Cedars~Sinai Dr. Lewis

Dear LMayberry,
I think people with autoimmune diseases average something like 11 doctors over five years before they get a proper diagnosis and treatment…

Not having support from friends and family, and economic considerations make this all the more difficult for you…hang in there and reach out to people with your condition here:

https://www.foundationforpn.org/what-is-peripheral-neuropathy/evaluation-and-tests/autonomic-nervous-system-testing/

http://www.dysautonomiainternational.org/

Your heart rate and blood pressure need to be carefully measured sequentially while you are lying down, sitting up, and then standing. The sequence should be timed properly in order to demonstrate that you have orthostatic hypotension (low blood pressure with upright posture)

Your low blood pressure while standing could be what is called neurally mediated hypotension, which just means that your low blood pressure is being caused by your nerves not working properly.

http://www.njcfsa.org/wp-content/uploads/2010/08/4-11-Patient-Unofrmationon-Neurally-Mediated-Hypotension-and-its-Treatment.pdf

The body can sometimes compensate for the orthostatic low blood pressure by making the heart race (tachycardia)…when the body makes this compensation fast enough the person may feel faint or sickly but they won’t actually collapse.

If the body makes this compensation during the test the diagnosis will be POTS- postural orthostatic tachycardia syndrome rather than neurally mediated hypotension…but both diagnoses fall under the category of dysautonomia I believe.

Proper hydration and extra salt consumption along with support stockings can help with low blood pressure. Cooler temperatures also help. Swimming in a pool is like being in a full body support hose which allows you to fight the deconditioning which naturally happens when one has NMH/POTS.

Living in a nursing home you might be being fed a salt restricted diet, but there is more and more news everyday about how salt restriction can hurt the health of seniors. If you have been prescribed blood pressure lowering medication your dosage may need to be adjusted by your physician.

In people whose low blood pressure is due to demyelination of the autonomic nerves IVIG can work like a miracle.

I believe Vanderbilt has a dysautonomia clinic and has been conducting clinical trials with IVIG in people with NMH and POTS.

If I were in your shoes I would call the receptionist at the office where you are supposed to have the autonomic PN and ask to be put on a list to be called in case there is a cancellation. Tell him/her you are willing to come in even at the last minute. Tell him your situation- that the nursing home you are in is costing you $7,500 a month and you are running out of money as your testing for autonomic PN has been put off from January, to April, to July…

I have asked to be put on a list to be called if there was a cancellation on two occasions- once I got a call back from the receptionist the next day which moved up the appointment a full two months, and on another occasion I actually got the appointment for the following day.

Even though you have every right to be angry and depressed about your situation remember the receptionist hasn’t been one of the doctors failing to diagnosis and treat you…give him your most cheerful self but tell him the candid truth that your low blood pressure is keeping you in an expensive nursing home that you otherwise would not need to be in and you can’t afford it…even if the receptionist has never had a chronic illness himself he will be able to understand your economic need to be seen sooner than July.

If you get an NMH/POTS diagnosis maybe you can find a specialist much closer to you than Cedars Sinai…

… and if you have NMH/POTS but no evidence of CIDP maybe Vanderbilt or Hopkins or the Mayo Clinic in Rochester would be better places for you to make an investment of your time and money…these are the institutions I have run across as doing research into NMH/POTS/Dysautonomia.

Best of Luck

Oh I’m sorry I confused Cedars Sinai with Mount Sinai

I have not heard of Northera as a treatment for autonomic CIDP but I have heard of it being used in cases of pure autonomic failure

So it seems like you are on the right track with pursuing the autonomic testing…and you need a referral to a place where the testing is already up and running.

You might have better luck finding an autonomic testing clinic near you on a dysautonomia website.

Maybe your original Neuro who referred you to the neuromuscular neuro would refer you to the up and running testing facility when you tell him how many times your appointment has been put off.

I have been treated at Cedars-Sinai since 2008. Their specialists helped diagnose and treat my GBS/CIDP/MFS. I have participated in their special intensive 2-week rehab program for CIDP survivors, twice.

I transferred my care to Dr Lewis when he came on staff and Cedars became a “Center of Excellence”. I continue to see Dr Lewis, but now 10 years out from being afflicted, my appointments are no longer regular. I saw him last at the GBS/CIDP Foundation seminar in 2017 (held at Cedars).

I’ve not had a problem getting an appointment with Dr Lewis. He doesn’t take all insurances (he takes most PPO’s, Medicare Supplements, but few HMO’s)… so you will need to confirm if he takes your insurance before making an appointment. Here is the information you need to make an appointment with him:
http://bio.csmc.edu/view/11089/Richard-A-Lewis.aspx

LMayberry,

Glad to hear you will get an appointment with Dr Lewis! I hope his suggested treatment options will help you get your health back on track.

If you just got Medicare, you may need to get a Medicare Advantage (MA) PPO as “primary”. Parts A & B are original Medicare. Part C is the MA Plan. Part D is for prescription drugs. The MA PPO will cover Parts A, B, & D expenses better than Original Medicare.

Another option is a Medicare Supplement Plan (AKA a Medigap Plan). These require that Original Medicare be “primary” and they kick in to pay what Medicare doesn’t cover. There are a wide choice of versions and they can be more cost effective than a MA PPO Plan. Please see the following table that compares the versions:
https://www.medicare.gov/supplement-other-insurance/compare-medigap/compare-medigap.html

Best of luck on your new course toward recovery!