Hi, Everybody. I have new and scary symptoms

[mtbargeman]

Hey, Yall.

Some of yall remember me from other boards, I'm sure (Hi, Mikey!!) I haven't been here for a long time, tho.

I have a visual evoked response test coming up in a week. They are looking at my optic nerves to see if I nave a neuropathy or a neuritis. My problem is, that both terms have been used interchangeably-Neuritis at one optho. visit, and Neuropathy at another. My neurologist has ordered the tests, since his chair was apparently thinnest when I started to lite fires under butts.

Anyhow, I have increasing spots every day, my vision has been noticeably dim for months, and truthfully, I'm scared. Either way, I'm getting a biologic med like Remicade or something after the neuro sees the test, no matter what it turns up, he will send a letter and recommend one to the Rhuemy. HE said so. The optho says its time to try other things now to save my vision, too, and put me on B-complex and B-12 vitamins from the drugstore. I took them for a bit, but they made me nauseous, and my kidneys hurt, too, after a week or two. I found a strong enough magnifier to read the labels, and there were hundreds of percent values OVER the RDA- 2500% of this, 3333% of that, and my urine was fluorescent yellow. I quit taking them. There is such a thing as too much of a good thing. Man alive. What next? I am starting to think I should make the choice of doing one of two things- A, give up and let the disease take its path (not an option. I have OID, OID does not have me.) or, find a way to Baltimore to see Dr. Nguyen. I am so hoping Mike will have a chance to weigh in on this, and if any of you out there have had this test, and don't mind sharing your story with me, I'd be ever so glad to read it.

Love Everybody,

Mary

[Mike Bartolatz]

Hi Mary and wecome back to the site!
the biological modifiers such as remicade or humira might be appropriate, don't let the rheumy give you enbrel as it WILL NOT work for your UVEITIS and perhaps have no benefit for the Neuritis/neuropthay either.
often chlormabucil is used to treat CNS stuff related to the likes of Lupus, very powerful and I can't recall if kidneys need to be A1 shape for use of it.
IvIG might be appropriate becaues of your kindey issues.

Humira in my LAY opinion would be a worthwhile try since it is made with HUMAN cells to make it unlike Remicade. Humira is also injected so you could take it at home. if you keep it in the Refrigerator and get it pretty cold, it won't sting/burn as bad as if it is warm.
I know someone on it but don't want her here at this site as she has burnt one to many bridges with me. if you see me tell someone not to be here you will know why. You know me well and know that it takes one hell of allot to tell people to buzz off.

so I hope others will post to you soon even if it is only to give compassion and moral support. your battle to save your sight, hearing, marriage and raise your kids has been a very remarkable achievement. Please know that I''ll do all I can to help from afar.

Take care my friend and once again, WELCOME back!

Mike Bartolatz

[mtbargeman]

Mike-

I am glad to be in a place where BS does NOT reign. I can find my own pile of doo-doo, thanks. I can find my own info, too, if need be. I found you, right? Would you like the OID article I published for this site? If so, you are more than welcome to it. If you don't feel its needed, then don't- I don't get offended easily at all, unless I see actual injustice. That and I have no tolerance for stupidity. Ignorance can be fixed. Refusal to fix ignorance falls under the category of stupid.

AJ says hey, and may God smile on you, for you have been a life-saver. And a friend.

Mary

[Mike Bartolatz]

That comment sent chills from my toes to the top of my head!

thanks for realizing the BS at SWF. It is still going on. the cover up is actually ammusing if it didn't happen to me. they don't realize that they could be sued in Federal Court for Discrimination by Linda's comment in the series of emails that they said "is against their rules to post". how else can you challenge them but they exist on my computer in my email with the computer address of Linda a Moderator there.

