View Full Version : still in hospital getting better

10-06-2009, 09:09 AM
wow I learned my lesson on listenening to myself and not doctors. so I stoped taking the sulfa and was given keflex that didnt stop the infection. so onw week later I go to the emergency room with arthritis and kidney pain I refused pain meds so the pain wsnt that bad. they gave me MACRO BID for the infection. so I got home and looked it up and it said in very small numbers it had been known to cause drug induced lupus. I chose to ignore that becasue I dont know this disease and I dont yet know my disease so I asumed I would be safe.

hours after I have terrible flank and back pain that was radiating into my abdomin and chest. I think that it is the kidney infection and the doctor in the ER confirmed again that there was slight evidence of UTI. so I go home and continue taking my MACRO BID

the next day i was experiencing ascending, progressing paraylisis in my legs. they hospitalized me for guilian barre syndrome again and diagnosed me with CIDP or chronic guillian barre syndrome. during this whole time I am taking this macro bid and my pain is so excrutiating that i am piggy backing 4mgs of morphine, 10 mgs of percocet and toradol all day. I insisted on a kidney scan and the doctor abliged on a whole ultra sound of my trunk. everything was normal and my infection had gone.

I stopped and remembered the macrobid. when had that pain started? with out the doctor around I immediately started refusing that treatment knowing i had no more infection. with in one day the pain had started to subside. then I told them I wanted neurontin for the pain so I am now virtually pain free.

SO now I am sooo much more symptomatic. one month before I entered the hospital I had a slightly possitive ANA and some symptoms of myalgia and it is still believed that my neuropathy has a separated pathology than lupus.

now I have a very possitive ANA he said something like 1/1800 if that makes any sense and he said it had formed a speckled pattern. I am soo photosensitive that I think even the covered indoor floreecent lights are making my face feel tight and hot and my heart races.

other than that right now It has been the first time I have been pain free for over a month. i am on plasma pherisis so my blood is being washed of naughty protiens that want to produce dangerous antibodies and also I am on solumedrol.

I will go into detail about my exact diagnosis later but lets put it this way my odctor says that it is beyond the capabilities of anyone in this town (las vegas) so he mentioned the MAYO CLINIC.

I think the steroid detox is throughing me into emotional lability and i am haveing extreme mood swings. other than that I feel optimistic that my constitution is too strong to be knocked down by a rogue immune system alone.

10-06-2009, 07:04 PM
whoops it was 1/800 but the doctor says that it was high

10-06-2009, 07:27 PM
hi ricketyrose....i can not believe that you are still in the hospital....omg, you must be going crazy by now....i hope you break out really soon. I am so glad that they have relieved your pain, now if they can just get you well enough to go home. I have had several experiences with the Mayo Clinic both in Florida and Minnesota....i loved both places. Everyone is so very professional and caring....if your dr. recommends you going there, then don't worry, you will receive wonderful treatment. They have hotels attached to the clinic (both locations), and this makes it easy for family members to travel with you. Please take care, and keep us posted.
My ANA is 1/1:280 and homogeneous...i understand that this reading is a relational equation, and the lower the number on the right, the higher the presence of anto immune antibodies. This is a poor explanation, and i know someone will be along who can explain it a lot better. take care, sending you hugs for encouragement.

10-08-2009, 01:24 PM
Hi Ricketyrose;
I responded to your other post, but just wanted to give you some information on ANA and speckled pattern:

The preferred method of testing for ANA is the immunofluorescent (IFA) technique. Alternative methods such as the enzyme linked ELISA method are more likely to cause false positive results. Another benefit of the IFA ANA test is that the ANA detected in the IFA results yield distinctive staining patterns in the nucleus or cytoplasm of the reagent cells used to perform the test. These staining patterns offer specific clues as to which particular antinuclear antibody or antibodies may be present. The specific autoantibody that's present, in turn, gives the doctor information about what autoimmune disease may be present or what other additional specific autoantibody tests need to be performed. In some cases, more than one autoimmune disease (overlap syndromes) may be present, which causes more than one ANA pattern to be present in a sample.

Some patterns are more specific for particular diseases than others. For example, in SLE, a homogeneous pattern is present, whereas a nucleolar pattern is seen in scleroderma and a centromere pattern in the CREST variant of scleroderma. The type of pattern determines what antibodies might be present. For instance, in a homogeneous pattern, anti-DNA antibodies are possible and this test would be recommended, whereas it would not be recommended in patients who have a speckled pattern ANA (such as yours). The most common secondary antibody tests performed based on ANA results include: anti-DNA, anti-Sm, anti-RNP, SS-A and SS-B.

The homogeneous/rim ANA pattern can be caused by: antibodies to double and single-stranded DNA (seen in SLE in high titers and in lower titers in other rheumatic diseases),; and antibodies to histones (seen in drug-induced lupus), and deoxynucleoprotein (seen in SLE).

A speckled pattern can be caused by the following antibodies: Smith (Sm), which is diagnostic of SLE; nuclear RNP, which is seen in high ANA titers in mixed connective tissue disease (MCTD) and SLE; SS-A (Ro), which is seen in Sjogren's syndrome and SLE; and SS-B (La), which is seen in Sjogren's syndrome.

The centromere pattern of ANA is seen in the CREST variant of scleroderma.
A nucleolar pattern is caused by the following antibodies/antigens: RNA polymerase I, which is highly prevalent in scleroderma; fibrillarin and also DNA topoisomerase I (Scl-70), which are both seen in scleroderma; and PM-scL, which is seen in polymyositis.

An MSA pattern is caused by antibodies to mitotic spindle apparatus and NuMa; these antibodies can be seen in carpal tunnel syndrome, SLE, and Sjogren's syndrome; the cytoplasmic nucleolus pattern is seen in polymyositis.

With a high ANA and a speckled pattern, your doctor should now test for those anti-bodies I mentioned above. I hope that this was helpful to you.

Peace and Blessings