Newbie Help! Any of my weird symptoms sound familiar???

[JJ]

Happy Birthday A....I'm sorry that is going to be a rough day for you, and I'm sorry I couldn't be

any help. However, I do wish you the best and hope that this issue with your feet gets taken care

of fast. The only other suggestion if you haven't already tried it is Epsom salt foot bath...something

about the salts that helped my Grandfather but I couldn't tell you what was wrong with his feet

other than arthritis....I just remember my Grandmother preparing it for him before bed.

JJ

[Avalanche]

Hey JJ

Thanks for the Bday wishes- I tried the new drug last night- good news was that I really slept, didn't wake up sweaty , but the bad news is I couldn't get up til 10.   Am just taking it easy.
Forget the no-wheat diet right now, hubby got me the best chocolate ganache cake on the planet- you can be sure I am eating as much of that as I want, then they can put me on any diet they want. Oh and steak and wine, too. And Hawaiian music. That will make for a pleasant day.
Aloha
A

[JJ]

Very happy for you!!! Turned out to be pretty good after all.
Hope it just keeps getting better!!

JJ

[Katybarstool]

Have a wonderful birthday A. Would love a slice of that cake!

Kathyx

[irish]

Avalanche, You sure got hit by a truck didn't you. Most people start out slowly and work their way up the ladder with the symptoms. I know I was about 20 or so when all mine started and I had problems all my life. Got diagnosed when I was 60 and I am 66 now.

One thing I am surprised at is that no one has put you on the gabapentin or neurontin. You can start this med at a very low dose. My hubby takes 200 mgm am and noon and one tab at bedtime for his neuopathy and cramps in his lower legs.I have a friend with sjogrens and diabetes with bad neuropathy and she is on 2500 mgm of neurontin every day. If the amitriptyline bothers you the neurontin is a very workable drug. Sounds like you were given something to help you sleep so that is good. I have great reservations about the Tylenol PM as it contains the benedryl which can cause so many issues if taken long term. My hubby gets GERD really bad from the Benedryl as it causes the muscle/sphincter at the top of the stomach to relax causing stomach contents to reflux.

Don't give up yet cause you haven't even found out what you have. You will have to make a different life style while you shop for doctors and a diagnosis. This is another chapter in your life and how you get through it is up to you. I don't mean to sound hard core, but the hard times in life are what make us grow in so many areas.

You will have to keep on your qwest for a diagnosis and it really is a hard job. Make sure to keep track of all the visits and keep notes of who told you what and what tests were done. It gets to be a real nightmare cause the days and the doctors run together. Also make sure that you do have your thyroid checked because you would not believe how ill an out of whack thyroid can make you. It can cause arthritis and aching joints, etc.

There is a good doc at John Hopkins, Dr. Julius Birmbaum -- he comes on this site at times. He has started a sjogrens clinic and deals with neuro problems of sjogrens. He would be a good doc to see also as he would know which direction to send you for more testing. The thing that is so confusing with the autoimmune disease is that so many of the symptoms over lap from one disease to the other. I got diagnosed with sjogrens in 2003 and then in 2006 I was diagnosed with myasthenia gravis,(turns out probably had it 40 years) hashimotos, and severely low t-cells of unknown origen but possibly inherited. I also had asthma and bullous pemphigoid which are also autoimmune. I was floored about the MG and the t-cells.

We just have to take it as it comes. Life will change for you but as time goes by you will get more input from doctors and get more help. The good thing is you have a positive ANA. You have autoimmune and somebody will figure out that you need to be put on prednisone, plaquenil or some other drug. The docs don't like to start the stronger meds too soon as they like to be able to have a pretty clear idea of what is wrong first.There are more and more people being diagnosed with autoimmune diseases and nobody knows why, but probably it is from all the chemicals in the world. My theory at least.

Please just come here and vent and let us know how things are going. This is a great place for help and support and also for information. Irish