I think your article is posted her somewhere if I recall correctly but you are more than welcome to subimit it to the Related condtions section of the site and I'll put it in a sticky note once you put it up for people to read.

anyone can post reference material to any of the forums here. I don't own this site, I moderate all of the Forums for Kevin the administrator and Owner.

the one understanding is that if I FEEL IT IS NOT TOP NOTCH< I WILL REMOVE IT.
you are aware of how I feel about MODERN treatment and I will not tolerate information that espouses a corticosteroid only means of treatment. I will not allow any drug or other substance that has not had scientific scrutiny by MEDICAL professionals of Doctor status preferrably FDA approvoved and at least on the ORPHAN drug list.
supplements have to be reviewd for effacacy ie Vitamin D3, B vitamins, other supplements as used to treat Dry eyes and macular Degeneration. I know that you are aware of this but since we are talking about it others who are new here will understand this.

I hope the Easter Bunny could afford some eggs and chocolate for the kids.

God Bless my Friends there in Virginia,

you will help others here I am sure Mary in your ability to communicate through written word. you might mention that you are basically deaf for our members and discuss a bit about your possible BAHA implant soon.

Mike Bartolatz

[mtbargeman]

Mike-

I deleted my account there at SWF, as I refuse to go against my own beliefs and harm another. To stay there, knowing what was done and how they felt about certain alternatives, would have introduced a draining, negative force to my life that I was not willing to take on.

As far as my article, I will be glad to put it up for others to read. I have one or two more, as well, that I feel may be helpful. One is entitled, Chronic Illness and the Family, and it discusses the greiving process we go through when we learn we have something that is or can be so devastating, and how it will affect not only us, but our families, too. They greive for us, as we grieve for ourselves. It took a long time for me to realise what was going on in that aspect, and I almost lost my marriage because of it, but we stuck it out, we realized what was happening, and came out the better for it. Now, there isn't anyplace my husband isn't willing to go, my kids aren't embarrassed, and they understand that when I'm having a fuzzed-out day, or I'm hurting, or whatever, that it isn't their fault, or mine. It just is, and we get through it as a family.

The other is about Depression,and the fact that it is far more than just sadness in its symptom presentation. I will put the links to all three up: Remember, YOU are the Moderator. If what I post when I've written something that I THINK may be appropriate, is actually inappropriate- for this board, then by all means, remove it. I will not be offended if you don't feel it is a helpful link, or if the topic has already been covered. I don't play that way- I'm too old for the sandbox, and never liked trying to get the sand out of my shorts, anyway.

That said, yes, The Bunny is a Mercenary old Rabbit, but we've managed to cross his palms with silver, so the children will have a nice Easter. Us Mommy types have our ways.

I will look up those links and post them tomorrow. For now, it has been a long week. As I recall, I brought Chris home from the Hospital Easter week, 1999. That one was busy, too, but I don't remember where 9 whole years have gone. He is growing up so fast. He's so sweet, and never has a bad word for anybody. He sasses back now and then- all kids do- but he never has anything bad to say about anybody, and he is the least judgemental child I have ever met at his age. I am so proud of him, and who he is becoming. Now, if I could just manage a few more table manners, he'd be perfect. But that might not be near so fun.

Hope the Easter Bunny pays your grandbabies a huge visit, and leaves you a sugar-free chocolate rabbit. Or two.

((((((MIKE)))))
Mary

[Rev K]

Hi Mary,

Sorry to hear you going through something so scary. I'm so glad your husband and kids are there with understanding and compassion.

I'll write more later...I'm just so sick to my stomach tonight...been pacing and sipping water for several hours now (something I always do when my stomach's sick).

Hi Mike,

Glad you're here and moderating this site !

Talk more later,
Kathryn

[Mike Bartolatz]

mary,
put those articles in the appropriate forums. I indicated what content is appropriate and what is not and I have no worry that your articles will be on target. messages can be over and over again but from a different point of view and one small snipet can change or help people get through an event. my tone is mechanical in nature, yours is more free flowing so we should complement one another. the goal is the same, save sight, hearing. or what ever else is going on.

