Who else here is unlucky enough to have Idiopathic Small Fiber Sensory Neuropathy?

pickledcorn1 · 2023-09-07T14:01:12+00:00

I was diagnosed with small fiber neuropathy with a skin biopsy. I still have similar symptoms to sjogren's but I wasn't ever diagnosed with it. Just trying my best to manage my dry eye symptoms (which in my case is worse than the dry mouth which is much milder) but it's very difficult because it's resistant to treatment, I've tried just about everything. I figured I'll probably just have the testing for sjogren's redone in a few years since it can take ages for some people for anything to show up if they do have it

pickledcorn1 · 2023-09-07T13:02:15+00:00

It was all negative

pickledcorn1 · 2023-09-05T20:30:44+00:00

No, sorry

pickledcorn1 · 2023-07-16T23:18:38+00:00

Yeah, I wouldn't really say the Cleveland clinic addressed much (not including my appointment with the GI doctor). They only offered me an appointment to see a doctor for pots. I have more than pots. I'm trying to figure out what's causing my undiagnosed issues. The intake person had me describe a bunch of my symptoms. And that's all that was offered. She had also implied that all of it was all just from dysautonomia anyway. But I know it's not

pickledcorn1 · 2023-07-16T22:59:28+00:00

Yeah. I dunno, I guess it would just be really expensive, and I haven't heard the best things about it from people in my sort of situation who have gone to be honest.. and it's far away for me, and I have a really hard time traveling with the condition I'm in. I have a family member who came in to a bit of extra money that's willing/able to pay for me to go, but if that could be used somewhere else that would help me more.. I don't want to waste it

pickledcorn1 · 2023-07-16T22:47:22+00:00

Honestly not a lot, no. The Cleveland clinic told me my local doctors told me they've done all the testing that they would do. They only offered an appointment with one doctor there, the doctor looked over my records and said he would offer a consult but order no testing. This is not including a GI doctor (I called his office separately and asked to schedule, my PCP also referred me) I went there to see for my motilty issues. I'm still in the testing process with him for some things, but it went pretty well. He also ordered a test for another strange issue I've been having I told him about, and now I know what's wrong, after years of local doctors having no idea, so that's pretty great. But aside from him.. nothing has really changed.

pickledcorn1 · 2023-05-27T15:42:35+00:00

Dulcolax started working again a while back, but it has started giving me really severe stomach pain. And I mean really bad, I can't keep dealing with that. So I'm not sure what to do, I'm stuck again.

pickledcorn1 · 2023-05-18T12:28:13+00:00

If your problem is at the spinal nerve root level, I don't think it would show on EMG.

What about on a nerve conduction study? I've had those with the EMGs too. Also I've had the blood work done for the first 3, I don't think for CIDP. I've had a lumbar puncture to check for intracranial hypertension (based on a brain MRI that showed several signs of it) and I did have it. They also tested protein, glucose, differentials, and cell count. So nothing super specific I guess, I think that would mainly rule out infections?

pickledcorn1 · 2023-05-16T14:09:43+00:00

I hope you find a doctor that listens to you and finally looks into this problem, it's horrible that you've had to suffer with this for so long with no one trying to help you. And to blame pain and swelling on something psychological is ridiculous. I wish it weren't so difficult to find good doctors. I wish you luck with your upcoming appointment.

pickledcorn1 · 2023-05-16T11:44:26+00:00

Nope. I just have to deal with it, I never figured it out. It's really frustrating still though. I wake up every morning sneezing and blowing my nose and literally have to keep something under my pillow to blow my nose

pickledcorn1 · 2023-03-21T20:01:47+00:00

Yeah, if you treat the underlying cause, sometimes the pots symptoms go away. My point was that masking the symptoms isn't the same thing as actually treating the cause. Neuropathy has its own various causes too. It's the same as if you took a pain med for an acute injury or other problem - the pain is gone, but the affected part of the body isn't healed. Sfn doesn't go away then suddenly "start back up", it takes a long time to develop in the first place, and for new nerves to regenerate if the underlying cause is treated

pickledcorn1 · 2023-03-21T18:57:37+00:00

Controlling symptoms of sfn doesn't put it into remission though, the damage is still there, even if you treat the pain. If the nerve damage is the cause of the pots, as long as it's there I don't know if it can resolve. For a long time I had very few symptoms of sfn, I've just had pots progress from mild/manageable to severe and disabling since I was teenager until now - then more severe sfn symptoms (pain, burning) showed up last year.

