I haven't posted in a week or so. I'd had 65 great days followed with an episode of spasticity. Pretty severe one with fatigue. I went to a followup with a Rheumatologist for swelling in my right knee.
After having 2 major hospitals confirm Ms, He told me they are totally wrong. We all know how frustrating it is as we go through all of the appt's and testing and the wait....
To have gone through all of this twice for myself and actually felt so relieved to finally have it in stone (so to speak) was relieving.
The Rheumy said that what I have is coming from the Kidneys. He had pulled a biopsy from years ago and said that I now must stop my neurontin. When i told him its one of the only things that helps he continued to say it would worsen my condition. I asked him why? He said I am the man who has the answer to this mystery of your health . I am the man who has the medicine you need.
I felt like I was looking at Mr. Pride & Mr. Ego all at once.
After minimizing every symptom I mentioned and the pallor in my eyes....he then said, there are a few rare immune deficiency complexes and you have one. I asked him if he thought I was just making up some of my symptoms as he quickly dismissed most of them, he said No, i hardly think you can make something stand up on your kidney biopsy.
I asked him if it were lupus (answer of no), connective tissue disease (again no). Simply he told me to get off all of my medication and then he'd tell me what we were looking at. Maybe he has a good point but I simply didn't feel I could blindly throw it all to the wind on his being the solver of the mystery.
He then talked to me very condescending. I left crying and feeling very confused about it all. In one way he'd dismiss every symptom Id mention, but then turn and speak that he knew of this great rare thing I had, and that "only" he would be able to figure it out.
He wrote a script for blood work for , circulating immune complex, checking for esr (sed rate), Anca, and Ana, Complements 3, 4.
I called my family doctor the next day and she said he could not do this. That even if he is right he cannot just stop my treatment for Ms in the chance that both exist. She notified my neurologist whom called and told me to come in asap. He told me that the Rheumy had given away what he was looking for on the script so he copied the labwork that was needed and I'm in waiting status.
Im scared. After learning that Ms isn't life threatening and going through many attacks and doctors. To have all of it in question again is very very hard. My head hurts and the stress is just about to take me down.
I had learned to have such a positive outlook on all of this. Sure I had my moments. Now i only have fear. Although he may be correct and/or both conditions may exist, I wont return to him. My neuro said he had no right in the way he handled it for it is "your body". After the labs come back I will return to the larger hospital in a different state for confirmation.
Any thoughts? Anyone with kidney involvement from something else?
I now do not feel that I can take the copaxone with confidence. My neuro told me to continue it, but now I feel just lost.
Every day brings us closer to what we reach for .........in all things.