Today is cold and i dreaded even walking out to the garge to get in the car,, my legs feel like popsickles when it gets cold,, but I made it and got to the neuro,, legs numb and burning and shooting pains all the time,, so i get in to see her,, very nice lady,, she showed me the small fiber report, significant small nerve damage, she said with all your other symptoms tis shold be the smoking gun on teh SS DX,, she thinks I need to be on heavy duty immune modulators,, but cant prescribe them ,, she wants to talk to the rheummy first,, but even at that,, I had a meeting with the A88Hole ID on tuesday also,, guys a real jerk,, he told me if I do go on immune supprsents,, I need to go back on antifungals again,, but the catch is insurance wont pay for more then one month,, this was the sme office that told us,, we;l get you the oral version of antifungals,, they never did and i was out a month,, i told him that on tuesda,, he didnt appreciate it,, i dont suffer fools any longer,, and told him what i think of him, and his arrogant manner,, dresses like a gangster,, clothese on his back prob cost more then my car
Hi navydad :)
Maybe it would be good if your neuro and your rheumy could get together and come up with some sort of joined up treatment plan. It's hopeless when there's no joined up thinking and you are passed from pillar to post.
I can't comment on the insurance bit because I just don't understand how your system works - or doesn't - as the case may be.
Take care - Scottie :)
navydad, I think you talked about your immune system doctor ---is that right??? Your neuro is right about you needing heavy duty modulators. I do too, but I can't take them because of my immune system or t-cells being so low. Therefore, I was put on the IVIG and have it every month. I do not take any autoimmune modulators but sure wish I could. However, I am on a new product now and find that I am feeling better.
I think that you need a neuro that will fight for you and get you on the IVIG and also fight with your insurance company so that you can get an appeal or something. It is hard to get on the IVIG and you need a diagnosis that fits with the criteria set up by whatever committee monitors the IVIG. I was lucky enough to have the myasthenia gravis and get the IVIG because of that disease. IVIG is one of the treatments for myasthenia gravis.
Neuropathy is also one of the diseases that is treated, but I think that it depends on the doctor and their ability to deal with the system. Also, I found out after I started the IVIG that if I had been diagnosed with the myasthenia before I went on disability and medicare that I would not have been eligible for the IVIG. It is really a crap shoot and hard to keep up with.
Just out of curiosity, do you have another neuro diagnosis besides the Sjogrens symptoms. Would be internesting to see what another neuro would have to say. Might be able to get you on the IVIG if you could get a working diagnosis. I am not great, but my balance issues, etc are so much better. I still have infections but I am wondering how bad they would be if I wasn't on the IVIG. I have been getting IVIG for 25 months now.
If you can have your sons help you figure this out cause it might be a good option for you. It is really a problem trying to keep up with the doctors and what they think. Good luck. Irish ;D