Yes, unfortunately Dr. Herbert confirmed the diagnosis of MS. I took my first Avonex injection today. It's making me very tired.

Christine, how are you doing on the Restasis?

Kay, glad to hear from you! I was hoping that your absence from the boards meant that you were doing better, but I guess not. :(

I'm glad that you finally have insurance! I, on the other hand, am having major insurance problems. I aged out of my father's insurance, and now all the other insurance has very limited prescription plans. So I got one that has a better prescription plan but doesn't pay for doctor visits. I can swing the doctor visits, but the prescriptions are going to kill me. There is no way I can pay for my medications. I may end up going on medicaid because my Avonex is so expensive that even with the better prescription plan I can only get it up until March. :( It is $1200 a month (one injection a week!)

You most likely don't have MS. But, I have to tell you that extreme fatigue is a symptom. I the fatigue myself, and let me tell you, it isn't fun! It can't hurt for you to get an MRI if you are having numbness, etc... They will only diagnose MS however, if you have two or more attacks. An attack would be optic neuritis for any period of time, unsteady balance, or numbness that lasts for more than 72 hours. But it can't hurt to get an MRI of the brain. Have you checked out the MS board?

My eyes have been just awful lately. I mean really awful. I have had to greatly decrease the steroids and I am suffering so much because of that. I need it so badly but I can't have it.

On monday I went to the eye dr for a regular checkup. He found something that he has never seen in me before. He found a piece of mucus that was stuck to my cornea. My left eye was so dry that the cornea was "sticky". When the cornea gets like that, the mucus sticks to the punctate erosions (teeny holes) in the cornea. It's almost like it grows out of the erosions. That indicates a very advanced stage of the dry eye disease.
:( It has to be surgically removed from the cornea because it sticks to it and can obstruct vision and cause pain. Mine was causing pain/irritation. But the only problem is that when it is removed, it leaves a microscopic hole in the corneal epithelium, because when it is removed it pulls off a piece of the cornea. So, it's almost as if you have an abrasion in your eye. In fact, it's called a micro-abrasion. So I had to be on anti-biotic drops until today. I saw my doctor today because it didn't feel any better. But he said it was healed and that the drops were just irritating me. Also, a side affect of the drops is that it makes your eye(s) dilate. It did that to me, and he noticed it right away. So I am done with the anti-biotic now, but the eye is still bothering me a lot. I cannot wait to get down to Maryland on monday and see Dr. O'Brien.

Elyse,

I am so sorry to hear that your eyes are causing you so much grief (what else is new!). I cannot believe what you are going through and I can only sympathise and tell you that you are so much stronger than I could ever be, even at 35 years of age. I definately know that I would not have ben able to handle even a little of what you have been through at such a young age. I sincerely hope that Dr O'Brien can come up with a new idea. My eye doctor told me that he has done some clinical trials on a new eye cream which contains male hormones. If it is anything like restasis, it will be available in the US before Australia, I am sure. Maybe Dr O'Brien may be able to shed some more light on what it is and when it may become available. It might be another option anyway.

I cannot believe how much the Avonex costs. How is the average person expected to pay for all these expensive medications? It is really unfair that it is not subsidised by the government to reduce the burden on people that are reliant on it to control their symptoms. How did you cope with giving yourself the injection? I know that when I first had to use eyedrops and clean my eyelids, I found it very awkward, but over time, it has become so much easier and almot second nature with so much practice. I am sure it will be the same with your injections. Have you had a spinal tap? If not, how was the diagnosis confirmed and can they tell what form the MS will take (I believe there are 4 different types).

I went to see a neurologist, when my MRI showed the brain lesions and he said that they did not appear to be the same type of lesions as MS lesions. He also did a stack of tests on me like reflexes, balance, co-ordination and I managed to pass these. He also said that he would show the best radiolosit in Australia, my MRI scan and he confirmed that I did not have anything to worry about. But sometimes, you d still wonder if the got it wrong.

