I’m looking for a competent and good dr. in the NYC or Bergen County (NJ) who treats SFN and EM. Thanks.
Hi, Jazzy
In the post you refer to SFN and in the header it’s SFH. You might want to correct that.
One of the things that would be nice to be able to do on this site is to search members by geographical location. But we can’t. So you may get more responses if you put a reference to your search area in the title, hoping to catch locals’ attention. Try something like Know a good Dr in NYC or NJ?
Good luck, and I hope that you get some helpful answers.
Seenie
Thank you very much!
Hi Jazzy,
I live in NY on Long Island. I can’t find a doctor who specializes in this area. I am using my neurologist and my rheumatologist. Neither one is really sure of anything. I have MS, Raynaud’s disease and several other autoimmune conditions and now what we think is EM.
I am only taking aspirin, one full dose a day with my dinner. Not sure if it’s working. I found out through my research last year, after my first full attack that it could be Fabry disease. I was tested for free. Through a doctor in the NYC who researches the condition. If you think you would like to be tested, reply and I’ll give you the info.
In the meantime, just know you’re not alone. I’m awake and it’s 5 AM and I am suffering tonight. I’m thinking I have small fiber neuropathy maybe.
Hang in there.
Thank you for your response Ann_A. Do you have Fabry Disease? I’ve never heard of that and just looked it up. Who does the testing just in case I want to look into that.
Thanks again.
If you have EM and SFN it could be Lyme disease. You might want to find a Lyme literate doctor (LLMD) who will order the necessary tests. The ELISA test most doctors use is notorious for false negatives and misses over half the cases. Most doctors don’t know that, and unless you can find one willing to order more sensitive tests like the Western Blot or some of the IGeneX tests, you’ll have to find an LLMD.
I’ve learned this the very hard way, was diagnosed with EM and SFN two years ago. Was told my Lyme test was negative (was also tested in 2014, same negative result). Late last summer my symptoms got significantly worse and I developed what my doctor called pure autonomic failure, which is a lot like POTS. It’s taken me all this time to figure out I likely have Lyme disease. I found a nurse practitioner who works in a practice with an LLMD and she had my blood drawn for testing (takes a month to get the results) and immediately started me on antibiotics. I will know for sure in two weeks but considering how I reacted to the antibiotics (got even sicker at first, caused by die-off of pathogens), it’s a good bet it is Lyme.
Lyme is in every state but Hawaii. Lyme hot spots are the Northeast and Upper Midwest. If you live in or have visited these areas you are at particular risk, especially if you spent any amount of time outdoors.
Sorry Jazzy, I should have told you that I tested negative. Someone here was discussing LYME disease. I have been tested through the years annually. We go out east on Long Island on the weekends and there are many wild deer there. Lyme is rampant. I mostly stay on the deck or in the house, I’m petrified. I was bitten by a tick years ago planting flowers. My cousin noticed it lodged in my leg. I thought it was a scab. I tested negative for lyme but doctor made me take the antibiotic anyway. I was bit on Long Island but in the western part of the island where there are no deer. There are raccoons, possums and small critters though. Yes LYME is a terrible illness and I urge anyone who has even one symptom or suspects they were bitten to go to the doctor. I didn’t get a bulls eye rash but the tick was in the leg.
I have been in contact with Dr. Joseph Jorizzo. He does work out of Weill Cornell/NYP Medical Center in NYC Thursday through Saturday.
The phone # that I have for him is a NC number for work that he does here in NC. That # is 336-■■■■■■■■. [Please contact me by private message and I will give you his email address.]*
I hope this information is helpful
*edited by Seenie from ModSupport
Thank you, Thumphries,
I didn’t know you replied. Just found your reply. Have you seen him yet? Any help?
Hi Ann, I am so sorry that it took me so long to respond. I’m not sure what happened with my notifications.
I have not seen Dr. Jorrizzo yet. We do stay in contact via email until my insurance will approve this. He is amazing at responding to messages.
Praying for you.
Be blessed,
Tammy
Hi Thumphries,
I hope that your insurance company approved your visit to this doctor. Currently I’m being treated by a rheumatologist. y neurologist has to approve the prescriptions that she, the rheum gives me as I have MS.
I recently located a Dr. in Mineola (Long Island, Nassau County) who has treated EM. I am going to see him next week. He’s a vascular specialist. I went to one a few years ago when the foot doctor saw red spots on my feet. She would treat me unless I was checked out and had good blood flow. I do. Unfortunately after seeing 8 different foot doctors not one would operate on my because I have Raynaud’s. Now this!
I will be back after my visit to the new vascular doctor. I hope you stay flare free.
I looked this dr up and his reviews are not stellar. Best of luck
Hi Jazzy,
I have been seeing Dr Jorizzo for three years. I think he is amazing. He is responsive and cares about how I feel and he takes the time to listen. He agreed to have a compound pharmacy I YC make up the Mayo Clinic Amitryptiline and ketamine compound cream. I don’t know who gave hi bad ratings but I a very 'fussy" and I think he is wonderful.
Good luck
Jordy
Sorry it took so long for me to rport how I did at the vascular doctor. He recommended that I up my dosage of Gabapentin. I was on 600mgs of it before this EM took hold for the MS nerve pain. O slowly went up to 900mgs and it made a big difference for me. I have only gotten one big flair but not as bad as I had earlier.
I do know that there are many people who have side effects from this medication and I realize how lucky I am that I can take it without the side effects. If you don’t know if you can take it your doctor can instruct you on how to increase the medication slowly. You will know if you have side effects, I think, early on in treatment with this medicine.
I hope this helps at least one of you, if not all of you