After a three year journey, I've come home for good.

[Middlesista]

Constipation - do u take a stool softner or Miralax- keep those bowels moving !!!

The sooner u start the treatment the better for getting that vision improved

[debra]

Sister in the middle, hi! I keep hearing about the weird taste in the mouth issue,and I'm sure meds cause this as well,but interestingly I had this bad and no meds. It was so horrible for the first year and a half or so,that I was sucking blow pops all day. Anything with a stick,was in my mouth. Why lollipops, who knows. Maybe I was afraid I'd choke,cause so many bizzar things were happening! Still get the mouth thing on occasion,but not like before... My eyes are a constant struggle. Always changing. My goal, Dr. Steven foster!!!!!!! Crowneagle,he's near u,in Waltham I believe... Deb.

[crowneagle]

Crowneagle, hello. I remembered u because you're from Mass. I am as well. I'm sorry about you're dad and all you're going through... Im sure u know already about how great everyone is here... Support is so important... Knowing you're not alone helps so much...... Best to u,crowneagle..... Deb.

Hello Deb, Where abouts are you in Mass. I'm on the shores of Webster Lake or by the indian name

Lake Chargoggagoggmanchauggagoggchaubunagungamaugg
roughly translated to mean "You fish on your side, I'll fish on my side and nobody fishes in the middle". It's my pleasure to meet you.

[crowneagle]

Thank you for your thoughts. I've been focusing on this today; but not that closely LOL!. Been using Miralax, epson salts, olive oil, laculose and plenty of clear fluids. I do not want to start chemo until I've flushed myself out. Don't want anything in me for the chemo to bind to. Has anybody else had this problem. I get it every time when I've had a nasty attack.

[crowneagle]

Nothing seems to work except warm
salt water was helpful.

[crowneagle]

Nothing seems to work except warm
salt water was helpful.

[crowneagle]

I've seen Dr Foster. I'm now under the care of one of his former fellows__Dr Anessi. Great guy. He was way ahead of many of the other doctors. I see Dr Anessi in Worcester. I grew up with some of his assistants; so he takes extra time with me. Eye problems were the first manifestation of my disease.

[debra]

C.E., nice to meet u as well... I'm from westroxbury Mass. Origanaly, on border of Rosie and border of Dedham, currently in the ever so lovely Nashua,NH... It's a very small world huh? I still look and wonder about Gary from Boston,and hope he just stopped posting cause he got cured! Always looking for local people, to see who they see for doctors ect... Anyway, I hope the best for u! Hope to see u around, but of course sorry u have to be here...... Deb.

[debra]

C.E., wow you've seen Dr foster too... I've talked to his nurse but that's it so far. Good for u! My eyes also were the first to be effected... It's great to know you're in great hands.. take care of you're self...... Deb.

[crowneagle]

Let me see, I'll list all my doctors. I have a occular immunologist, two neuro immunologists, neurosurgeon, hematologist, rhuematologist and a pulmonologist and of course my GP. I lost my sight in my left eye because I had a hemorrhage in the back of my brain. The sight has come back for the most part. My main doctors right now are the neuro-immunologists. They are pulling all the strings. My lungs never got that bad even though I had granulatomas that were biopsied but the biopsy was inconclusive. My brain biopsy was a trip and I was very happy with the neurosurgeon. He was out of Loyola in Chicago. He sliced my forehead from temple to temple and peeled back my forehead and biopsied a lesion in my right frontal lobe. I was up and walking laps around the medical unit that night. I live in Massachusetts and we have some of the best minds in medicine and it still took five years for a definitive diagnosis. My Wegners is atypical which is why it took so long to pin down. The doctors all get locked into their way of doing things and sometimes have a difficult time thinking outside the box. In the end, they acted fast because the disease was progressing rapidly. The biopsy of the brain confirmed everything. In hindsight, the only doctor that never wavered was my occular immunologist Dr Anessi. He told me three years ago he was going to try to save my life. He fellowed under Dr Foster in Boston at Mersi. Here is a MYSTERY DIAGNOSIS episode on You Tube https://www.youtube.com/watch?v=b62YET6QVUY