Newbie w/Autoimmune SFN
 

I'm still in shock over this and found this forum searching for answers. Please excuse my rambling as I wasn't prepared enough for this.

Just got the call this evening from the neuro's office. My tests were back in December. I was told I have small fiber neuropathy, autoimmune, proablably scleroderma. Well, I do have morphea scleroderma, positive ANA with a titier of 1.7. This has been going on for several years, and several doctors to find it. I lost my job in Feb 08, as well as health insurance. Husbands income a little too high for state aid, but did find Cleveland Clinic has programs. Went to my primary in Sept. and he sent me to the neurologist. All types of labs, and EMG, QSART, Tilt Table and punch biopsies.

He wants me to start IV gamma globulin - once a month. No insurance and I don't know yet what I qualify for. It could take another few months to find out and I've read it's very expensive. Don't know what to do here.

The pain/burning in my feet started around 2002ish... my rhuem at the time told me I had a systemic variant of scleroderma and all tests and treatments were geard towards that for roughly 4 years. Got undiagnosed by a sclero specialist at Cleveland Clinic 2005. Dummy me stayed with her for a few more years until she was too busy to see my when I had pnuemonia.

My neuropathy has progressed over the last 6 years (at least that I can tell) to my hands & forearms, with sensory loss and numbness in my ankles, but also involves my digestion, my BP, and "relations" with my husband.

These are questions for my neuro, but am posting here because you've been there. My concerns are:
1. What are my long term expectations? (Since it's A.I. it will progress.)
2. Since it's been 6 years and it's that involved, will I regain any of it with IVGg therapy?
3. What will happen if I can't get the IVGg therapy? A wheelchair in my future?
4. I'm a Graphic Designer by trade, too much time/typing on computer cause my hands to feel like they're run through broken glass and mashed with a mallet - will I be able to work again?

Anything anyone can share is greatly appreciated. I'm scared about this, even though I'm happy IT finally has a name!

Thanks in advance!
dmouse

I don't have answers for you, because I am a newbie too for SFN, but I want to welcome you on the board and wish you all the best with your health.

I cannot really answer any of those, since I have only had mine since 2007, but at least you have a diagnosis. If I were you I would do anything that I can to start on IVIG - chances are high that it will help since it is autoimmune. If you don't start on some kind of immune therapy, it might keep progressing.
Did they try other things like steroids?

I am also a graphic designer and so far my hands aren't that bad, but my main fear is loosing use of my hands due to pain or motor problems.
Can't imagine the kind of pain you have in your hands that makes you unable to do the work. I suppose you tried neurontin and other nerve pain medication and it didn't help?

Good luck

They haven't tried any other meds/treatments. IVGg was the only thing offered.
My sister has MS and SFN and she told me they should have done a spinal tap and MRI before they decided on a treatment plan and that I should refuse IVGg. As I understand it they assume it's from my scleroderma. I have the positive ANA, but no patterns were positive. All my labs were normal, except elevated B12 and elevated ANA.
I don't know what to think.
Thanks for the input.

dmouse

Elevated B12?
 

I've never heard of anyone with elevated B12. Usually the B12 is either normal or too low. Believe me when I say most doctors have no clue about the correct way to read B12. Could you post your B12 number.

I also have autoimmune neuropathy. I have SFSN from Sjogren's Syndrome and Rheumatoid Arthritis. I've had it since 2003 after I had bi-lateral knee replacements. I have never been offered IVIG. I am maintained on methotrexate and Humira. Methotrexate stopped my neuropathy. No... it didn't stop the pain but it seems to keep it under pretty good control. At least it isn't advancing rapidly. As long as I keep my sugar consumption down, take all my supplements and keep moving, I get along pretty well.

Yes, there are times that I am in more pain but I still have my hands.
I'm a jewelry designer and artist. My hands are important to me. Please read the stickies at the top of the page. You have a lot to learn. This forum is chock full of the smartest people I've encountered. Also, check out www.lizajane.org for diagnostic tools.

Good luck,
Billye

Here is what the lab wrote: Vitamin B12 - 710 (H) (lab range 221-700pg/mL)
I don't know enough about it myself.

Does anyone here have solutions/remedies for the itch? I feel like I'm going crazy from it! It wakes me in the middle of the night, I've got deep scratches on my arms and legs... I thought it might be a food allergy to eggs, but I haven't had eggs or chicken since sunday, and my itch that was gone has come back today so I have to assume it's from the SFN? (It's not from lymphoma, I just had CT scans to check for that.)

I looked through some of the stickies, but I'm raising my 3 yr old granddaughter so don't have a lot of free time. It will take me a little while to get through it.
Thanks!
dmouse

that B12 if fine, and could even be higher.....they should check your methylmalonic acid level, to see if that B12 level is even "honest"...there should not be an upper level on the B12 test......If you had ins i would tell you to get a second opinion from a doc who was not aware of your previous dx.....if you can work at all, can you trade services in some way?

Hi there dmouse. Unfortunately I don't have an answer for you, but may I suggest that you address your question to our resident medication expert, mrsD?

If you post in the Medication Forum, and she sees your post, she might have an answer for you.

Here's the link that you need: http://neurotalk.psychcentral.com/forum72.html

Good luck.

Agree with pabb--
 

--your B12 level is not high by most lab ranges--in fact, most of us here would consider that level barely adequate; we like to keep our B12 levels in the four figures, so there's plenty for our bodies to use for metabolic and neuroprotective purposes. (What lab had that range, anyway? Many of us tend to think the lab ranges in the US are too low--in Europe and Japan most lab ranges start at 500/550 and have no upper limit . . .)

B12 has no known toxicity level--there are studies from Japan in which people took up to 36mg/day intravenously with no side effects other than a bit of hyperness/invreased energy. (The USDA minimum requirement is 2mcg/day, thousands of times lower; those of us who are older or who suspect we may have absorption problems like to flood our bodies with at least 1000mcg or 1mg/day, so that we are assured of at least some getting to us by passive absorption--we don't rely on the presence of intrinsic factor to break B12 our of food in our stomachs.)

many patients
 

With scleroderma many patients use Nexium or a similar drug for GERD. Are you using this?

Severe itching can be due to many things. Reactions to drugs,
gall bladder/liver disease, allergies, eczema, etc.

If you list your drugs here (or PM me for privacy) I'll check them out for you. Drug nutrient depletions are a big cause of side effects.

Also, gluten intolerance does cause skin problems, and I'd check to see if you have that too. It will cause neuropathies too.
http://jccglutenfree.googlepages.com/
The Gluten File website has alot of information that may be useful to you.

Thank you everyone for helping me understand! I really do appreciate your time!

MrsD - I don't take much of anything as far as medications go. My old rheumy tried putting me on so many different things for my "CREST" but I hate taking meds. Would rather try homeopathic, or just deal with it. For my stomach I take an occasional Pepcid AC - OTC. I have a small hiatal hernia, no ulcers, minor thickening of the esophagus from GERD. I do get a pressure under/behind my right rib but CT scans, a Hida scan & labs all say organs are normal. They can't figure it out. The gastro prescribed Omeprazol 20 mg - 2 at bedtime but I don't take it because side effects are headache, nausea, diarrhea, belly pain...
When the itch is just way too much, I take a single Benadryal at bedtime, but not every night. For occasional sinus headache/pressure I'll take an advil cold and sinus - but it's very rare - maybe 2-3 a month?
When my energy level is really low, I'll take a B 100 Complex. Sometimes I'll take 2, spaced a few hours apart.
I don't eat McD's, BK, or any of that garbage, but I'm not big on many veggies. I was taking the B Complex 2x daily when I was employed, along with Vits A & E, Calcium/Magnesium and potassium. I kept it up for a few weeks after I lost the job, but grand-daughter has gotten me distracted enough that I fell out of the habit. All that did help with the energy, but not much else.

I use Dreft for all my laundry, including bedding and towels, Basis all natural soap for showers. I avoid all perfumed lotions and soaps.

I also have what they've termed a multinodular goiter, but all my levels are "normal" and I don't have the TPO antibodies. They are keeping an eye on the solid, dominant nodule, but it hasn't grown in over a year.

I hope that helps fill in the gaps. Again, thanks for helping me understand!
dmouse

Please could you explain the...
 

Goiter? Where and what endocrine glands are involved? That could tell me which sources to refer you to for the 'heavy reading' of sorts.
As for access to IVIG? Take a look at the web site for IG Living, it's a specialty magazine and sign on for free to all prior issues of their magazine. In addition, I can tell you that they've worked with many folks in your situation to try and get aid thru manufacturers and other providers to you could have treatments. While they mite not get back to an e-mail from you right away? They DO get back to you and can help you try and work things out. I have been on IVIG for over 4 years and I can tell you that because of it, I am still mobile and can think clearly, even with some pain. That is a lot to be said given all we go through.
As for an 'excess' of B -12? Never heard of such a thing! Overages of it are like Vitamin C, they just go thru you and out! No harm or foul, ever. B-6 tho is another issue [too much of the B-6 can add to PN issues, I suffered this aspect and changed my regimin a lot because of it] and GOOD metabolic bloodwork should give you a more solid indication of your ranges. Later I'll post some resources about blood tests and results in this quarter.
Also about some autoimmune disease diagnostic procedures....tho nearly all are posted on Liza Janes' website. It will take a while to get acquainted with all the tech and doc speak that goes with the territory tho... But knowing it all is ESSENTIAL for you to get a handle on what is going on!
As for dealing with your sister? Thats a sticky one, for sure. While treatments for MS are at times, similar to PN issues? They are often different and IVIG, Plasmaphersis and steroids are the NORMAL treatments for immune types..... plus pain killers. And, I consider MS and immune PN's sort of distant cousins as they both demeyelinate those danged nerves! Go your own way the best you can here.
While I would like to not have to take some meds? They are essential for being a functional human being at times. I do the minimal possible when really necessary. We do what we have to..to get by!
Enough for now, please don't be shy to ask questions! - j

I can't say thank you enough for helping me understand, and for being patient with me!:)

So sorry for the length of this post, but these are all the labs blood/urine the neuro ordered plus the thyroid labs my primary ordered. The only lab missing is cryoglobulin - that will come with the rest of my results. I thought it was a pretty comprehensive work-up. Did they miss anything?

As to the thyroid - I have several small cysts < .5mm and one solid (was complex till FNA), dominant 1.2 cm nodule. As far as I know - none of my glands are involved. I even just had CT scans of head, neck and chest with and w/o contrast and all was normal.

Thyroid Labs 9-30-08
TSH 1.69 uU/mL, T3 108 ng/dL, T4 7.0 ug/dL, Free T4 1.4 ng/dL, Free T4 Index 6.5, T4 Uptake 1.07

Labs 12/02/08
Test – my value - (ref value)

WBC - 8.4 (4.0-11.0 k/uL)
RBC - 4.59 (4.2-5.4 M/uL)
HGB - 15.1 (12.0-16.0 g/dL)
HCT - 44.1 (37-47%)
MCV - 96.1 (80-100 fL)
MCH - 32.9 (27-34 pG)
MCHC - 34.2 (32-36 g/dL)
PLT - 235 (150-400 k/uL)
RDW-CV - 12.6 (11.7-15.0%)
MPV - 11.6 (H) (7.3-11.1 fL)

Neutrophil - 58.7 (40-70%)
Abs Neutrophil - 9.93 (1.8-7.7 K/uL)
Lymphocyte - 28.6 (22-44%)
Abs Lymphocyte - 2.40 (1.0-4.0 k/uL)
Monocyte - 7.9 (H) (0-7.0%)
Abs Monocyte - .66 (0-.08 K/uL)
Eosinophil - 3.8 (0-4%)
Abs Eosinophil - .32 (0-0.4 k/uL)
Basophil - 1.0 (0-1%)
Abs Basophil - .08 (0-0.2 K/uL)

SM Antibody - <0.2 (low:<1.0 AI)
ANA by EIA - 1.7 (H) (low: <1.5 OD)
RNP Antibody - <0.2 (low:<1.0 AI)
SSA Antibody - 0.3 (low:<1.0 AI)
SSB Antibody - <0.2 (low:<1.0 AI)
Centromere - <0.2 (low:<1.0 AI)
Scleroderma IgG AB - <0.2 (low:<1.0 AI)
Jo1 Antibody - <0.2 (low:<1.0 AI)
Ribosomal RNP - <0.2 (low:<1.0 AI)
Chromatin Antibody - <0.2 (low:<1.0 AI)
CRP - <0.3 (0.0-1.0 mg/dL)
Rheumatiod Factor - 8 (low: <20 UI/ml)
WSR - 2 (0-20mm/Hr)
Microsomal Antibody - <3.0 (low: <5.0 IU/mL)
Vitamin B12 - 710 (H) (221-700pg/mL)

