Hi,

I was curious how often the general population of KD patients meet with their neurologists each year. Mine insists on seeing me twice a year to check on mobility, breathing, disease progression, etc. Since I swim & do light weightlifting to counter the effects of the disease, 2 times a year seems like overkill, but maybe there's something I'm missing. There's not a lot that can be done except recommend physical therapy for any issues. Since I live in a western suburb of Chicago & she's at Northwestern in the city, it's a hassle to say the least.

Thanks

My neurologist has me see her only once a year and has been that way for the last 15 years. Since there's no cure or treatment (yet) I don't think there's a need for more than that.

Its certainly an individual choice. I use to go every 6 months to my neurologist and then went to every year once I understood the disease better. I haven't seen a neurologist in a couple years. For me, I have found a good GP that is sensitive to my needs and KD's progression so I feel that they are all I need at this time. I do try to keep up on research for KD as well as the MD community since I wouldn't expect my GP to be paying attention to this.

Having a neurologist on your medical team is important IMO. Since SBMA is a neuromuscular disorder it only makes sense to have a specialist in that area monitoring your case. Having a long-term medical case history is very useful as your symptoms progress. You may need referrals to other specilists and justifications for insurance purposes.

We don't often get to see the referral documents, or are aware of any back and forth between the doctors about your case. Since most doctors are not even aware of SBMA the referral provides them a resource to learn about SBMA. In some cases, the neurologist will have inside info on who the best specialist would be for an SBMA patient. The specialist should also copy the neurologist on their interactions with you. In some cases, the specialist may take action that is contraindicated for SBMA and the neurologist should catch that misstep.

Eventually, you will want a complex rehab powerchair and your medical history will be used for the justification. Every time you visit discuss with the neurologist ANY symptoms you are experiencing. (e.g. If you are experiencing swelling in the legs mention that so it gets into the chart. This fact will be used to justify leg elevation and tilt/recline options on a powerchair, something I find critical.)

Having this central source for your medical history will be very useful for any medically underwriting benefit.

I think a neurologist fits better than a GP as a type of case manager for SBMA'ers. Of course a competent GP should be on the team as well.

For me, given the slow progression of SBMA, I consider six months between visits optimal, going 12 months is not unreasonable IMO. I make appointments if I have a new symptom or am considering applying for some new benefit.

I think my experience is unusual in that I have a neurologist who has done beneficial things for me such as testing my vitamin B12 status which was dreadfully bad and vitamin D which was somewhat low. He also filled out the request for my handicap parking permit when I was losing my ability to walk. But regaining my fitness and ability to walk was something I had to figure out on my own. My neurologist was helpful in the time when I had a lousy primary care doc and I didn't know enough to be proactive in self management of my KD and related health issues. Now I only see my neurologist when I have something very specific to discuss such as last year when I learned I had lead poisoning, the most ubiquitous environmental neuro-toxin in the US. But he was completely clueless and useless on that topic. It's possible I will never bother to see another neurologist ever again.

This message has been edited. Last edited by: ToddAllen,