New PNer - Scared

b onna · 02-28-2010, 07:56 PM

All right - I posted this at the intro thread but I'm going to do it here, too since this is the place it really needs to be. The incredibly amazing mrsD has already been so HELPFUL and I've spent all day doing research here on supplements, making notes and planning my budget for all these pills.

Quote:

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.

Quote:

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

Quote:

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)

Quote:

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

Quote:

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.

So now you have more of what's been told to me initially.

I hope to learn a lot more from you, not only about health but how to deal with this emotionally, physically and mentally. I've been able to get back on my feet from all those other things listed above but this one doesn't look like it's going to be something I'll be able to get back on my feet and reasonably functional again.

So while I'm determined to try to keep myself positive as much as possible, I'm really scared.

My fingers have become stiffer for the first time ever today, and my hands are tingling.

Thank you in advance for your help and encouragement.

dahlek · 02-28-2010, 08:50 PM

How you address the fears is a whole different kettle of fish...so to speak.
I went on and got second and third opinions from regional docs while I could still 'get there'? And also before IT'd done too much damage, as my initial neuro disregarded all my concerns almost from the 'get go'. I've had this all since '2003' and I truly wish it'd go away! {I've CIDP, btw. Tho the neuro writes down new 'takes' on the diagnosis -all requiring the same treatments, but - still keeps me on-guard?}
That 'pop' in the back is truly something that should be COMPLETELY explored? Honestly? It could be one, or the other, or both! Nothing is exclusive with the human body!.... Spinal MRI's w/and w/o contrast should be done, as well as both complete blood panels and metabolic panels. AND BE SURE TO ASK FOR COPIES! I go directly to the lab to get the blood work done and there I ask for copies so's the lab doesn't have to send them to my dozen plus docs...I get and make copies of the test results and pay attention to the '*' asterisks and the near asterisks - the hi's and lows... Beware of Vitamin B-6? Please. That's a supplement that's often tossed into other ones and it can add up...{I'd thot I was supplementing myself well, until I really looked closely at the labels-found I was getting 6 times the normal requirement for B-6 ....which can cause neuropathies itself? Switched to a pre-natal multi-vite which has lots of what I want and need, and added on to that as needed. Mrs D is one special and valuable resource to ask questions of? But remember, that she can't prescribe you any particular course of things to take? She reccommends and with solid back up! The choices of what you take, how and when are yours tho..
I too have 'no thyroid' and it was one mess getting to know about that! Do read CAREFULLY The prescribing directions about taking synthroid and calcium supplements...,it can get complicated? IF you're chugging all your AM pills in the AM? Including the Synthroid and Calcium? You gotta read about this? It's a no-no and makes taking lots of other stuff more complex.
I too have osteo [BIG time] And I've found that even knowledge too late can help? But the knowing SOONER is far far better!

's and hope - j

PS HANG IN THERE! You are NOT the only ONE! Keep faith in yourself and fight for ALL the right diagnoses! I say this as I've gotten more diagnoses than I can spit on since my 'onset'. I truly didn't do anything to 'get' them? Just the luck of the draw and an immune system that went 'TILT' I believe you get my drift... Keep FAITH! Ask questions, no matter how silly, sometimes, those are the key's to it all!

b onna · 03-01-2010, 12:21 AM

Quote:

Originally Posted by dahlek

How you address the fears is a whole different kettle of fish...so to speak.
I went on and got second and third opinions from regional docs while I could still 'get there'? And also before IT'd done too much damage, as my initial neuro disregarded all my concerns almost from the 'get go'. I've had this all since '2003' and I truly wish it'd go away! {I've CIDP, btw. Tho the neuro writes down new 'takes' on the diagnosis -all requiring the same treatments, but - still keeps me on-guard?}
That 'pop' in the back is truly something that should be COMPLETELY explored? Honestly? It could be one, or the other, or both! Nothing is exclusive with the human body!.... Spinal MRI's w/and w/o contrast should be done, as well as both complete blood panels and metabolic panels. AND BE SURE TO ASK FOR COPIES! I go directly to the lab to get the blood work done and there I ask for copies so's the lab doesn't have to send them to my dozen plus docs...I get and make copies of the test results and pay attention to the '*' asterisks and the near asterisks - the hi's and lows... Beware of Vitamin B-6? Please. That's a supplement that's often tossed into other ones and it can add up...{I'd thot I was supplementing myself well, until I really looked closely at the labels-found I was getting 6 times the normal requirement for B-6 ....which can cause neuropathies itself? Switched to a pre-natal multi-vite which has lots of what I want and need, and added on to that as needed. Mrs D is one special and valuable resource to ask questions of? But remember, that she can't prescribe you any particular course of things to take? She reccommends and with solid back up! The choices of what you take, how and when are yours tho..
I too have 'no thyroid' and it was one mess getting to know about that! Do read CAREFULLY The prescribing directions about taking synthroid and calcium supplements...,it can get complicated? IF you're chugging all your AM pills in the AM? Including the Synthroid and Calcium? You gotta read about this? It's a no-no and makes taking lots of other stuff more complex.
I too have osteo [BIG time] And I've found that even knowledge too late can help? But the knowing SOONER is far far better!

's and hope - j

PS HANG IN THERE! You are NOT the only ONE! Keep faith in yourself and fight for ALL the right diagnoses! I say this as I've gotten more diagnoses than I can spit on since my 'onset'. I truly didn't do anything to 'get' them? Just the luck of the draw and an immune system that went 'TILT' I believe you get my drift... Keep FAITH! Ask questions, no matter how silly, sometimes, those are the key's to it all!

First, THANK YOU for your support!

I had an MRI w/contrast done back in Sept by the ortho surgeon who sent me to therapy/traction for two months. It really helped and I continued to do my stretches until just recently when we had serious housing issues.

However, I finished my series of stretches an hour ago and my right leg has gone more numb. AND the numbness has moved up into my crotch/bladder area and I am even more scared now. I don't know if I should go to the ER, but the only thing they'd probably do is another MRI with the new problem and tell me to see my neurologist asap. I really can't afford the price of ER.

I haven't gotten another one for the neurologist (I am praying this is all related to my back so I'll get better) but I was able to get through to her assistant's phone tonight and left a message on how it has gotten worse so quickly this weekend. I'll call again tomorrow to follow-up. I know they're tired of hearing from me (I've called them every day), especially since the tests haven't made it back yet but since I'm getting worse so quickly maybe they can find a way to expedite everything and also get me an appointment ASAP instead of waiting two weeks.

I am not really in that much pain, so I am avoiding starting the Cymbalta she prescribed. I took a muscle relaxer and will take a low dose Xanax before bed.

Too much B6 can cause neuropathies? Can't win for losing.

I know I will start the B12 as soon as it arrives.

Looks like I need to check out Vit D and magnesium, too.

Yes, I'll check my D levels with one of my doctors before starting to megadose it. But the little bit of D I'm getting now from my flimsy multivitamin is better than what I was getting before, which was nothing. Remember - I haven't been able to stomach eating. Today was the first day I felt like eating something before 11am and I actually craved and ate something substantial at 3pm and had a snack for dinner. I thought that was a signal I was getting better, especially since I was feeling better, then I pulled myself out with my stretches. Is there a smilie for cursing?

My head is spinning from all this supplement stuff. I keep reading more and more and now I'm overwhelmed as to what to take, amounts and when. I know everyone is different and has different body needs but I need to know if just starting with B12 will be beneficial then add more as I can.

I didn't know about calcium and synthroid until I read something about it here TODAY! Need to wait three hours before or after the synthroid to take calcium, right? I'll just adjust it to switch one to the evening.

I'll start asking for copies of the blood work more often. I do it sometimes.

The spine popping has slowly travelled up my spine as more and more parts become numb. It started in my lower back and each time the bone popping has moved up.

I'd write more but my hands are becoming more and more affected.

