vertigo had my GP thinking it was Benign Paroxysmal Positional Vertigo, but he sent me for an MRI just to ba safe. That only took a month to get in, but I missed three weeks of work, since I couldn't stand up or sit up straight without throwing up or walking into things.

Needless to say, this was a very frustrating time. When the doc called me in for the results, his words were "possible MS" I had no idea what MS really was and went straight home to the computer and good ol' Google. Then came the long wait to see a Neuro. I actually consider myself lucky since the whole process of the DX took about nine months. Some people, it takes years.

My advice would be do your research and follow your Neurologist's advice. If they suggest starting treatment, look into the different options and what work best for your lifestyle.

It's all scary and frustrating, but hang in there. You will get lots of advice and moral support here.

[johnsprincess]

Thank You

Thank you Ami, Limbo72, and Seeuinct for sharing and your support. I am glad to know I am not the only who has felt the hurry up and wait syndrome. I've thought a lot about all you have said and I have to agree with you that even though I am doing what my neuro has ordered, I am just going through the motions and not really accepting the reality of the situation because of the certainty issue. I need to find that acceptance and soon so I can do my research and take control of what I can.
Again, thank you to you all

If you're going through hell, keep going. - Winston Churchill

[Jenwi]

New here,

I was diagnosed in Aug 2011. It been a roller coaster for me, and my family I have to say. I"m currently on Rebif, don't know if it working. I have had some flares during being on Rebif. I was diagnosed with depression before I was diagnosed with MS.

This week just been very emotional. Sunday everything gone down hill, I went out shopping with a friend--we just started, well I started having irregular heart beat, just didn't feel well. Came home lay down, got better after 3 hrs. But I been dealing with chest pains, my right shoulder pain. I feel blah, tired, stiffness. Now it Tuesday I woke up to hard to walk. I see my neurologist tomorrow Wednesday. I'm trying to avoid ER, medical bills adding up.

I'm very frustrated why they can't do steroids at home...........
I did see my primary dr yesterday, she like it all new to me and it takes time for medicine to work....
I'm a very impatient, I like to be on the go.... I have three kids I can't let MS take me down......
Help here
Jen

[hunterd]

Hi, I am new here and don't really know where to start. In May I had Optic Neuritist, my MRI was MS suspious, and did 3 days of IV steriods and 3 weeks of oral. That did not go well at all for me. I waited 3 months to see a Neurologist and was then told to go to someone else. I finally saw the right Neurologist in September, another MRI, 1 active spot on my brain none on my spine, and was told that I am not diagnosed, because you need two episodes to be clinically diagnosed but I should just tell people I have MS. I am very angry and am still processing. I did Rebif for 1 month, again didn't go well for me and am now in the process of starting Tysabri. Looking for some hope and some support. I am a private person and this is hard for me to put myself outhere. Looking forward to meeting some of you soon.

WELCOME JOHNSPRINCESS!!! great to have you here! i`m sorry for all the issues you are having.
it must be hard for a private person to share all these details, thank you for doing so. with so many ms people here, your feelings and issues are shared by others. any time you have have questions or comments, they are welcome here. good luck.

[twisterred]

Welcome JP,

Welcome. I wish we were meeting in another place, but just know that everyone here wants to help and support others.

Can you recall any other other odd occurrence that might be considered a flare in your past?

If so, tell your DR. It will help them help you.

I understand being a private person. Publicly sharing one's medical history isn't normal for me either.

The early treatments you have been given is great, forward thinking. I hope it helps you, even if all of this is strange and new.

Welcome to a safe, good place.