Newly diagnosed, about to start meds

[dtaylor1101]

I was just officially diagnosed with MS yesterday. I had optic neuritis and on my 1st MRI, 1 brain lesion. My 2nd brain MRI came back clear as well as my cervical spine MRI.

My diagnosing factor was my lumbar puncture. I have 8 bands in my CSF. I currently have no symptoms. Occasionally extreme heat or cold will cause my eye to become blurry and I have a little pain. Stress also makes this happen.

I guess I am fortunate that I was able to be diagnosed early on. I am meeting with my MS specialist on Tuesday to discuss treatment. He feels that whether they call it Pre-MS or MS, we should take preventative measures.

If anyone has a similar experience, (no current symptoms, early intervention) I would like to hear them. Also, what medications did you start off with?

Thanks!

[foolintherain]

I was diagnosed in June with Clinically Isolated Syndrome. I too had optic neuritis as well as transverse myelitis. My neuro believed I had a very good chance of developing MS, so wanted me on meds. He said early intervention is really important, and I couldn't argue with him. I am taking Avonex and have done very well on it. I currently have no symptoms, and clear brain MRIs, with some lesions on my cervical spine. So, it is definitely strange taking such heavy duty meds with no definite diagnosis and no symptoms! Good luck with your decision.

[BigA]

You are very lucky indeed. I would have 3 years on my disease if my doctor had correctly diagnosed Optic Neuritis when I came to him complaining that one eye was dimmer than the other.

I'll start by saying that you should make sure your vitamin D levels are high, not ok, not normal, but high, at least 50. I'd advise you try Interferon, since it's been proven very well in these cases, but it's an SOB to take. Avonex is one shot per week, but it's hell for one day. Copaxone is the easiest, but it can cause site reactions and you have to have a shot every day. I'd avoid Gelinya, since it's an actual immune-suppressant, as opposed to the Interferons, which are Immune-modulator - not as strong. It's a bit of a tough spot, but you're starting out the right way to realize that you have a jump on the disease. Good Luck.

[Marco]

There is Radiological Isolated Syndrome (RIS) where they have scientific evidence (labs, MRI, etc.) that point to MS, but no symptoms. There is Clinically Isolated Syndrome (CIS) where there has been one documented episode. Early treatment may significantly delay the second clinical attack and the onset of full-blown MS. Individuals who experience a CIS may or may not go on to develop multiple sclerosis. Patients that receive disease-modifying therapies are less likely to progress to full-blown MS than patients that go untreated. Here is the link to CIS from the National Multiple Sclerosis Society: http://www.nationalmssociety.org/abo...cis/index.aspx

If I could go back in time I would have started a MS drug as soon as possible. Now with even more medication choices it's easier than ever to begin treatment. Besides medication you should review your insurance (life, disability, health) options, your diet, vitamins, supplements, exercise and stress management activities. This may also change what job opportunities you pursue where a good disability package is worth far more than a few dollars each paycheck. Hopefully, you'll never need it, but if you ever did you'll be more than thankful it's there.

Don't overwhelm yourself -- take it one day at a time and look at one thing at a time. Right now, I would focus on disease basics and the medication options. Next month, maybe review your blood work for any deficiencies. April could be diet month. May review your stress management situation, etc. Ideally, you make small modifications now that will have long-term benefits in the future. It's not possible to know and change everything today -- so take it in smaller chunks and don't forget to count your blessings along the way. I wish you well ...

[abeautifullife]

I was dx a year ago yesterday and currently am asymptomatic. My doctor says that I have an "incredibly mild" case of MS and that we caught it early. I take Rebif, an interferon, and haven't had problems with the medicine at all. I feel great For the record, I have more lesions than you do, and I'm still AOK. Best wishes!

[Shebjo]

I was just officially diagnosed with MS yesterday. I had optic neuritis and on my 1st MRI, 1 brain lesion. My 2nd brain MRI came back clear as well as my cervical spine MRI.

My diagnosing factor was my lumbar puncture. I have 8 bands in my CSF. I currently have no symptoms. Occasionally extreme heat or cold will cause my eye to become blurry and I have a little pain. Stress also makes this happen.

I guess I am fortunate that I was able to be diagnosed early on. I am meeting with my MS specialist on Tuesday to discuss treatment. He feels that whether they call it Pre-MS or MS, we should take preventative measures.

If anyone has a similar experience, (no current symptoms, early intervention) I would like to hear them. Also, what medications did you start off with?

Thanks!

Hi. Nice meeting you. I am the mom of twin girls (age 11) and one twin was diagnosed in Nov 2013 as having CIS with high risk of developing MS.

Back in April 2013 - she had double vision and MRI showed 1 lesion in cerebellum area and she was hospitalized for 1 week. That is when they said she had CIS. She had 2 other MRIs (in May and Aug) - and no additional lesions and in fact the 1 lesion got smaller but then the next brain MRI in Nov 2013, showed a 2nd lesion - and so she got the diagnosis of CIS with high risk of getting MS.

Her double vision is almost gone (she wears a peel on prism on her right eye glass lens) . And she has not exhibited any other symptoms. Dr started her on avonex - and her dr. said they treat high risk of getting MS same as actually having MS. She has been taking avonex since mid- December 2013. Luckily, no major side effects ... She has had a few headaches ( but Advil helped) and she complained a little of muscle aches but nothing has last longer than a couple of hours.

So I am hopeful that her starting avonex early is beneficial . Like I said - she isn't exhibiting any symptoms and is doing excellent at school. I hope that continues . And it looks like you and my daughter may be in same boat - possibility of getting MS but not having any current symptoms and hoping early intervention is the key especially with taking avonex. Let us know how your dr. Visit hoes and what medication is prescribed.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[dtaylor1101]

Thanks so much for all of your replies. It is comforting to see others that are on meds but don't really have any symptoms. It's hard to imagine myself on these meds when I don't feel sick.

Marco - Thanks for your advice. I have already priced out the meds through my insurance to help with the selection of one. Boy are they expensive!. I also take a vitamin d supplement as I am deficient in it.

I have had every test done under the sun to rule out other disease possibilities.

Again, thanks so much!

[Cindybridgeman]

Hi dtaylor,

I too was diagnosed very early, since I have 1 brain lesion and 1 cervical lesion and have had only 1 discernible flare. I was diagnosed in November after numbness in my side and leg for two months, which has now resolved. I have more than 5 CSF bands in my spinal fluid, hence the dx of MS.

I started Tecfidera in December and aside from a couple of episodes of flushing early on, I haven't had any side effects from the med. I am symptomless, and just had an appointment with my MS doc where he told me my latest MRI has showed no change from the last six months

I feel great. I feel very fortunate and blessed to have the dx since it appears that it takes a long time for some to be diagnosed. I work and travel for business quite a bit, and have had no issues thus far.

The comments about vitamin D are good; I was low (16) and so my doc prescribed vitamin D to get my levels back up.

Good luck to you and I hope a continued symptom-free experience for you!