Diagnosis Limbo-Out of the fire and into the frying pan - Lupus Message Board

franstranges · 01-08-2005, 08:28 PM

I dont believe that I should be in this board. From what I have read, I hope/believe that this is not a possiblity. However I still have to be tested. For the last 7 months doctors and nurses have scared me with the idea of MS, however last week my mri came back completely normal. Now the neurologist wants me to get tested for lupus. Back in june I was having severe chest pain while at work, and tried to got to the back so I could sit down but before I could make it I pasted out. Within three days I completely lost my vision in my right eye due to ON. I only got partial remission and so vision out of my right eye is completely useless. Aside from from what I think are normal growing pains, some dizzy spells and ON, doctors believed I had MS. But as I already mentioned my test results did not comfirm this and now want me to bet tested for lupus. Also after I had passed out I had to get a ekg done. It came up irregular (as if I had a heart attack) (but I am a relatively healthy 21 year old female so that is highly unlikely) My stress test and my ultra sound came up normal on my heart but my holter moniter turned up some irregularities. They made me do a tsh test that came back .33 which they said was slightly low but not uncommon, nothing that could explain this. The neurologist and the cardiologist believe that the sudden heart irregularities and ON are completely unrelated and coincidently occurred along the same time frame. I thought I was in the clear when they told me that it was not MS, but now they want to continue testing. They told me from the looks of it, my eye sight in my right eye will not come back. Its possible that it can, but not likely since the scarring. There are no autoimmune disorders that run in my family circles and I have never been on any medications (aside from normal antibiotics, and prednisone for the ON) that could have caused this. If this sounds familiar to anyone please let me know. I am going mad in this diagnosis limbo and am ready just to get on with my life. Thank you in advance for sharing your advice and your own experiences with me.

VeeJ · 01-09-2005, 03:53 AM

Dear franstranges,

Your phrase "normal growing pains" caught my eye. In my teenage years (many moons ago!), I had extended bouts of major pain along the long bones of arms and legs, elevated ESR, irregular white blood count, persistent low-grade fevers, and headaches. My small-town doctors called these episodes "growing pains".

Thirty or so years later I was Dx'ed with the SCLE "subset" of lupus and read a fascinating article on lupus "alternative criteria", by Dr. Graham Hughes, the eminent British rheumatologist. AngelicBrat listed the standard "4 of 11" diagnostic criteria for lupus, PLUS this "alternative criteria" list by Dr. Hughes's. See the "stcky post" at the front of the this board for both lists; and you'll see "growing pains" on the Hughes list.

There's also a separate "sticky post" for antiphospholipid syndrome that may be of interest to you. It can occur with lupus or on its own.

Is "ON" optic neuritis? Dr. Wallace mentions it in his lupus hardcover. This is an excellent book; but there are several excellent hardcovers out there, available for free in most libraries and also in bookstores.

What led your drs. to test you for MS? I was getting electrical-like tingling sensations at the point I was Dx'ed with lupus (plus a common array of fatigue, weakness, skin rashes, etc.).

Whatever is going on with you now, I truly hope you get matched up with an excellent rheumatologist and get things tracked down quickly. I hope you keep posting, as least until you get some clearer answers.

Best wishes to you,
from Vee

Kathie T. · 01-09-2005, 10:22 AM

I am totally with you! I am in the diagnosis process as well. It is really a tramatic thing especially when you've never really had health problems before. I was used to getting the sniffles going to the doc who magically cured me, and I always felt much better. Now it is another story, but slowly I am finding I am getting answers, though it is a slow lengthy bumpy process.

Two things stuck out to me, I don't know what ON is. But when you talked of blindness Lyme Disease causes speratic blindness. Do you live in a tick infested area? Perhaps a trip to the Lyme board might give you good info. Just a thought.

The other thing to know is that when strange things are happening to your body, it is common to feel more anxiety. I was always a mellow person and well the symptoms I've had in the past year have been terrifying. I have found that because of the symptoms and feeling that my body is just not right, I developed panic attacks and anxiety symptoms. A fast heartrate, irregular heartrate is among them. It was hard in the beggining to sort out the anxiety symptoms from the real ones, but for me there were both. About half were anxiety related and half are not.

I by no means am saying you have anxiety. In my experience the docs were passing me off in the beggining as anxiety, when I infact did have very real symptoms that were not anxiety, but biological. However, some of the symptoms might be anxiety related since your body is doing bazaar serious things, and you are not getting good answers from the docs.

Anyways keep us posted. I am so with you. I am going through the exact same thing. It is scary, but the best thing I found is to stay informed so you can be really assertive with the docs. They can be jerks. Good luck. Please keep me informed.
Kathie

VeeJ · 01-09-2005, 02:27 PM

Dear franstranges & Kathie,

About anxiety & panic attacks & the like: That's another thing Dr. Hughes, the noted British rheumie, talks about. See the sticky post re: lupus diagnostic criteria. Interesting, yes?

I had a lot of those in past years---and absolutely zero since being on Plaquenil. Broke out in a sweat, with racing heart & a panicked feeling---in elevators, subways, while driving & stuck in traffic jams. I'd not been like that prior.

I truly believe---but cannot prove---that these episodes were somehow more to do with my overal health status than my psychological state. I consider myself pretty down-to-earth, for the most part. Plus, I'd been the kid who loved the biggest waves and the wildest roller coaster.

I think others on the board here have reported episodes of anxiety. Maybe they'll chip in again on this topic. HANG IN THERE! Vee

franstranges · 01-09-2005, 04:47 PM

Thank you for your support and sharing your stories. I can say that I have not experienced any of the anxiety attacks and such to this date (well, i did break down in tears when the doctors first admitted me right away to see them, as usually there is a long wait) I didnt feel anything was wrong. The whole thing that triggered this was I passed out at work (which I have passed out numberous times since grade 7, which doctors passed off due to puberty) however this time I had incredible chest pain before it, and within three days i went completely blind in my right eye (due to ON/optic neuritis) Most people do recover from ON, however the damage to my optic nerve was to such and extent, I only got partial remission. Now doctors are telling me that my heart is acting irregular and that it is not caused by whatever made me blind and dizzy. Which both doctors continue testing for different things. But they tested me for MS because ON is usually in 55% of all cases the first visiable symptom. They had me scared. Well my mri came back completely fine on my brain and so now they want to test me for lupus. I was already tested for Lyme disease, which came back negative (not surprising-not many tick infested woods where I am) I am in no pain (my knees ache when the pressure changes but nothing major) I have many dizzy spells but think I must be allergic to somehting I am eating, and I do pass out from time to time. I can live with this. There are worse things. But I come from a family that goes over the top a bit. They are not handling this well. First they looked at homes, which I told them was a bit presumpuous. They insisted I look up the CNIB, doctors have told me not to worry that I wont loose any more of my vision, and I trust their judgement. I just wish my family could. I am just sick of all the testing you know? I could live happily not knowing, wouldnt change a thing, or at least in my own mind. But even with the good news its not MS, it completely changed how people act towards me. I was working full time and a student and my family insisted I stop that and take it easy (I ended up stopping school, only because I had to be at the hospital for IV treatments every 6 hours at first) I got that little piece of paper saying its not MS, and they are still treating me like I am fatal or something. I am sorry to ramble on, I am just a bit frustated. I have always been relatively healthy, and still believe I am, I hope that this just turns out to be one of those things that happens once, that they never explain and I move on, you know?
Thanks for listening. People around here seem to freak out if you talk about it.
Good lucK Kathie in your own Dx, I hope it all turns out well. Thank you Veej for your suggestions, I have read into them.