Hi All!
I'm new to this Forum thing so hopefully I'm doing it correctly. I hope I don't get too long here, I'll try to keep it short. (you can just read the last 3 paragraphs to get the just of my issues)
I started having issues starting approximately two years ago. It started as just a small issue so I went to an Urgent Care because I didn't have a GP. Anyway one thing lead to another and I had a blood draw. The doctor informed me to get a GP because he was showing that I was positive for RA factor test that he had checked. He said it was an Autoimmune disorder, either Lupus or RA. I also have been diagnosed with Raynaud's Syndrome.
Anyway after several additional blood draws and tests my new GP did say yes positive RA. He messed around with Naproxen at first with no help with pain, only now my pain was increasing and I could stand or walk for extended periods of time. My feet and ankles would swell up terribly, and I was getting a ache feeling up further in my legs and hips. My hands also swell up its difficult to make a fist because of the pain, stiffness and the swelling.
My Doctor tried Methotrexate with the gradual increase with no help. Finally after three months of me seeing him every couple of weeks he recommended a Rheumatologist.
The first time my Rheumatologist seen me he said you don't have RA... He did have me stop the Methotrexate. He ordered several more tests for Lupus, and other Autoimmune, and finally diagnosed me with Sjogrens. However I don't suffer from the typical dry eyes and mucus problems. My eyes might be a little dry, but nothing super bad.
My Rheumatologist continued to run more tests about every time I seen him. He also discovered that I had so sort of muscle disorder going on because of my elevated Adolase Levels. He tested my Adolase on four separate occasions and it came back elevated three of those times. The last time it was in the normal range but I had been on Prednisone for three days prior to him testing that time. I also was experiencing more fatigue and weakness. My swollen feet had somewhat subsided but now it had transitioned to a prickly numb feeling. It almost feels like I'm wearing downhill ski boots 24-7. The Rhuemy noticed that I had a foot drop, that I never even realized that I had. He did some strength tests on my feet and said that I had a pinched nerve in my back. He ordered a MRI and it did come back with some rather minor bulging and tears on my lower back, but nothing requiring surgery. He then ordered a EMG and it did show some Neuropathy (Nerve Damage). He prescribed a 5 day dose of higher Mg of Predisone I believe it was 400 Mg a day. Anyway that was almost like a miracle drug. It took care of probably 60 to 70% of my aches and pains. But of course he would not give me any more because of adverse side effects.
I have since had a ABI test because of great pain in my shins with walking distances to try to stay in shape. The pain hits after about a mile and then subsides if I stop for just a few minutes. I can than walk for my 3-4 miles like I like too. Anyway Doc thought it might be a vein issue, it was negative.
So this is where I'm at. I have been diagnosed with Sjogrens, Raynaud's, I have had minor bouts of Peripheral Arterial Occlusive disease. (My feet and legs turn blue) I have Neuropathy in my legs. I also have Myopathy (Muscle Disease) my Rhuemy says its a very odd type, that I may have to go to University of Michigan, or the Mayo Clinic for a real diagnosis. His thoughts are either a form of MS or Muscular Dystrophy. My thoughts are its all being caused by my Sjogrens. I am going to a Pain Clinic tomorrow for a Epidural injection for my Neuropathy. So ultimately they are just going to mask the cause. They have also prescribed Gabapentin and Nortriptylin for my nerve issues. with my side effects of weakness, no upper body strength, and extreme fatigue when I exert myself in the least. Nurse told me to reduce my dose back to twice a day instead of three times a day.
I am also thinking that I need to get a referral to see a Neurologist.
I am currently unemployed, I have been unable to work because of my inability to stand for extended periods, not to mention the brain fog that I seem to be experiencing. So I'm also struggling with the disability option.

Any advise or insight would be greatly appreciated.
Thanks!
MichBlueEagle