The restasis does seem to be making a minor difference to my eyes, especially the right one. They stil feel dry at times and my eyelids still look red. I have been on the drops for about 4 weeks now and hope that it gets better. My left eye is still worse than my right. I am seeing my eye doctor on 20th Jan, and I am sure I will have a schirmers tests then (yuk).

I also stopped taking the doxy after speaking to my family doctor as I am sure, it was contributing to my throat irritation and lump sensation. The doctor has referred me to the gastro specialist, so I may have to have an endoscopy to see why I am having acid reflux etc. More tests....they seem to be neer ending.

Kay, good to hear from you . Sorry to hear that you have also been feeling so bad. Hope things improve soon.
Christine

Christine,
I am glad to hear that you think the Restasis may be helping you. Keep in mind that it may take up to 6 months to achieve its full potential. I absolutely hate getting schirmer tests. Neither my regular eye doctor nor Dr. O'Brien do them on me. My problem is not so much with the amount of tears, but more with the quality.

Kay, good to hear from you again! I was wondering what happened to you!

My eyes have been just awful lately. My left eye is really really bad. It is bothering me terribly. It has been red and itchy and a little puffy today. If it is still like that when I wake up in the morning I may go for a quick checkup at the eye doctor, because I'm concerned about pink eye and tomorrow is New Year's Eve, so nobody will be in the office until probably friday.

I absolutely cannot wait to go lay down with a nice cold compress tonight.

I saw Dr. O'Brien on December 22nd. He agreed that my eyes look just awful. He said they are not quite as awful as they were in January, but still awful. He agrees that I cannot use Restasis.

It is interesting that you should mention a hormone drop. Dr. O'Brien said that there are two new drops coming out in the spring. One is called Diquafosol. It is supposed to affect the mucin layer of the tears, therefore helping people with poor tear quality. The other one is an androgen drop, that contains hormones. I will return to Dr. O'Brien in the spring, probably around March or April, and we will decide then which of these drops will benefit me the most. (hopefully both will be available by then.) Dr. O'Brien will help my doctor and I decide what to use, and then my Dr. will do the follow up.

In the meantime, I am absolutely miserable. I feel like my eyes can't get any drier than they are right now. They are unbelievably itchy. Dr. O'Brien is allowing me to use the dexamethasone (steroid) ointment twice a week at bedtime. He wants to see what minimal use will do. He's hoping it will keep my inflammation at bay so that I can function, but not make my intra-ocular pressure go up.

I did not have too many bad side effects from the Avonex. I didn't have a problem injecting myself, once the nurse showed me how. It's easy. The sight of that huge needle freaks me out, but I'm getting used to it!

The good news is that I applied for new insurance this week. For right now I have insurance that I have to pay for, and it is not that good. It does not cover doctore visits, and it only covers up to $5000 in prescriptions each year (which considering the cost of Avonex, would only take me until about April!). I went over to one of the local hospitals and they had a woman there from HealthFirst. HealthFirst is free insurance for people who are still students and don't make enough money and cannot afford to pay for decent health insurance. It covers EVERYTHING with no copayments and unlimited prescription coverage. It is subsidized by the government. But the bad thing is that not every doctor accepts it. I don't think my eye doctor does, and I am not about to stop going to him. So I'll pay him out of pocket (if he'll allow me to pay him at all!) They are 99% sure that I will be able to get this insurance. At least I won't have to worry about that anymore.

I'm so mad right now though. I went out yesterday and I lost the make-up case that I use to carry my eyedrops. It had a few vials of tears in it, which is really nothing. But it had a brand new bottle of gel drops, worth about $15, and an almost full bottle of Betimol drops, worth a lot more than $15!!!! It also had my mirror in it and a little notebook. I searched both cars and even called the TGIFridays Restaurant that we went to and asked if anyone found it. I'll have to search the cars again tomorrow and double check all the rooms in the house, but I think it's gone. Luckily though, I have another bottle of gel drops, which is all I really cared about anyway!!!

On that note, I think I will go put in some of those gel drops!!

Happy new year everyone!!!! Lets all be healthier in 2004!!!! :bouncing: