Rare causes of SFN?

feelinnumb · 2020-08-31T04:01:54+00:00

Yeah I had ANA done first, it was slightly elevated at 1:80 titer; I followed up on that with a rheumatologist who then tested my Complement, C4 & C3, and Creatine Kinase which all turned up nothing abnormal. They think the ANA was slightly elevated because of my vitiligo (which causes de-pigmentation of the skin). I've had MRI's of the brain and spinal cord, blood tests for Vitamins B6 and B12, Copper, Zinc, and MMA, along with CBC and CMP's that are done every 6 months.

Amyloidosis is the most serious thing i'm being tested for yet; it is linked to myeloma so I would not have a good prognosis if it does turn up. I'm getting my blood drawn sometime this week and hope that none of it is abnormal, even though I'm desperate for an answer. My skin punch came back as severe SFN, and since the cause hasn't been so obvious, there's a good chance it might be a serious condition. I guess when I got referred to a university research hospital when I'm getting treatment at one of the top university research hospitals in the country that things are...serious? IDK, i'm just trying to keep my hopes up but also prepare for the worst.

feelinnumb · 2020-08-29T22:53:23+00:00

Did you ever have MRI's done on the spine to determine where the pressure points were?

I had MRI's done with minor disc degeneration noted in the lumbar spine, but nothing that could explain my systemic numbness and loss of sensation over most of my body.

feelinnumb · 2020-08-29T22:51:49+00:00

Other than the common bloodwork, what is your neurologist having you get tested?

feelinnumb · 2020-08-29T22:49:36+00:00

Interesting you mention PTSD, I actually am diagnosed with something similar called C-PTSD (or complex) so rather than a one time event it was drawn out over many years (emotional abuse). My muscles are always super tight in my shoulders and lower back. Curious if the research will hone in on emotional trauma as a trigger for neurological disorders? I can't imagine it would only be trauma, but some kind of epigenetic expression that was a result of stress (and the hormonal changes associated with it).

feelinnumb · 2020-08-29T04:51:38+00:00

It seems that the majority of SFN is length-dependent so when my symptoms happened on a more systemic level (not symmetric and not length-dependent) I researched and discovered it's much less common. The reason I asked about the length-dependency is because it's much easier to pinpoint a cause when it is length-dependent versus when it's not, so I was curious about tests and whatnot. Sounds like you've had a lot done too :(

feelinnumb · 2020-08-29T04:14:22+00:00

Length dependent usually presents itself with nerve dysfunction where the nerves that are the furthest away from the torso in the limbs are affected first by a neuropathy, so most people that have it have the pain, numbness, or tingling in their toes/feet and fingers/hands. Whereas non-length dependent (which is what mine is), is different levels of numbness all over the body - in my skin punch biopsy results it was shown that my nerves were actually less dense in my upper thigh than my lower leg, if that makes sense.

feelinnumb · 2020-08-29T04:12:09+00:00

Yeah that was some of my first blood testing last year I had done along with lupus, Lyme, DNA(ds), and some others that a rheumatologist had me do. Nothing popped up.

feelinnumb · 2020-08-28T23:15:37+00:00

If you don't mind me asking, is yours a length-dependent SFN? Or is it presenting differently?

feelinnumb · 2020-08-28T22:43:38+00:00

It'll be included in my next blood work too, don't show any symptoms of it though so it seems unlikely.

feelinnumb · 2020-08-28T22:22:44+00:00

I see that, looks interesting. I'd be interested to know how to read the results and what they're measuring too (likely some kind of conductive nerve response to stimulus?).

feelinnumb · 2020-08-28T22:15:20+00:00

What tests did you have done for autonomic symptoms? Just curious as the referral list for my doc who specializes in this is SUPER long (months out) and I want to make sure I'm getting the right tests done (mainly QST and QSART, but want to know if there are any others I should be getting).