Take care,
Mike

[Mike Bartolatz]

http://www.abbott.com/global/url/pressR ... e_0579.htm

Mary,
above is the latest information on indication of use for Humira. Please note that it is best used with Methotrexate vs a stand alone drug. this is similar to what occurs with Remicade when used to treat JIA and uveitis as well as some forms of adult uveitis especially related ot the variious forms of HLA B27 disease from what I have read.

you should be able to blow up this article so that you can read it.

wish you the very best,
Mike

[mtbargeman]

THATNK YOU!!!!

[tomcat0864]

Hi Mary, I am so sorry you are experiencing these new symptoms and hope you can get some answers about what is going on with your eyes.

You asked if anyone has had experience with evoked potentials, and I have had the test done about 4 times in my life, for my eyes, and other parts of my body. The one for your eyes is a bit tiring, but not very invasive. They put electrodes on your head and face, then you look at a screen tha displays different patterns, and the respose that is sent to your brain by your optic nerve is recorded.

I have had optic neuritis many times, and it, or something very like it, has taken out much of my peripheral vision in the last year. I have also had some dimness in my vision the last 6 months or so, but have declined another VEP. I see a neuro-optho, and he has told me there is nothing that will help the kind of neuropathies I am experiencing. Since there is nothing they can do, I see no point in a test that will only confirm what they already know and that have come back positive in the past.

From what I know and have been told, neuropathies are disturbances of some kind involving the nerves, such as the opric nerve or other nerves found in the eye, and neuritis is the actual inflammation of a nerve, thus the ending "itis".

It is all very frustrating to say the least, especially when other eye issues such as uveitis and glaucoma are finally under control for the first time in 13 years. Humira has been a godsend to me, and I cannot say enough good things about it. I wish it had been available sooner, I could have saved myself having to undergo some less desireable treatments like IV Cytoxan and IVIG.

Remicade has worked wonders for my sister, but I could not even start it because I cannot tolerate even 5mg of mtx. With Humira you do not have to take mtx because you do not make antibodies against the ones used in the biologic like many people do with the mouse antibodies found in Remicade.

Some people do take it with Humira, I do not know of any myself, but I believe it is so that hopefully the immune system can be retrained in a couple of years, which is not the case as of yet with the biologics. I have not read any literature about this, it is just what I was told by someone who is taking Remicade, so I may not have all the facts right.

I don't find it stings very much, just a bit, and it is over in about 10 seconds. The hardest part for me is trying to get all the bubbles out of the syringe without pushing too much of the clear product out with them. I tried once to take it out of the fridge before I injected because I read that it stings less when it is brought to room temperature on the "Ask Dr. Foster Forum". The only problem with that is, I forgot I took it out of the fridge, and almost forgot to inject it. I have also left it in my purse after picking it up at the pharmacy, and once had to make a frantic call to the company that distributes it to make sure I hadn't ruined it because it had not been refridgerated for 14 hours. You can imagine how crazy with worry I was thinking I would have to rhrow away $1,500 worth of medication! They told me it could be left at room temperature for up to 24 hours - PHEW!

Usually they give it to me with an ice pack at the pharmacy, but they were all out of them that day. Usually I move it to the top shelf of the fridge the day before I need to take it (I take it every week) so I don't forget. I am going to do some travelling, and am not sure how I will manage to transport it then store it unless I have a fridge in my hotel room. It is a bit of a pain to have to keep it cold all the time, but still easier than going for an infusion in my opinion.

I hope I have been some help to you. I just thought of this, if you are still having problems with seizures, you may want to ask about taking your medication because the patterns you have to look at can invoke a seizure if I remember correctly.

Just let me know if you need any more information. I hope you are able to find an effective way to deal with all this very soon, you have had more than your share and really deserve a break!

Take care, Cathy[/b]

[mtbargeman]

Thanks, Cathy. Good info. I hate mtx anyway- gladly will stop it.

MAry