Newby

[RobinLH]

Hi, I am new to MS, sort of.  I had optic neuritis 4 years ago (Iritis).  Little things since then, mostly tired all the time.  I have had many MRI's each showing growth in size and number of lesions.  I was finally dx Aug. 2013.  I was put on Rebif for 6 months, and when I had another MRI, it showed significant growth in size and number of lesions.  The only thing I really noticed was I was forgetting words and names.  Very frustrating and a little embarrassing.  My family is not sure what to do with me, I don't have any lesions on my spine, but having a little trouble with balance. To look at me you would never know I had MS as most people with this disease.  I am now on Gabapentin and Tysabri.    I am a little scared about my future, but trusting God knows what is right for me.  Is anyone out there taking Tysabri and what is your experience?  I've had 2 infusions, the first one no reaction.  The second I was sick for 2 days, which is better than being sick all the time on Rebif. Please and Thank you!

[CheyTag]

I've had two abnormal VEPs and that makes the neuro AND neuro-opthamologist very curious...
I just want to know so I can get help... The stupid eye pain, vertigo, leg/arm weakness, and (the worst part IMO) the severe exhaustion... Have returned...

[CheyTag]

Hi Kyle:)
Ya leave it to me to be a paradox lol

[kwarendorf]

CT -  Sounds like you are the "all sqaures are rectangles, but not all rectangles are squares" paradox :-)

In this case MS is the rectangle and HM is the square. Most HM symptoms can be caused by MS, but not all MS symptoms can be caused by HM. That the HM treatments aren't working would make me consider other possibilities as well.

Kyle

[CheyTag]

Hi Kyle... We aren't dismissing the HM DX but rather questioning if there is an added DX... The neuro-opthamologist is the one questioning the HM DX due to the severe vertigo lasting more than a month with tx... Also, I guess BC all the HM tx I have taken hasn't done much to help/prevent... Seem to be getting worse...
Thanks for asking:) Hope you are well:)

[Lulu54]

Welcome, Robin.  Sorry it took you four + years to get answers and start treatment.  I hope the Tysabri is good for you.  There are quite a few of us here on Tysabri, including me.

I am also among the walking wounded and often don't look like i am sick with a chronic disease.

I wouldn't be so quick to blame the Tysabri on feeling bad- perhaps it overlapped you having something else wrong? It does take a few months for it to kick in and start doing its magic, and you should feel a difference in another month or two.

be sure to come back around with your questions and comments.

laura

[kwarendorf]

Hi Robin - Welcome to the group.

I'm also in the "To see me on the street..." category. Many of my symptoms are invisible to the outside world :-) Following my DX 2 1/2 years ago I went right on Tysabri. I had 20 infusions before I converted to JCV + and the Tysabri stopped working. While I was on it I had no ill effects of any kind.

@CheyTag - Was there ever any reason to dismiss the hemiplegic migraine dx? From what little I know it could account for your symptoms.

Kyle

[CheyTag]

Hi Robin... thanks so much for replying:) so did the neuro-opthamologist dx you with MS?? My paper from my last VEP said optic neuritis under dx but they didn't tell me that at the time. I was sent there because I had an abnormal VEP while I was in the hospital for both my legs not working in Feb. After having eye pain first. Then in May they redid the VEP at a different hospital (the one my neuro is at) and it was "normal". But thursday the Neuro-opthamologist did another one and it was abnormal and worse than the first. He is just waiting to see my MRI but I know it is normal from the report. I don't know what to think except that you are right... this is going to be a LONG PROCESS. I believe I'm in the very early stages of ms and my grey matter is being effected. My very first attack was oct 2011 I had "STROKE-LIKE" symptoms... but I was dx with Hemiplegic Migraines. I will pray for you:)
-Chey

[RobinLH]

Hi Chey,  I did have some lesions, but they thought they were caused by migraines.  So they gave me meds for the headaches.  Only the headaches went away after 1 year of meds, I quit taking the meds and still no headaches.  It is a long road to get a diagnosed.  At times I felt like a hypochondriac, and at other times I'd tell myself I am not and these are real symptoms.  I had no injury to my eye.  I still have pain in my eye when I get a ordinary headaches.  I hope you find answers too!  May God bless you and keep you close!

[CheyTag]

Hi Robin welcome:) I don't have much info on the DMD's as I am in limboland, but I'm currently in the dx phase of optic neuritis. .. can you tell me if you had lesions when you initially had ON dx? I appreciate you tellung me some info and I hope you find the answers you seek:)