THANK YOU so much for your response and info!

I'll try to hold on. I HAVE to - I go to work tomorrow morning and I must continue to work so I can afford all this!

lesley21 · 03-01-2010, 12:48 AM

Hi Onna, I am new to this community as well, everyone has been very helpfull to me, so I think this is the right place to be. I have learnt so much already. I had not even heard of the word peripheral neuropathy 6 weeks ago and am now look up everthing I can to try to beat this thing. Hope everything goes alright for you.

Lesley

b onna · 03-01-2010, 01:09 AM

Quote:

Originally Posted by lesley21

Hi Onna, I am new to this community as well, everyone has been very helpfull to me, so I think this is the right place to be. I have learnt so much already. I had not even heard of the word peripheral neuropathy 6 weeks ago and am now look up everthing I can to try to beat this thing. Hope everything goes alright for you.

Lesley

I only heard the term peripheral neuropathy a week ago!

Yes, everyone is very helpful.

I hope things work out for YOU, too!

Thanks for friending. I need some friends here and I GREATLY appreciate your support.

glenntaj · 03-01-2010, 08:25 AM

--that this most recent situation that's ongoing, stemming from that back "pop", is not a peripheral neuropathy, but a spinal cord problem, possibly also affecting the proximal spinal nerve roots (which would give it a bit of a peripheral dimension--each nerve root ennervates a specific area of the body, and often one can tell which roots may be involved by examining the locatin of symptoms--but spinal cord impact can affect any body area at the level of lesion or below, and the symptoms can be exactly the same as those of a more peripheral problem, which is why it's often difficult to tease out exactly what's wrong and where).

With all the conditions you've listed, and all the meds you're on, I wonder to what extent you may have some symptoms that are med-caused. It seems as if you've been prescribed things not only for conditions, but also for side effects for other meds. You're likely one very big chemistry experiment; and it's difficult to know what's causing what with all those possible interactive combinations.

I'm not a doctor, but I'm suspicious of a lot of those diagnostic labels that you've been given. It's not that people can't have multiple conditions--they certainly can--but I sense there hasn't been a lot of coordination of testing and investigation among your various doctors. I wonder if you'd be better off fidning a good doc, no matter the specialty (orthopedic, neurologic, endocrinologic, rheumatoloigc . . .) who is interested in investigation (I know, easier said than done) and sort of start a "from scratch" examination to try to get to the bottom of this. Personally, given your ankylosing spondylitis, and other symptoms you've described, I suspect really good MRI's would reveal more global spine problems with nerve root and/or cord compression, and much of it might stem from more global autoimmune issues. Can't say for certain, but I'm getting the impression that the autoimmune tests you've been given may have only scratched the surface (have they tested you for anit-neuronal antibodies? Celiac/gluten sensitivity? Anti-purkinje antibodies?).

I'd like to recommend the Liza Jane spreadhseets:

www.lizajane.org

--which were put together to be as comprehensive a guide to test for neurolgoical symptoms as we could research and think of; also very useful to track test results over time and suggest tests that many doctors may not think of.

amit · 03-01-2010, 11:22 AM

You have to check for Gulian Baree. The progression is so rapid that I would think about GBS.

Mere · 03-01-2010, 07:41 PM

I am afraid I have to agree with glenntaj in that all the meds you are taking could be causing some of your physical problems.

Have you had medical confirmation of ankyloid spondylosis? I am assuming you are female and it is very rare in females. Have you also been diagnosed with Sjogrens syndrome - it does not usually 'come and go'.

Are you taking Embril, methotrexate and Plaquenil all at the same time? Methotrexate alone nearly did my liver in. It took years to heal. Do you take folic acid right along with it? Taking all three DMARDS at a time is triple-dosing. Occasionally, Rheumys will rx a small dosage of MT with Embril but only in the more serious cases. Please correct me (anyone) if I am wrong about this but these are very serious drugs. I wish I could scratch the DMARD off my list...

