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Jul 15, 2017 · Anyone here dealing with peripheral neuropathy? in Neuropathy

I feel your pain…no pun intended…I have your pain. I ended up seeing a rheumatologist at Mayo Scottsdale for my issues. As many find it is a trial and error process for pain management. I’ve tried so many I don’t believe there are any left. As it stands, I take 9 gabapentin and one cymbalta capsule a day. I seem to do fine with cymbalta. I take it in the morning to get the full effect. However, my neuropathy pain is so severe I also apply a fentanyl patch of 50mcg/hr every 2-3 days. I cannot function without the patch. Towards the end of the life of a patch, my pain is almost unbearable. Depending on the level of my activity, the pain can return just after 2 days. But my prescription only allows me one every 3 days. So, I have to either go without or stretch some out to 4 days when I’m not so active. I can’t get anymore than 30 patches in a 90 day prescription because of insurance. If I do it’s $1100 more!! I believe it will only get tougher for doctors to prescribe any kind of opioid pain meds. I pray my patches aren’t going to be effected by the new regulations by the Feds. I hope this will lead you on to some answers to your questions and eventually to some relief.

Jul 9, 2017 · Sle in Autoimmune Diseases

It seems like you will never get to the bottom of these diagnosis. With all the great doctors at Mayo they will eventually figure out any issues and stay on top of them. Diagnosis, i have found to take a year or more. The process of elimination will prevail. There are so many symtoms that are signals.

I am curious who your gastroenterologist was at Mayo? I go to Dr Burdick at Mayo Scottsdale and hope it isnt him.

Jul 4, 2017 · Why can't people with chronic pain/fatigue use performance enhancers? in Autoimmune Diseases

I live in Arizona which has a medical marijuana law. Sounds like you may have this available where you live “at 8,000 feet”. With the opioid Rx squeeze coming from Big Brother soon, I may have to resort to alternatives for my constant pain. Friends of mine vape with a cannabis oil with low THC (the good stuff) for nagging back, neck, and neuropathy pain. If smoking isn’t your game, then there is a large variety of backed goodies available. Just saying.

Jul 4, 2017 · Autoimmune diagnosing problem in Autoimmune Diseases

I haven’t noticed any unusual side effects taking Cellcept. I found it amazing that this drug is used for a variety of health issues. I have been taking 2-300mg tablets, twice a day for almost 6 years, which was soon after my first visits with my Mayo rheumatologist. He is treating a number of GPA (Wegeners) patients with great success. To tell you the truth, between the initial Rutuximab infusions and Cellcept, I am almost a new person than I was even 3 years ago.

Now, this med is not a cure, and I could be in remission, and may be for years. Even 20 years ago people with GPA didn’t live more than 5-10 years. So, this is a miracle treatment to me, because I fall within that 5 year window.

I am not averse to pickles or tonic water (especially mixed with Kettle One, and a twist) that you mentioned that I can recall. That use to be one of my favorite social cocktails. However, I have stopped drinking. I might have a beer once in a great while. The concoction of meds forbids me any alcohol. Believe you me, though, I’ve tried a ton of different “remedies” these past few years. However, I don’t recall these particular ones. Refresh my memory.

I hope I was able to help. Happy Independence Day.

Jul 3, 2017 · Autoimmune diagnosing problem in Autoimmune Diseases

I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow’s Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn’t literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I’m seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.

Jul 4, 2016 · Severe leg cramps in Bones, Joints & Muscles

My rheumatologist at Mayo Scottsdale, who I see regularly for my Wegeners & peripheral neuropathy, prescribed 0.125mg of Pramipexole (very small white tablet) twice a day when needed for leg cramps and my restless leg syndrome (RLS). I have used it for over a month and it has relieved the gripping leg/toe/foot cramps at night. When I have an over active day, I know I can expect cramps at night. So I take 2, about an hour before I retire with no cramps/RLS. I don’t take it for minor cramping which I seem to get anyway. My co-pay for the Rx is only $5/months supply which is cheaper than mustard, tonic water (yuk), & pickles (yum). I drink tons of water living in Arizona and I’m 65. I swim daily & take care of my own pool & have 2 grandsons 1 & 3 yrs old who live close. Keeps me going. I hope this offers another alternative to relieve your suffering.

May 9, 2016 · Nerve damage and other issues - no root cause in Brain & Nervous System

My first visit in Jan 2012 at Mayo Scottsdale was pretty intimidating but reassuring. It was like walking into a high-end hotel, with lobby piano player, modern architecture, and all the individual clinics. That’s just the clinic, they also have a full hospital located in north Phoenix. This is not your typical medical facility. I never felt better about my care as I have there. I have consoldated most all my care there and see a variety of different specialties. Their communication is excellent between specialists. I am fortunate to even have a local Mayo medical facility in my neighborhood where I see my primary care doctor with a full lab and radiology department. My condition has improved dramatically and I am happy and enjoying my life again.

May 6, 2016 · Nerve damage and other issues - no root cause in Brain & Nervous System

My first rheumotologist I saw 4 years ago, rated the best in state (AZ) many years running, wanted to start me on IVIG, but hit a wall with my insurance company. They required longer Rx treatments (cheaper) alternatives to be ruled out first. I had tried 4-5 different meds with little to no improvement. I had SED rates in the mid to high 90s and she couldn’t get them down low enough even taking 80mg of prednisone. I gained 70 lbs in 2 years. I couldn’t walk on my own, drive, or work (had to retire). 
I eventually changed insurance company and went to Mayo and the rheumotologist there put me on Cell Cept (mycophenalate) and Rituxamab infusions. My condition improved immensely. All my blood/urine work leveled off to normal and reduced my flare-ups. It’s been over 18 months. However, every time I change supplemental insurance companies, he has to write a special report to them why I need these medications before they would approve them, even though Medicare would. He’s had to do this 3 times already. I’m just waiting for the other shoe to drop when they won’t cover my special med at $700 a month and $12,000 per infusion.
You just have to be vigilant and hope and pray as I had to. There are doctors who care and insurance companies out there that will help where they can. I had to depend on my wife for everything. It took over 4 years, 40 plus doctors, dozens of ER visits, and 30 different meds before I finally have a semblance of a life.
Now I have 2 beautiful grandsons under 3 yrs old that I can enjoy my retirement years with little discomfort.