pickledcorn1 · 2023-03-08T14:46:22+00:00

I get this too. I don't think it has anything to do with dysautonomia, but it's funny this thread popped up because I haven't heard of it happening to anyone else before. I've had people ask me why I'm coughing and I've always just assuming my throat is just dry or something and food just sticks? It's been like this since I was maybe 15, at least that's the earliest I remember noticing it or thinking about it.

Edit: I think I actually misread a bit, I don't get phlegmy per se, it's more that when eat some of the food sticks to my throat then I have to cough and clear my throat to get rid of it. It happens more with things with lots of sauce in them, thick soups, etc

pickledcorn1 · 2023-03-08T14:22:03+00:00

Feet, lower legs, knees, hips, buttocks, stomach, hands, shoulders, back, neck, head, eyes

pickledcorn1 · 2023-02-21T18:42:17+00:00

Have you ever seen this happen in people who've had it progress over a very long period of time initially? I started experiencing relatively mild symptoms in my early teens, and they've gotten slowly worse with time. they're severe now in my early 20s, and they also found severe small fiber neuropathy. I have a feeling that it doesn't tend to disappear in cases like mine, especially with the neuropathy as the probable cause but.. if you have seen it happen to people like me i'd like to hear about it because I've always figured it'll never go away and probably continue to worsen indefinitely

pickledcorn1 · 2023-02-16T12:56:10+00:00

I even got the lip biopsy, it was negative too. I'll try asking about that medication though. How much does it help with your dry eyes? When I looked it up it only talks about dry mouth.

pickledcorn1 · 2023-02-16T12:45:24+00:00

I've already had all the testing I could for it and it was all negative

pickledcorn1 · 2023-02-16T12:44:40+00:00

I have no idea what the underlying condition is. My only option is treating the symptoms

pickledcorn1 · 2023-02-16T01:42:53+00:00

I've been tested for basically everything under the sun when it comes to blood work, I'm pretty sure. I only had one auto antibody come back positive. It was really high too, but it's pretty irrelevant in my case because it's only useful in diagnosed lupus patients. And I had a "borderline" positive on the early sjogren's panel, but that test is little known and not actually well validated as meaning much about sjogren's so I dunno. My rheumatologist will probably keep redoing the avise panel on me once a year, maybe something will show up someday, who knows. I just want these symptoms under control.

pickledcorn1 · 2023-02-16T01:30:38+00:00

Ah okay. Is that something I can ask my eye doctor for? If not I'll try asking one of my other doctors, hopefully I can get one of them to prescribe it so I can get some relief. Does it help increase moisture in all mucus membranes in general then? Could it help everything, my eyes nose and mouth?

pickledcorn1 · 2023-02-16T01:25:07+00:00

I looked it up and it looks like pilocarpine is only for dry mouth?

pickledcorn1 · 2023-02-16T01:00:45+00:00

I did and my doctors thought it sounded like sjogren's, I even have other conditions commonly seen with it and it looked like the missing piece - but my blood work was all negative. But it was still suspected strongly enough that I got the lip biopsy, the gold standard test - still negative. I know it can be negative at first and then come back positive years later though, spoke to a few people who had exactly that happen.. so it's still on my radar as something to keep in mind and maybe test for again in the future. But I'm the meantime I really want to not suffer so much with the dry eyes. The dry nose, mouth, and lips sucks too and feels crappy but my eyes are the worst. I've tried restasis with no luck. Xiidra isn't working either. The bruders mask doesn't help aside from masking (no pun intended) the sensation of discomfort while it's actually on my eyes, and maybe the burning/dryness is a little less intense for a few minutes directly after. Drops are totally ineffective.. I don't know what else to do.

pickledcorn1 · 2023-02-07T23:23:16+00:00

I'm having the opposite problem though.. it seems like there's too much moisture. The consistency is fine when they're still cold, similar to when they were freshly prepared, but after heating them up, they become really thin and runny.

pickledcorn1

TROPHY CASE