Anyone have the FGFR3 antibody gene?

Hi John~
The Neurologist at Mayo Rochester whom he is referring me to is Dr. Paola Sandroni. I didn't call on my own to make an appt. I had to wait for the them to contact me after they had an opening, after my Dr.'s referral was received there. Plus they had even sent me a letter first letting me know that they were booked up and would contact me when they could schedule me. So that all took about 2 months so it's a long process. And now the we won't be getting me in until April.
In addition to this, I have Gastroparesis, Hashimitos Thyroiditis, Fibromyalgia, Pelvic floor disfunction, Osteitis Pubis, Osteoarthritis, IBS just to name the main ones..so seeing the Neurologist is just the beginning, but I'm hoping to be taken under the care of the other specialists.
So again I say...Just Keep Swimming!
Darlia

Hi Darlia (@darlia) - It's good to hear from you. Thank you for the updates. Dr. Sandroni is a well respected neurologist at Rochester Mayo Clinic and I'm sure they will be able to help you. The weather will be much nicer in Rochester in April. If you are not familiar with the Rochester Mayo Clinic Campus, the following links may be helpful:

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Mayo Building - Mayo Clinic Patient Video Guide - Minnesota - YouTube
https://www.youtube.com/watch?v=Hl8T3ubzqsk

Keep swimming...and hoping you find some answers this year. Happy New Year!

John

Darlia -- when I had my appointment with a Mayo neurologist and was diagnosed with small fiber peripheral neuropathy, the neurologist took pictures of my feet with his cellphone and asked for my permission to use the photos in a seminar he was giving on PN and hammer toes which are common in people with PN. I've had discoloration in my lower legs for many years which I think is edema. I've never had the pain or shooting pains in the feet just the numbness.

I heard a presentation last year at the Minnesota Neuropathy Association on medical cannibus. Here is a summary of his talk:

Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, spoke to us about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He explained what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota. The other compounding pharmacy being the Mayo Clinic in Rochester. More information can be found on the Lake Elmo Pharmacy website -- http://www.lakeelmopharmacy.com/pain-management-2.html.

It may be something to discuss with the Mayo Neurologist if a compounded medication is an option for you.

I like your tagline from an earlier post - "Keep Swimming!"

John

John~
I appreciate ALL of the is info. I didn't know that Minnesota had medical marijuana! Good to know.
So yes if they decide that it will help me I'm game. Why do you not use it? I'm glad to hear too that this Neurologist comes recommended.
I have to get my insurance ducks in a row too before I go to Mayo.
I really do find it very helpful that you provide the links to what we need too. Yes, than you for acknowledging the phrase Just Keep Swimming... I've been using that for my signature statement for years now! Thank you again!
"Just Keep Swimming, Just Keep Swimming, Just Keep Swimming, Swimming, Swimming!"
Darlia

The medical Cannibus is a recent thing in MN and you to get on a state approved list I think by a pain management doctor but not sure.

@johnbishop Seriously?? I surely live in the ozone.

@parus -- yes indeed

Let me know what the Mayo Clinic says. They said my neuropathy was caused by an auto immune issue. I do believe something systemic caused this. They gave me gaberpentin (sp) to handle the pain and not help repair the nerves (a band-aid not a solution). They never did any further blood work like this test you had done. I don't have much faith in doctors after 4 years of battling this immune disease. You definitely need to get copies of all tests done which includes CD's of radiology tests. I've discovered even the people reading the tests miss things and when i felt they were not catching something I went to another specialist for second and third opinion. Sometimes they all had ideas and not all were the same. I'm finally getting better which I contribute to my research and diligence in documenting everything. I caught an allergy that I had causing sores and blisters which 3 doctors said was related to auto-immune BUT it was actually an allergy to Bactrin (antibiotic). Thanks for info on tests as I'll ensure my doctor runs this one.

@kgoodwin9 Yes to all you said. One thing you should know is that that there over 1,000 mutations of Amyloidosis, a protein disorder in the body. Probably 2,000, but we don't even know all of them. They can be both/either systemic or localized, primary or secondary, hereditary or accidental, whatever. One good place to start is by reading the Amyloidosis pages on the AmyloidosisFoundation.Org, MayoClinic.Org, Alnylam.com, and NIH.Gov, and any others you can think of. My own seems to be a combination of hATTRwt, AL, ACys, and another. As for treatment, talk to Mayo and some of the pharmas. ARUP in Salt Lake City is also pretty good at testing. Have your doctor contact them and AlnylamAct.com. As for medicines for such as neuropathy, There is not much, but more are coming out right now. I just read about some of them. FDA has approved Patisiran. Gabapentin was worthless for me. I would suggest you read my Amyloidosis Dossier which you can download free from https://bit.Ly/1w7j4j8 I have found that writing up this Dossier has helped me understand my own disorder, which I apparently began to show signs of very early. I am now 77.

So John, have you ever tried the treatment using medical cannibus?
Darlia