Anyone have the FGFR3 antibody gene?

I forgot to mention that I've had progressively more too tingling, shooting pain and numbness in my hands too.

Hi Darlia (@darlia) -- I have not tried the medical cannibus. I wouldn't qualify as a chronic pain patient. I have no pain with my neuropathy, just the numbness. I do have some pain with the polymyalgia rheumatica but the prednisone keeps it to a minimum and I'm hoping to be off of it in 3 months if my tapering plan is on schedule. I'm on 2 mgs currently and that seems to control the pain and stiffness.

I'm tagging Chris (@artscaping) who has discussed using medical cannibus to see if he can share his thoughts and experience with it.

John

Thank you @johnbishop . I just watched this and other videos associated with it too and I can see some good detail. I am posting it on FB and Google too for reference for others (INCLUDING so my husband can watch it). I wonder now after watching a couple of these, if my pelvic floor disfunction is due to the peripheral neuropathy also. I went to a Woman's health Dr and she did some treatments which have to be done to the inside of the vagina to reach those affected muscles (in a man they have to go through the rectum). Then I had physical therapy for many months to help which did help, but the problem is not gone and in order to help it to stay under control, there is a tool that you can buy to use on yourself for treatment. I was told by the dr. to get it, but it is not covered by insurance an it can cost between $50-$80 depending on the company you buy it from so I have put it off. It is a pelvic massage tool. It is shaped like a large 'S' and they even have a Youtube video of how to use it on their website. I can't remember the name of the website/company but if you do a search for pelvic massage, I think it will come up.
So, if I stand or walk more than a little bit, it flares up and it feels like when I stand up, like my insides are going to fall out!. That is another reason why I needed the rollator, not just for the neuropathy and my issues with my feel and legs. I think it is called a Therawand. Try searching for that. Anyway, after watching one of the neuropathy videos, the Dr. stated that the pelvic is affected so now I need to find out. (will probably find out at my Mayo appt in March) Until later. Darlia

Appt is now set for the end of March. Hope I get to go. If I can't afford the trip I will reschedule. I am into more than 5 1/2 yrs trying to get SS Disability. I had my last appeal hearing in Sept. '17. It was actually that the appeals councel remanded the 1st judges decision to deny my case so it had to go back before another judge, which is what I did in Sept. It took like almost 2 yrs to get that hearing!. So now a day ago, I think first of all that I am going to be granted disability because I think surely with this Peripheral Neuropathy being exposed and it is non curable and so debilitating, the judge will have no problem seeing this... I was WRONG!. She actually found my case as she marked it UNFAVORABLE!. So I am still in fighting mode. I can appeal it again and it will go to the appeals councel...again. I don't know how long that process will take again. But if anyone out there knows or has any help that they can offer, please feel free to give it. I am wondering too, has any one out there ever received a favorable decision for Peripheral Neuropathy for SS Disability?. She acknowledged that I have this disease and the others the I have too, but she said that it is not 'severe' enough to be found to be disabled. So, I am at a loss! Darlia

Thanks Darlia (@darlia) - I guess I need to get out more ☺ I had not heard of a pelvic massage tool. Interesting and you helped me reach my goal for today and it's still early! - Learn one new thing each day. I think this is what you were talking about:
https://www.cmtmedical.com/product-category/pelvic-pain-2/therapy-massage-tools-2/

Hope you have a good weekend.

John

Hi @darlia, I'm sorry you are having to go through such a hassle to get the social security disability benefits for peripheral neuropathy. I found a couple of links that may be helpful.

Foundation for Peripheral Neuropathy - Getting Help for Peripheral Neuropathy Social Security Benefits
https://www.foundationforpn.org/2016/05/08/5217/

SSI Resource Center - Facts about Peripheral Neuropathy and Filing for Disability
http://www.ssdrc.com/ssd-peripheral-neuropathy.html

DisabilitySecrets.com - Getting Social Security Disability for Peripheral Neuropathy
https://www.disabilitysecrets.com/social-security-disability-neuropathy.html

John

@johnbishop ..yes, this is correct. These are the therapy tools. The company I had been instructed to look at by my Woman's Health Specialist for pelvic pain, actually has instruction videos that show you how to use the therapy wand. When I was going to the PT for this too, my therapist and the Dr both use their finger inside on those muscles to massage and release the painful trigger points. It's painful when they push on them but eventually it gets better. My original Dr who recommended the pelvic floor specialist is an Orthopedic surgeon at the Missouri University of Orthopedics. She was the one and only Physician of this kind in the whole Midwest! Dr. Hwang. But now she's moved to Chicago ... So that left us without any care! So my last appt with her before she left was in Aug and she recommended that I purchase the took which is often called a Therawand. Then I can make an appt, she said, to see the therapist who will teach me how to use the wand. But it looks like more and more companies are now out there selling the Wands. As I had contacted my insurance company to see about coverage, they didn't cover it, so I decided we'd wait to purchase. You can even get it on Amazon!
Then I told my Dr. That even if I did get it, I don't think I can manage to use it probably on my OWN. It works to release the tight muscles on both sides so that is why it's in an "s" shape. Originally it didn't have the knobs on one end but then they"improved" the design.
I'm glad I was able to help you with your goal too. I have so many experience's in the health and medical field as a patient that my mom calls me a "walking medical encyclopedia" lol lol. She asks me sometimes for advice! (Not often)....
So with this frigid cold every where, everybody stay warm!!
Darlia

Than you @johnbishop . I will look these up! Do you have SS disability? Darlia

@darlia - I don't have SS disability. Actually I'm still lucky enough to be able to work full time at 74. My neuropathy is just numbness in the feet and ankles and I am still able to drive. I've got other conditions that I wished I didn't have because they prevent me from doing much walking - lower back pain from osteopenia and degenerative disc disease. I used to love walking and now I just can't go more than a couple of blocks at a time or less. So, I do virtual walking and dancing ☺

John

@johnbishop How does this work for burning calories? Some of my infirm humor.