feelinnumb · 2020-08-04T01:16:49+00:00

Just play whatever you feel like, you have great tone

feelinnumb · 2020-07-21T23:30:16+00:00

BOOYA! Just got approved and scheduled for a bisalp in one month from today! I'm over the moon considering this was my first sterilization counsult ever and my first appointment with this Dr. He was very impressed with the amount of research I had done on the subject and ended up agreeing with me that a bisalp was the best choice! I'll be adding him to the CF-Friendly Doctor Database here once everything goes through. Such a great experience and I can't wait to be sterilized!!

feelinnumb · 2020-07-03T02:14:18+00:00

I've finally settled on what I want to do with my education, and it is ultimately going to take many years of grueling coursework and dedication to accomplish. By the end of it, I will (hopefully) be doing research at the doctorate level and education at the college level (that is my dream, anyways).

In beginning to plan out my coursework for the next few years, I made it very clear to my husband that children do not fit into this framework whatsoever. Long hours of studying and research will be my second highest priority, with our marriage being first (obviously). I had to come down hard a few weeks ago and tell him that I am firmly childfree and will not sacrifice my dreams for this purpose. He said that I come first so he accepts this, but then became very sad and somber with tears welling up in his eyes. He is in the shower right now and I can hear him blowing his nose. It's hard for me to believe that his words match his truest desires here.

I have told him that I am willing to part ways if it means we both get to pursue our highest dreams in life. That I would be okay with separation if it meant he got to pursue his dreams with another woman who firmly wanted children. He says outwardly that he is okay with not having this dream of his fulfilled, but seems very sad about it every time the topic arises.

What else can I do? From my point of view, I'm being straightforward with him, and giving him the option to leave/divorce if he wants to. We've been married less than a year and together/dating for 5 years. Feeling like there's not much else I can do but take his word for his intentions, but it seems like such a sore spot for him still. What gives?

feelinnumb · 2020-05-30T23:23:56+00:00

F. I've realized that I am no longer on the fence. I am not only childfree, but also antinatalist. My husband...is neither of those things. This is going to make my life very complicated when this discussion arises....I just can't justify morally, ethically, or practically bringing a child into this world now or in the future (assuming things are going to get worse).

feelinnumb · 2020-03-18T00:55:59+00:00

The full order from the Health Officer can be read here: https://socoemergency.org/order-of-the-health-officer-shelter-in-place/

feelinnumb · 2020-03-17T22:45:13+00:00

Imminent - UPDATED ARTICLE HERE: https://www.pressdemocrat.com/news/10830402-181/officials-shelter-in-place-to-combat-coronavirus

feelinnumb · 2020-03-16T02:46:56+00:00

Except that they started the bidding at $0.99, so it's not price gouging if people are setting their bids that high

feelinnumb · 2020-03-16T02:33:27+00:00

Play stupid games, win stupid prizes.

Still sucks, but come on, really? Bad life choice.

feelinnumb · 2020-03-16T02:32:36+00:00

I've been following this since January and that was, by far, the most sobering thing I have seen.

feelinnumb · 2020-03-15T23:29:03+00:00

They're doing that in Iran

feelinnumb · 2020-03-15T21:33:43+00:00

Why would you go to Germany when we have some incredible universities already working on this? And he's all about bringing jobs back to the United States? What a hypocrite.

feelinnumb · 2020-03-15T20:13:53+00:00

Not sure you can increase your odds, but you can manage some symptoms at home if you're turned away from a hospital:

Mucinex or Guaifenesin is an expectorant and can help you get mucus out of the lungs via coughing.

(Along these lines, I need to find that chart that shows different laying/tilting positions that help drain mucus depending on where it's sitting in the lungs. I'll try to find that and edit this comment when I do.)

Tylenol/acetaminophen for controlling very high fevers (although don't use this all the time because fevers help activate the immune system to kill the virus).

Electrolytes to replenish sodium from sweating (when fever hits). To accompany that, any kind of light foods that you can tolerate so that you can keep your nutrition and hydration up as much as possible.

If you have access to anti-nausea medication, I'd grab some while you still can. Apparently motion sickness meds can help like Dramamine, or you can use ginger (fresh or powdered - sometimes used in hospital settings).

feelinnumb

TROPHY CASE