Do you have a set of doctors that you use on a regular basis. In any case, are they aware of your med list. I am finding over the years that "less is best". I have a lot of medical problems, but i try to keep the drug list to as much of a minimum as possible.

You mention 'cigarette smoke poisoning and bug spray poisoning'. Are you kidding? I would be way more concerned with the intake of meds and the long list of 'diagnosis' if this was my hx.

I don't mean to sound rude but I only speak out of concern when I say that your priorities should lie in the current state of your existing problems. And, you can tell me to mind my own beeswax...

Mere

dahlek · 03-01-2010, 08:06 PM

I suggest you take a look at ALL the meds you're taking and web up the 'Med One -Full prescribing information' all down the lists! There is a slew of deliberately confusing info about each med BUT common and less common side effects MUST be listed! READ THEM, MEMORIZE THEM, Make a chart on them! You might just be surprised that Med A is working against Med B if not taken properly or simply being taken together in the same human! Why do you think there are soo many meds? Because some don't work for all.
At one time, I was on at least 10 prescribed meds and a slew of supplements ... they did NOT work in concert-not at all.
Keep in mind that meds are created to help us? And they can and do at times, but at other times they come with a cost. Docs don't know the minute details of these things...and they shouldn't but for the most basic of cautions and interactions... often tho? Some don't pay attention or know enuf about your thyroid med affecting your allergy med etc..and on and on.
As for anything neuro for diagnosis? In addition to Liza Jane's lists in the stickies, READ THEM PLEASE! There are two others you should take a peek at before your brain freezes over?
http://www.aafp.org/afp/980215ap/poncelet.html AND..THIS IS ON JUST NEUROPATHY DIAGNOSTICS?
And this: http://neuromuscular.wustl.edu/alfindex.htm Take a peek under N for neuropathy or PN for Peripheral Neuropathy.... Explore the whole universe of what is only a portion of what is Neurologic! We don't easily fit into neat square boxes. Nor should we, as each of us IS different. But this all is squirrelley stuff!
Only thing I've got to ask, is...did you have a bad cold or flu a while before coming down with this stuff? And, were you on antibiotics? If you can't remember? Call your insurance co or your pharmacy about getting copies of your prescription records - that could help you and future docs in getting a diagnosis.
You seem to have a lot of things going on..if and how they mite be related is of no issue now? You have to go thru the whole diagnosis mill for spinal, nerve and immune issues if any to get the ultimate treatment you will need to keep on going. Gotta admit? Your 'list' is longer than mine!
It's not easy? But it can and must be done.. You want your life back, I understand and others here as well? All too well! We're all working on it!

Keep faith and keep your cool in any doc's office...never ever let them 'tell you'? 'IT's ALL IN YOUR HEAD!' It's Not and we've been where you are to varying degrees and understand that well. Just learn all you can about the varied diagnoses and keep any doc on their toes by knowing as much as a mere-non-medical-mortal can..and ASK Key questions...What about this [not treatment-more diagnosis] and work your way down the 'list' I am sure you have rite now? Keep to the BIG ISSUES tho, once you've got a doc you can work with? You can get down to the 'details'....

Keep faith in yourself...You are key to the total equation, and only YOU can know what will 'fit' for your problems. - j

Mere · 03-01-2010, 08:26 PM

Perhaps I am a bit harsh... I know it's tough to be ill. The last thing I want to do is increase your stress level. I am concerned about the DMARDS though. They created a terrible mess for me. I have been through them all and Humira (is similar to Embril) works for me with minimal side effect. I have spondylarthropathy and connective tissue disease, so I understand your dilemma in that regard. It just plain hurts without them and costocondritis is the worse!

I am also waiting for lab results. I was diagnosed with small fiber neuropathy through skin biopsy. But the lab studies; it has been going on four weeks now!!! Long enough.

Hope you have a restful night,

Mere.

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I am scared	Mrs. Bear	Bipolar Disorder	16	02-05-2008 04:22 PM
New and scared	daisy mae	New Member Introductions	5	01-18-2008 05:21 PM

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