Hep B Core Ab, total – Neg
Hep C Antibody IA – Neg
HBsAg – Neg
HepB Surface Ab Qual – Neg
HIV 1 & 2 Ab EIA – Non Reactive
Protein total - 7.3 (6.0-8.4 g/dl)
Albumin - 4.9 (3.5-5.0g/dL)
Calcium - 9.8 (8.5-10.5mg/dL)
Biliruben, Total - 0.7 (0.0-1.5 mg/dL)
Alkaline Phosphatase - 49 (40-150 U/L)
AST - 22 (7-40 U/L)
Glucose - 84 (65-100 mg/dL)
BUN - 13 (8-25 mg/dl)
Creatinine - 0.83 (0.70-1.40 mg/dL)
Sodium - 138 (132-148 mmol/L)
Potassium - 4.1 (3.5-5.0 mmol/L
Chloride - 104 (98-110 mmol/L)
CO2 - 23 (23-32 mmol/L)
Anion Gap - 11 (1-15 mmol/L)
ALT - 11 (1-45 U/L)
eGFR - >60 (no reference value)
MPA Serum IgG - 978 (717-1411 mg/dL)
MPA Serum IgA - 108 (78-391 mg/dL)
MPA Serum IgM - 110 (53-334 mg/dL)
MPA Serum Kappa - 786 (534-1267 mg/dL)
MPA Serum Lambda - 464 (253-653 mg/dL)
MPA Kappa/Lambda Ratio - 1.69 (1-3)
UMPA Interpretation: A definitive M protien is not seen. Albumin is seen.
Triglyceride - 51 (30-149 mg/dL)
12 hour fast: Cholesterol - 179 (100-199 mg/dL)
HDL - 63 (low: >55 mg/dL)
VLDL - 10 (6-40 mg/dL)
LDL - 106 (60-129 mg/dL)
TC:HDL Ratio - 2.84 (1.00-5.00)
LDL:HDL Ratio - 1.68 (0.50-3.55)
Glucose 0hr - 77 (65-100mg/dL)
Glucose 1hr - 184 (low: <200 mg/dL)
Glucose 2hr - 117 (low:140 mg/dL)

Thanks again everyone for your info and input.
I've decided that I'm just going to live my life the way I want and not focus on all the little details. I've spent so many years trying to find out what is wrong with me, and even with the SFN, no one really knows and I'm tired of spending my time on "IT" and not life.
I could be hit by a bus tomorrow so why focus in on this?

Thanks again and I hope you all find the peace and comfort you deserve!

It's good that you've had that extensive a lab work-up--
 

--and that most of the results fall into "normal" ranges.

The presumption is that your autoimmune processes, which you do have evidence for--the elevated ANA, scleroderma, thyroid nodules--are the cause of your neuropathy, and certainly any of the ANA autoimmune vasculitic/connective tissue disorders can cause nerve compromise. (And, low thyroid function is also implicated in neuropathy). I wonder, though, if it might be worth it at some point to get titred up for some of the specific anti-nerve autoantibodies--anti-sulfatide, anti-myelin associated glycoprotein, and the like. If any of these were present it might suggest a somewhat different immune modulating regimen.

In the Useful Website stickies you can see good lists of these autoantibodies in the Quest/Latov paper:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

and also in the Liza Jane spreadsheets:

http://www.lizajane.org/NeuronalAntibodyTests.htm

as well as at the Washington University at St Louis. Neuromuscular website:

http://neuromuscular.wustl.edu/nother/autoantibody.html

Scleroderma has a specific blood marker. Many connective tissue diseases do not, but can cause substantial morbidity and mortality.

At this juncture, they have decided I have autoimmune autonomic neuropathy (and sensory neuropathy) and seronegative Sjogrens, which could just as well be a spondyloarthropathy. I have oncholysis which could be a psoriatic nail and lend itself to psoriatic arthropathy as well. My ligaments now are tearing hear and there. I have some connective tissue disorder with neuropathy, yet to be named.

I am on IVIG for the inflammatory neuropathy and it works some what for the numbness, and autonomic issues.

IVIG is tough to get. They approve me on a 6 month basis.

I can not take the other meds such as TNF blockers. I get very sick on drugs.

My first feeling was to panic, and I probably did. At this point, I feel I am not going to meet my demise immediately, however, I can relate to how you must feel.

Hang in there. Also, if you need a good neuro and don't mind traveling PM me.

Thanks again for the replies. Right now, my biggest issue is that I have no health insurance. I was able to get all these tests because the Cleveland Clinic has a program for uninsured where they pay all or part of your bills, based off your income, as long as it's medically necessary. My primary is great, and gets whatever he can under that "necessary" umbrella, but the $2000.00 per month treatments wouldn't be covered, because that is a prescription and they don't cover those. I can't get a second opinion from a different neuro because of the insurance issue.
I could see if they knew for a FACT that it was autoimmune - that would justify the treatments, but they are just guessing... that makes the very expensive treatment plan a "Maybe". Not when Neurontin and Lycira have the same "maybe" benefits.
I did get some of my results back - but not the biopsies, which is what I really wanted. The QSRT said I the response in the left foot and left forearm are reduced... My left foot, normal value is >.18, mine was 0.06 and my forearm value >.20, mine was .13, whatever that all means.
Will have to call and deal with that nurse again for biopsy results! She basically told me, in as nice a terms as possible that I should be grateful it's not something more serious, like this patient she has with AML who has a family and is dying. I'm quite offended by that since I just lost a cousin to AML in July!
ARGH!
Anyway, thanks again all!

I am wondering...
 

If you have any skin pigment changes?

There is a bronzing of the skin that occurs with hemochromatosis, that is often mistaken for melasma in women.

Hemochromatosis is a hidden disorder, that shows up only when it is in serious stages. Often it is not tested for. But it deposits iron in the tissues, and may cause PN.

There are special blood tests for it. Kaiser-Permente HMO is now screening all patients for it. This is a genetic disease and not that uncommon.
http://www.hemochromatosis.org/
It is worth looking into.

You should be 'grateful'? Hummmm..
 

and then some.
Again, I will urge you to touch base with the folks at IG LIVING magazine.. just web in the name and you will get to their site - They work with the MFRs to be sure that folks get their IVIG! I've heard feedback from many who have been helped.
As for 'hemachromatosis'? I have an immediate family member who 'had' it and then it went away..... I tested positive for it earlier last year ONCE! and never before nor after... I dunno, maybe I ate too much spinach before the testing? It's not an awful issue to have tho, just go 'give blood' monthly and it clears out that excess, until the next time. IF not diagnosed tho? Could cause lots of problems and damages.
OK lastly, I still have to ask IF they did any IMMUNE thyroid tests...looks like they did a detailed basic test, but not the IMMUNE ones. Not that an adjustment in thyroid meds is the only course of treatment, just the usual one. But that could explain a LOT in immune reactions throughout the rest of you! Know so, cause it happened to me. Only the immune issues w/the thryroid took a few other issues to crop up to be happening and get diagnosed. I will say that when I first got 'hypothyroid'? IT took me over 5 years of 'twiggling' the meds to get things right. Then I got the other immune neuropathy which sent things out of whack but not enuf to be declared big-time. Tho it felt like it at that time of life. I'll look up the Thyroid Immune tests or refer you to a site soon....
As for that NURSE? Well, just ask her to send you the FOIA release forms and to send you copies....and ask how much they will cost. IF it's over $40. for the whole shebang? Go to the hospital [if you can, hobble in? - more better? Walker, cane, or wheelchair-you get the drift?] and see what all THE Patient representative can do for you! While the Patient Rep works for the hospital? They do try to make us patients 'happy campers' and accomodate our needs..... I've used them to my advantage in the past amazingly so..... You can be surprised what you can get if you ask in a non-threatening way [AKA: sue] and just in a way to I want to know what all is going on? Docs ALWAYS appreciate curious and NICE patients... Even tho we are IMPATIENT at times? Being nice and curious goes far in docs estimations of US the patients!
Now, a basic question? Why aren't they doing the steroid route for starters? Usually that is stage one for treatments of immune neuropathies UNLESS something says no... That was my case...
Hang in there... lots going on I am sure! Have faith in yourself to persist in getting this all FIXED or at least, patched up? :hug:'s - j

MrsD, as a matter of fact, I have hyperpigmentation on my neck, forearms, chin and low back. The scleroderma specialist I saw in 2005 told me it was because of my morphea. I've had it since about 1978 though so not sure on that one. I'll look into this. THANKS!

dahlek, They ran for TPO antibodies. That was the Microsmal Antibodies that came back at <3.0 (value low: <5.0) so I read that as negative. Interesting to note, my father has a multinodular goiter as well as hypothyroid, and at least 4 of my cousins on dad's side are also hypo. The cousin who just passed with AML also had a large mass on his thyroid that was "ignored" because the leukemia was too aggressive. When I went to the neuro for the consult and he told me I had some kind of Autonomic Peripheral Nervous System Disorder, and order all the tests, I told him I was a little a little shocked and that "I thought you were just going to tell me it was my thyroid" and that's when he ordered the TPO. I was really hoping to get a script for Synthroid and could start felling better!

At Cleveland Clinic they have a thing called "My Chart" where the docs can post test results. It's a secured network that you log into. My neuro won't post to it, but I think I'm going to get in touch with my fantastic primary and ask if he can post those biopsy results since she forgot to send them with everything else and "I'd really hate to waste more paper and postage". My mother taught me to "kill 'em with kindness" so I was 'very grateful' with his nurse, thanking her for helping me understand. I just don't want to fake it again if I don't have to!

I did also ask her about starting with steroids, and she told me they don't do that for my type of SFN... I already knew better but didn't want to point it out!

I won't give up on getting to the bottom of this, I was just very frustrated the other night. I've been battling this since somewhere around 2001-2002. A four year misdiagnosis and all the tests that went along with it... I've even had a Heart Cath - at age 39 - looking to pulmonary hypertension as a cause of my fatigue! And now I'm getting, we know you have SFN (which explains tons of the symptoms) but not what's causing it, and all the lab results don't really tell much of anything! I'm still frustrated. I cleaned my kitchen and bath GOOD Friday, and could hardly get out of bed Saturday morning... I can't live like this.

simple tests...
 

The first tests are simple blood work...

ferritin, transferritin, TIBC, etc. If these are elevated, then the
gene test is done to confirm.

If they hassle you just give them this information....
http://members.kaiserpermanente.org/...?hwid=hw180388

http://xnet.kp.org/permanentejournal...04/update.html
If it is good enough for their members, it is good enough for YOU.
And they even found a doctor who tested positive, who worked there!

Let us know! What you find out!

This site has photos of a woman who was misdiagnosed:
http://www.blogfabulous.com/miracle-...ception-shift/

Whoo! There are the good guys and the not so good?
 

Understand completely all sides of the issues! Docs have heaps of paperwork to do and then some these days...I'm chuckling at a couple of doctors because they are going 'paperless' and NOW have to key in everything during an office visit - at times it's frustrating because they're soo busy typing that they DON'T LISTEN to you.
As for some other docs? WHERE IS MY 2" by 4"??????? I wanna start swinging.

Mrs D's info about Kaiser is valuable as That is a known 'thrifty' HMO! Thanks! Mrs D! Valuable stuffs.

Again the thyroid? I kept asking my own neuro about this issue and he was firm that there was NO connection.... But because of other medical issues, I was sent to an endocrinologist and voila! Yep, the thyroid immune markers were there! Do, please--Keep in mind that a medical 'specialist' these days has heaps to keep up on just in their specialty.... to be a bit more 'inter-disciplinary' would consume their entire days and nites and leave no time for US! It's the lazy docs that just say "Live with it, nothing to do" that I hate!
Just taking a look at the neuropathy index:
http://neuromuscular.wustl.edu/alfindex.htm - is enuf to give one pause for thought? And, that's not all of the neuro field!

Frustration DOES come with this territory! It is part and parcel of it all. Vent and learn, these are the best things you can do to learn how to cope with it all.

What kind of bribe would you take to clean MY kitchen? I'm willing if you are!

