Lots of high Antibodies..but no answers

[CaryWhit]

Hi all,

I am running out of Dr's and ideas. My neurologist refered me to a rheumy and I saw him yesterday after a 45 day wait. He had reviewed my chart prior to seeing me and walked in and informs me I am in the wrong place. Says I need a hemotoligist. That I dont have Arthritis or Lupus.

I have a positive ANA smooth pattern but low titers. Positive Anticardiolipin which is double the normal range, elevated PTT,LA..High Sed Rate....Spinal fluid is high for "generic" protien and high for Mylen Basic protien...but only a 5..which suggest some activity in the past but no current MS. No "Bands"

I have constant fatigue, numbness in arms legs and shoulder, weakness in limbs, muscle spasms that are visible through my clothes, like I am being shocked,reynauds phenom. I also have lots of confusion spells, constant fine tremor in my left hand. My vision in my right eye has dropped from 20/35 to 20/60, 20/70 and at one time 20/100 with fade out periods, where it looks like a window shade is pulled down over that eye. Positive slowing on VEP.

I cannot have an MRI and 2 EMG's are negative. While I have high results for antibodies, nothing is off the chart.

Yesterday the Rheumy would look at a antibody result and say "Well 10% of the people can have that anitbody and not be sick...Next one, 20% of the folks tested have that and not be sick...I finally asked how many percent of tested folks have all of these...Well that shut him up, but I am still no closer to feeling better.

Not one of the 5 Dr's I have seen since February have offered anything to help, except Mirapex, a Parkinson drug, stopped my tremors for about a month, then stopped working.

Any ideas who to see and what to ask? I feel like I have Anticardiolipin syndrome, as that is where the symtoms fit the best, but I was told that they are not high enough to produce clots.

Most of the positive blood work was done about 2 weeks after the most serious part of the "attack" had subsided. Could any of these levels dropped in a 2 week time?

Sorry for rambling, but I am about to give up. Oh yea, I was a very healthy and active 37 y.o. male...Now I am a 37 yo male who has gained 10 pounds in 5 months and feels like doggy doo!

Cary

[Siouxbe24]

Just out of curiosity, what are your platelet levels and your ldh levels?

[scbagrrrl]

Cary,
I understand your frustration. I've got the autoimmune variety pack - lupus, sjogren's, raynaud's, rhuematoid arthritis, plus a few other diseases. I see a Rheumy, an endocrinologist and my general doc. The biggest challenge I've had is finding a good rheumatologist that listens. I've "fired" three of them, and I'm not too thrilled with my current one.

Last week I saw a hematologist. Actually he pulled in 3 others to sit in because I have such an "interesting case". For 3 hours, we reviewed my history, my tests, and answered a battery of questions. AND they took 24 vials of blood. I'll hear back from them in a week. It was a really positive experience - he said at worst, they could rule out some things.

Getting a diagnosis can be frustrating - and sometimes it takes a while for things to develop in the bloodwork. The approach of the hematologists was completely different than the rheumy (and I got in to see him in less than a week!) And when you get a diagnosis (dx), it seems like the promised land at first, but it's just the beginning - with many of the autoimmune diseases, there's not much you can do but treat the symptoms.

I'd get some referrals for a hematologist and see him/her. Find out what they say and then perhaps, find a new rheumy

Good luck and keep us posted.

[edited - please do not post personal contact information,
as per the board guidelines.
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[This message has been edited by moderator2 (edited 07-28-2002).]

[CaryWhit]

Well, I didnt have a Hemotoligst anywhere close to my small town, but I did get in to see an oncologist. Very enlightening visit!

He didnt seem real concerned about most of the antibodies, but got real concerned about the PTT LA levels. Am now pending results for factors 5,8,9,11& 12. He also says,,and I about pulled my hair out,,,that it looks like MS to him...I gave him my neurologist number and told them to chat.

I agree about the frustration. They could diagnosis me as having "green alien" disease and I would be happy.

As to the other post about cholesterol and platelets, my platelets are fine, right in the middle, but my cholesterol doubled in 6 months with no change in diet or activity.

More $$ more waiting,,,Oh well.

Cary

[scbagrrrl]

That sucks about the poss MS dx. I hope it's "Green Alien Disease" over MS. Your neuro didn't make any comments about MS prior to your oncologist meeting?

As I live in Atlanta, I've got a plethora of docs to choose from - thank goodness b/c I've fired 1/2 of them. LOL

I'll keep my fingers crossed and hope things turn out for the best. keep us posted on what the docs say -