sick and tired....

[fly-by]

Hello everyone :wavesmile:

It's been a few weeks since I've been on, but have been having a pretty rough go of it over the last month or so. I really don't know which I'm more disgusted by at the moment the lupus...the test...or the doctors.

Back in March I had to have a spinal tap to reduce intracranial pressure ( I have a pseudotumor cerebri ) which resulted in a spinal fluid leak. Of course this required another trip to the hospital for a blood patch. This is all of course beginning to become routine for me ( not that I will ever begin to enjoy it! ) The blood patch this time however didn't go well....the doctors still aren't sure exactly what happened...but I spiked a temp. of 103 with immediate head and neck pain as well as excruciating hip pain. I was admitted and treated with mega dose pred for what the neurologist thinks was an exascerbation of my cns vasculitis...for lack of anything better to call it!

I have informed my doctor that was the last spinal tap I will have...ever...no questions. And he in a round about way agreed saying we could look into a shunt placement. I am on meds (diamox) to try and keep the pressure down but I guess it only does so much. I have alot of neurological symptoms as well as vision problems and when the intracranial pressure goes up they just get worse.

My rhuemy is waiting for the results of the spinal fluid studies that were taken during the tap ( they are still suspecting MS ) He wants to try me on rituxan. I had an appointment with my neuro yesterday but wasn't able to keep it because I was vomiting ...trust me if I could have been there I would have...now I have to wait another 4 months. Gotta love it!

Why am I vomiting? Well I'm glad you ask! I do have IBS...but the gastro says it's a combination of the neurological stuff, lupus ( gastroparesis), and of course all the meds I take. In the last 4 months I have lost 70 pounds...not that I'm complaining...but when your losing it in an unhealthy way. Besides that vomiting is right up there with spinal taps on my NOT to do list :eek:

I'm sorry this is so long. Guess I had more to grumble about then I thought...so thanks if you got all the way through. I do appreciate all the support here. You all stay in my heart and in my prayers.

[Maia]

I made it all the way there and here's some (((hugs))) for you. I think you probably need a few extra. Hopfully the Rituxan will be approved and it will be just the thing you need. I hope you are able to treat yourself to something - a movie out some night (or in with VCR/DVD player). Take care, and hope things improve soon.

[Lily]

((((((((((((Fly))))))))))) BIG HUGS!! :hugbetter:

I'm sorry for all you are enduring Fly :( its awful! I can understand your frustration of having to now wait 4 months to see the Neuro again :mad: through no fault of your own either :( is there anyway that can be brought forward?

Thats a huge weight loss Fly................. :eek: :eek: :eek:

I have everything crossed that the Rituxan is a distinct possibility to help with your problems and that you dont have to wait ages for anything to be approved. More than that though I hope that they sort you out soonest and are able to get you feeling much better soon.

I figure some chocolate truffles are in order, so I'm sending some over, along with a great big lupie hug of course ((((((((((Fly)))))))))

Take care,

love
Lily

[jude mack]

Hi Fly :hug:

I'm sorry you are having such a tough time and having to wait for another Neuro appointment. I'll pray the Rituxan works for you and the sooner the better. Sending lots of hugs and prayers your way.

Hugs Jude:)

[tessie51]

I can understand why you're 'sick and tired'. It sounds like you have a lot going on. I'm sorry to hear you have to wait four months to see your neuro-that's a hassle. I will be praying for you and hope things work out for the good. When are you supposed to hear about the MS-in four months? I'm praying that it isn't MS and nothing worse. Talk to you soon!

[fly-by]

Dear Maia and Lily:Pansy:

Thanks so much for you replies. Sometimes these cyber lupie hugs are the best medicine:hug: I know your's have made me feel better:)

Lily...my neuro's assistant is going to speak to him to see if I can be moved up on the appt. schedule or perhaps phone my rheumy with the results ( which he should be doing anyway...

Yes, it has been a significant weight loss...and I continue to lose. I'm having a really hard time holding food down. Good thing I had extra to lose, huh?

The issue that frightens me most is my vision. The cellcept doesn't controll the optic neuritis...so I now have scarring on both optic nerves. Then I've developed retinal vasculitis. Well I guess you get the picture. So it does make me a little anxious for better and more appropriate treatment.

The support here does ease that anxiety a little and makes surviving with these dreded diseases a little more bearable. You're all in my heart and prayers.

Take care.

[flutterbye]

(((((((Fly by))))))))

I do hope that you can see your neuro much quicker than the four months, at the very least that he gets the results to your rheumy.

I hope that if they decide on rituxan that you will be able to get it started soon, (if it gives you some hope I have had reallly good results from it) How long before you see your rheumy?

I really hope for much better days ahead for you.

(((((((hugs))))))))

[lazylegs]

Hi Fly-by,

That is just more than one body should have to go through. Is there anything they can give you to help control the nausea? Let us know if they do decide to give you Rituxan. In the meantime I send you wishes for better days ahead.

Take care,
Lazylegs