Cedars~Sinai Dr. Lewis
May 4, 2018 at 1:28 pm
I was diagnised with CIDP November 2016 by my neuro who referred me UC Irvine Neuromuscular Center for a second opinion. UCI said that my tests showed NO signs of demyemination and said I had just peripheral neuropathy and have offered no treatment or hope. They were supposed to test me for Autonomic PN in January, then thy said April and as of yesterday, they said July. My problem is when I stand up, my blood pressure drops amd I fall down. I have a shattreed ankle and fractured tibia as proof. The hope was that could be treated so I could stand and walk again. They said they couldn’t fix that, which I really can’t believe.
Since I have two different opinion, I ammthinking of getting a third from Cedars-Sinai. has anyone gome there?
how long to get an appointment? I had to wait six momth to get to UCI after waiting four months to see my original neuro, with another two month wait dor the EMG/NCV testing and another month for results.
I am running out of money -I am ina nursing home costing $7500 per month – and of I can’t stand and walk about 20 feet, I can,t go home. I have no family and have lost most of my friends in the three years I have been sick. I’m at the cure or kill point.
Thanks for any help.
May 7, 2018 at 12:42 pm
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:
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.
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
May 7, 2018 at 1:29 pm
My problem with UC Irvine doing the Autonomic Testing is that they don’t have the equipment to do the testing. They said they would have it in January, but that didn’t happen. Then They said they would have it in April, and now they are saying July. If they couldn’t do the testing in a timely manner, why didn’t,t they send me someplace where it could be done? And when I asked what they could do for me if it was proven, they said they couldn’t do anything, which I don’t think is true. There is a drug called Northera that seems to be the answer to my problem. It is expensive, but not more than staying in a nursing home.
That is why I am hoping to get an opinion at Cedars-Sinai, which is not only a Center of Excellence, Dr. Lewis is probably the world’s leading expert in CIDP. With having two differing opinions, having a third seems to be my only option.
I have to stay local, because I can’t travel, as I have no family to help. Cedars is only about 25 Miles from where I’m at. Transportation would cost about $125, but that is half of what it costs for me to stay in the nursing home for one day.
Just what a little ray of hope that I can go back to my home, cat and big screen TV.
May 7, 2018 at 2:52 pm
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.
May 8, 2018 at 12:41 pm
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:
May 8, 2018 at 4:05 pm
Thanks for the information. I have Blue Shield PPO, but will be forced to switch to Aetna PPO in July. I also just got Medicare, since I was declared disabled two years ago.
Not being treated is a big problem for me, as I feel no matter what the problem is, something should be done. I have just been so frustrated.
May 8, 2018 at 6:02 pm
UPDATE: Gave C-S a call and they want my records faxed to them. My neuro’s office is almost impossible to get anyone to answer the phone so I emailed them and requested the records be sent.
I will follow up in a couple of days. And it was confirmed that they will tak my insurance, which is great.
May 8, 2018 at 7:10 pm
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:
Best of luck on your new course toward recovery!
May 10, 2018 at 7:04 pm
Hadn’t heard from my Neuro so I called them today. A couple of hours later, I got a call from Dr. Lewis’ office and I have an appointment in about five weeks! Since it took me over six months to get to the ineffective UCI Clinic, I am thrilled.
Thanks for all of your fantastic advise. I may not get the answer I want to hear, but I will feel confident in what he has to say.
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