Welcome to NeuroTalk.

I have to really wonder when I see such a long list of problems and history of suffering, not being alleviated in some way.

I am going to recommend based on your osteoporosis comment, (which in younger patients is called osteopenia), that you may be very deficient in Vit D. Many people with chronic issues turn up on these boards and when tested have very low D levels.

Here is a new medical video on this:
http://neurotalk.psychcentral.com/thread92116.html

We even had a poster on PN here who had nerve problems in his upper back/shoulders that went away when he corrected is Vit D levels!
Here is http://www.grassrootshealth.net/

Also I'd get B12 measured. If you are below 400-500 reading you need supplements ASAP. Many doctors don't test for this and if they do they may say your are "normal", based on poor antequated lab ranges. The newer information on this is that you must be at 400-500 minimum to be considered "normal".
I have a B12 thread here:
http://neurotalk.psychcentral.com/thread85103.html

Fixing these two things may offer you some improvement, if they are indeed low.

Please visit our PN board, as there are members there with
complex inflammatory issues like yours.
http://neurotalk.psychcentral.com/forum20.html

THANK YOU!

This morning after sleeping pretty well last night I feel a little relief but I know it's going to get worse as the day goes on. I will definitely be calling the neuro on Monday and see if there's something I can do. I'm not in pain so I don't want to start the Cymbalta she prescribed. I don't want to take anything that needs tapering to get off and that has the side-effects most people report.

Well, I'm 52 in age and 25 in my brain.

I asked during the blood test and they said they were testing the B12.

I thought D was one of those vitamins that can be toxic in large amounts.

Also, another symptom from the Jan flare came up last night - when I let out my breath (like when you relax), the bottom of my lungs feels 'weird' (can't really explain the sensation-maybe tingling/burning/scratchy/irritating?) and I start dry coughing.

My various arthritis/costochondritis and related have been helped different meds. I guess I should have posted my med list:

Once a week:

• Enbrel injection (I administer for arthritis, costochondritis and related)
• Methotrexate 2.5 mg – eight tabs once a week (arthritis, costochondritis and related)
• Actonel 35mg once-a-week if I remember (osteoporosis)

Daily:

• Synthroid .175mcg – once a day (I have no thyroid)
• Lisinopril/HCTZ Tabs - one half tab daily (slightly high blood pressure)
• Hydroxychloroquine 200 mg –two daily (arthritis and related)
• Calcium with D 600 mg – two tabs once a day when I remember (osteoporosis)

The bolded drugs you take are connected in the literature to certain nutrient depletions.
Methotrexate depletes folic acid

Lisinopril depletes zinc
dry cough is associated with ACE inhibitors like lisinopril--it is a common side effect.

And HCTZ depletes
CoQ-10
magnesium
phosphorus
potassium
sodium
zinc

You do not say if you take any vitamins or minerals. Do you?
Besides the very low D and calicum?

Nutrient depletions are in a medical text which is now temporarily out of print. The data is available here at this link in abbreviated form:
http://www.chiro.org/nutrition/ABSTR...orticosteroids

The scary cough with the strange feeling deep in my lungs only started up when I got my first neuropathy flare (are they called flares?) and I didn't notice it until I tried to sleep. I ended up having to prop myself up on pillows to ease the sensation slightly. It's worse when I lie down or when I sit up/stand and actively push the air out of my lungs - that's when it shoots the tingles into my legs.

I was taking folic acid but I stopped about a year ago (my bad-I had forgotten it was to be taken to counteract the methotrexate) along with all my other supplements (fish oil, etc.) and many other OTC drugs because I was feeling 'weird', for a lack of any other term. I wanted to clear my system of everything to see if I felt better. I did feel better so I didn't go back to all the supplements.

Yesterday I started back on my vitamins:

• OTC B complex until the B50 arrives (b1-10mg, b2-10mg, niacin-10mg, b6-10mg, folic-100mcg, b12-10mcg, biotin-10mcg, pantothenic acid-10mg), calcium with D (1200mg cal/800IU D)
• folic acid (1mg + 28mg calcium/21mg phosphorus).
• multivitamin (A-3500IU, C-60mg, D-400IU, E-30IU, K-25mcg, B1-1.5mg, B2-1.7mg, niacin-20mg, B6-2mg, folic acid-400mcg, B12-6mcg, biotin-30mcg, pantothenic acid-10mg, calcium-162mg, iron-18mg, phosphorus-109mg, iodine-150mcg, magnesium-100mg, zinc-15mg, selenium 20mcg, copper-2mg, manganese-2mg, chromium-120mcg, molybdenum-75mcg, chloride-72mg, potassium-80mg, boron-150mcg, nickel-5mcg, silicon-2mg, vanadium-10mcg, marigold extract-5mg standardized to 250mcg lutein, lycopene 300mcg)
  

This morning I restarted my fish oil (1200mg) and vision protection (A-9650IU, C-195mg, E-95IU, zinc-34.8mg, copper-0.8mg, lutein blend-25mg)


I'm trying to be proactive while feeling so scared.

After a good-night's sleep the sensation from my upper thigh to knee is a little better, but I know it will get worse as the day progresses. My lower back is aching, too, which may be a good sign I'm getting a little feeling back in that area.



The cough I have now (which I didn't have yesterday) is from that funky feeling in the bottom of my lungs... This has come BACK after being on antibiotics for two weeks for a sinus infection. Yesterday was my first day off and I felt the beginnings of it. Now it's back full-force and breathing while relaxing into sleep brings it on. I can minimize the feeling by propping myself up to sleep but I'm supposed to keep my back flat due to my AS.