Originally Posted by b onna

I'm new and absolutely scared to death.

It would take forever at this moment to go into everything that's happened to me since December 3th (lots of health, cigarette smoke poisoning, stress/anxiety, no sleep, housing/moving issues) but on Monday, February 22 I was diagnosed with both small fiber neuropathy and large fiber neuropathy.

I didn't realize it but back on January 15th this first flared up after feeling a pop in my back while packing some stuff for the move. I thought the pain shooting down my legs and around my wrists was Prednisone-related since I was tapering. Sometimes I didn't sleep for three days straight and if I DID sleep, it was for no more than two hours and only if I piled pillows all around my body to support me and tilt my head a certain way because my throat would close up as I would start to relax and send shooting pain into my legs. I had twitches on my face a few nights, too. Even my privates were affected - I was half-numb on one side. I couldn't get enough to drink - always thirsty. I've lost over 20 lbs. I was and still am unable to eat.

The shooting pain went away (just leaving my tingling toes I've had for over a year) after we moved and settled in. I still couldn't eat in the morning but I had a relatively healthy appetite in the evenings again. I had a little numbish place on my back by my right shoulderblade but didn't think too much about it.

Then two weeks later on January 16th something stressful came up (lack of money to purchase a house) and my lower back and tailbone started screaming at me and tingling shooting pain in my feet and legs started again. I had to lie down on my back with my legs at a 90 degree angle and still didn't get any sleep that night.

I got an immediate appointment with my back doctor but he couldn't help me due to the tingling because he was an orthopedic surgeon and said to find a neurologist. After limping around in pain that morning to different doctor offices I was finally able to get an appointment with a new neurologist for the following Monday. I hadn't been to my old one for so long I was considered a new patient and couldn't see him for a month. I spent the rest of the week and weekend feeling horrible.

I had a follow-up appt with my rheumologist on Friday who said I had PTSD due to everything I had already been through with health/housing and gave me a small dose of Xanax to take at night so I could sleep.

Couldn't eat and my mouth was so dry that taking medication sometimes made me choke so much I'd throw up.

Monday, February 22 I was diagnosed with both small fiber neuropathy and large fiber neuropathy. I did a lot of research but hadn't found this great place yet.

Wednesday I had the biopsy and my right temple started getting Glove and Stocking Sensation.

Thursday I had the EMG/NCS and the neuro said it was worse than she thought. She hasn't looked at my MRI yet. By the end of the day the Glove and Stocking Sensation had crept across my brow to the other temple and down into both sides of my jaw.

Until I had the EMG, all I had was tingling in my toes. My back was supposedly feeling better because it just ached.

Had the neuropathy bloodwork done Friday. Now I have to sit and wait.

Starting Friday 2/26, my toes stopped tingling. I felt the Glove and Stocking Sensation around my right ankle. I became afraid that the reason why my back wasn't hurting was because it was numb. My wrists were numb again. Last night I choked on a calcium pill and lost a lot of my dinner, which was the most I'd eaten that day.

Today, Saturday February 27th, I have felt my lower body become progressively numb by the hour, starting at my right ankle and slowly crawling up my leg so now it's in my upper thigh. My back has made popping noises throughout the day as I've moved and those seem to trigger some of these losses. When I take a deep breath it sends a ripple of tingles down my legs. I'm trying to take deep breaths to relieve stress.

I am SO SCARED I'm going to feel like this forever and that it's only going to get worse. I don't want to be numb from the waist-down!

I can only pray this is related to my Ankylosing Spondylitis and my curved back and that I can eventually get a lot of feeling back.

I signed on here and have read a lot already. I've ordered Methyl B-12, B complex 50 and p5p in the recommended doses from iherb.com.

I hope some of you can give me some advise and support. While I go through bouts of being upset and frustrated, I am also determined to not let this get me down and to overcome it like I've overcome all the other health problems I deal with on a daily basis. However, this one REALLY frightens me since it is affecting me so quickly and ruthlessly.

I currently work full-time at a community college that doesn't take out Social Security but does Teacher Retirement. I HAVE to work to help pay rent and bills. My husband is a loving dear but recently he retreats to another room and I know it's because he can't stand seeing me suffering.

Call me onna. I hate my real name. onna is Japanese for woman. No, I'm not Japanese but love anime and manga and in the past have taught a class on anime and manga art and helping students use the techniques for their own characters. Sadly, I had to cancel my class this Spring due to the move, which meant I lost that extra income. I guess it was a good thing since my health has now cratered so badly and so quickly.

Okay, I'll stop with the novel.




P.S.

What is already wrong with me:

1. Ankylosing Spondylitis - flares periodically and never predictably
2. Permanent Costochondritis in ribcage - gets better between flares but can go out on its own depending on exercise
3. Carpal Tunnel Syndrome - comes and goes depending on how much computer work I do and periodic flares
4. Tardy Ulna Palsy - have to watch leaning on my elbows
5. Myofascial Syndrome in both arms and chest along the ribcage - comes and goes, especially during flares
6. Sciatica on both sides now, but mostly on the left - comes and goes
7. Pinched nerve in left shoulder (got better)
8. Periodic Tendonitis and Bursitis - comes and goes, sometimes with flares, sometimes when just moving
9. Osteoporosis (bones of an 85 yr old)
10. Damaged ACL in left knee (never operated on so it's still tricky) - never know when it will go out from stepping 'wrong'
11. Sjogren's Syndrome - comes and goes
12. TMJ - comes and goes so I have to pop it back
13. Back is curved back more than usual, which compresses my lower disk (had a recent MRI with orthopedic surgeon to prove this)
14. Recurring Bronchitis (if I cough I flare my costochondritis and sometimes my arthritis then I get bronchitis)
15. Recurring sinus problems - coughing is bad for me
16. Fragile lungs due to cigarette smoke poisoning and bug spray poisoning in December 2009 and January 2010
17. On 2/17/10 diagnosed with Post-Traumatic Stress Disorder due to a series of stressful/traumatic events which began December 6, 2009 and had presumably ended February 1, 2010.


If you want to read about what all's been going on with me, I've blogged it. Yeah, that's why I have accurate dates. You have to start in December and read from the bottom to the top: ** edit **
The monthly archives can be found on the right side panels.

Originally Posted by mrsD

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

Originally Posted by b onna

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)

Originally Posted by mrsD

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

Originally Posted by b onna

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 (Sunday) 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.