Hugs and hope always! Don't give up. EVER :hug:'s - j

MrsD - I need to look into this even more. My skin kinda has that look, I'll look for more photos and stories. I had CT scans of abdomen 2-3 yrs ago for stomach pain - though gallbladder. Nothing wrong. Doc just ordered CT of head, neck and chest because I'm worried about lymphoma, and they noticed a small cyst on my liver. At least they think it's a cyst. My doc wasn't too concerned so I wasn't. Makes me wonder now. The fact that I have a normal cycle and that helps keep it "calm"... I'll have to get some notes together and get back in touch with the good doc. Thanks again for that!

dhalek - I am seeing an endo. He felt since my "basic" levels were 'normal' he didn't need to test for antibodies, even though he's the one that said my US and biopsy were 'consistent with Hashimoto's'. He said he wasn't going to treat it, just watch and wait. I go back in July for another US to see if the nodule grows and a follw-up visit with him.

Gotta go. Grand daughter is throwing fits...
Hubby's obliviously eating Ice Cream....

dahlek: I think I'm going to retire from the big cleaning after the other day! :D
Make the kids do most of it so I can do the least...
I'll save my energy to go dancing! Hubby is in a band, I dance most of the night. Beats me up and have to rest for a day or two, but at least it keeps feet and ankles strong!

Did a bit more research on my morphea. A few years ago, they didn't know much about it, other than it wasn't systemic. But, I found something today called Deep Morphea or subcutaneous morphea that can cause SFN, High ANA Titers, some esophageal involvement, the itching and hyperpigmentation!
With General morphea, the "patch" usually goes away after a few years. I've had mine since around 1973! I can tell just by looking at it that it involves deeper tissue because if I compare it to the other side (inner knee) it's very concave unlike my normal knee which is slightly convexed!
I'm going to look into this much deeper, but I'm starting to think this may be it.
Thanks again for all the info, and for not letting me ignore this!

Oh shucks!
 

I could have used you! At least you've got kids, tho it may require some sorts of persuasion?
I had always thot my Thyroid was an issue, and the Neuro said NOT! It took some funky blood workups to get my Ocon to refer me to an Endo...Who did the AI-Thyroid tests...The PN and the thyroid mite be connected? But I think the two issues went whacko independently of each other....
I'd managed to 'save' some old sonos that were going to be destroyed from when I'd first gotten thyroid problems a dozen years ago and the Endo compared them to his own sonos.... comment was: "Original ones show 'YUCKY' Thyroid, Now, it's REALLY 'YUCKY'!" [Auto-immune scarring] What does one say to that? Other than....'Oh, I sort of figured something was off.'
Just press asking questions! Don't give up? It only took me four years of asking all of my dozen docs the same questions to get answers! July isn't that far away really... But THEN press for answers and w/lymphomas you mite just want to have a look-see by a good Oncologist? Especially if it [cancer] runs in your family history that you know of... or even suspect. Ocons look for/at other markers from blood tests and something mite pop up there-tho I hope truly that all is clear! It's a peace of mind thing, if you can afford it-DO it!
If insurance is an issue? Your local American Cancer Society may have programs for screenings and the like...how extensive depends on where you live, I'm afraid. I hope you get lucky!
Hugs and hope always! Keep faith in that your body is telling YOU things, it's just the learning what's being told to you that's a challenge. - j

Cancer is big on dad's side.
Grandfather had prostate cancer. He had 6 brothers. One died in WW2. Of the remaining 5 only one didn't have cancer. One of them even had thyroid cancer. We also believe thier father had cancer. He committed suicide in 1928 for financial AND health reasons. The cousin who just passed away with AML also had a thyroid mass.

On mom's side, Mom has CLL and survived Breast Cancer and her grandmother had stomach cancer.

My dad also having a multinodular goiter puts me at a higher risk for pappilary carcinoma (thyroid) and my mom having CLL puts me at a higher risk for lymphoma. Plus, (ashamed) I'm a smoker for 29 years. That's why my doc ordered the CT's for me and that's why we are going to keep an eye on the thyroid nodule. I know here that at least 2 of my doc's wont ignore any signs of cancer. The cryoglobulin test (which was normal) can be a cancer marker as well.

I'm going to discuss those risk factors with my endo as well as my symptoms and see what I can get from it. He just talks with a heavy accent at a very low volume...
Have a great day!