subjective improvement

Hey Kristin,

I hear you on this. It is difficult to measure, especially if you make improvements on your own. then you have to ask, was it the meds or that your system handled it. I’m going through that now. My Doctor is a big steroid fan too. You have a look at the protocol in the B-12 deficiency thread if you havn’t already. Sue put it in there. Apparently these doc’s don’t follow that. They tend to take it from their own playbook. You can shop around for a doctor that will agree with your idea’s on treatment but that is hit and miss.
Or play along with things and maybe he’ll change his decisions on what is best long term. You seem fairly young having an 8 yr old. Eventually a long term plan will become necessary. Pay close attn to all listed side effects and if you see them coming on, then the medication switch will be justified. I have become very impatient about a treatment plan for myself. I have improved on my own and after my next test result, he wants to start 3 mo trial on steroids. I will go along with that for a while, but eventually I would expect to try perhaps the cellcept or other drugs.

According to that Protocol I mentioned above, I don’t know how widely accepted that data is, but that starts out on IVIG and then based on how the patient does, switches around and steroids are down the line and eventually discontinued. I understand quite a bit how you feel as far as being treated with the best possible treatment asap. It is frustrating and stressful to wonder how much accumulated damage will occur until complete stability occurs, if it even does.

The toughest part is that you present all the symptoms but do not have enough criteria to make a definite diagnosis. The web site’s kelly listed
[url]www.cidpinfo.com[/url] has the current clinical and laboratory items required
to establish potential, probable and definite diagnosis. Perhaps improvement on the steroid will bump it up one closer to definite.

Good, luck, I plan on watching your situation as a personal interst in how this develops being I am in the same boat as you. I am missing the elevated CSF protein component, so I am in the probable slot. I have lots of EMG data showing conduction and demylination, atypical clinical data, plaque on brain MRI etc. know remittance and triggered by surgery and they are still scratching their heads. Like I said good luck, try and line up a couple of opinions on the issues, I am going to as well.