Not Neuropathy. Now What?

[Nymph]

I finally got the results back from my skin biopsy and apparently everything looks great! No SFN. This makes me happy, as I was not excited about looking into immunosuppresant drugs to add to my Sjogren's mix.

So here's the deal. I've had hot flashes at night since puberty. I've had allergies and random hives and reactions all my life. I've borderline hypermobile on the Beighton scale. I've had shakey episodes I attributed to hypoglycemia since my early twenties. And I developed more classic POTS symptoms around 30, when my Sjogren's symptoms started.

I do have persistent neck pain and my cardiologist wants me to get a cervical MRI, but I think that's because he has a preconceived idea that most POTS is due to cervical/brain stem issues.

I'm not sure what to pursue next or just to leave it. My symptoms have become more pronounced and regular this year, but I am still quite mild and functional, now that I have learned how to help myself. I do wonder if this is going to get worse, though.

I am so tired of doctors! On the other hand, I would be interested in digging further into the cause if it would be of practical benefit.

What are your experiences? Has it been helpful to pursue further diagnoses? How so?

[gjensen]

That is a hard to call to make. One you will make your own decisions on. You want to cover all of the bases, I am sure. Are you managed well? How is the quality of your life?

Have you been investigated for MCAS? I was skeptical of the whole thing, but it has gotten to a point where I cannot ignore it anymore. I ask because you mentioned the allergic reactions.

A good thing about the punch biopsies is if they show SFN, then you have it. The bad thing about them is that they do not 100% rule it out.

I am not sure what you are calling night time hot flashes. Is it night sweats?

What are your Sjogren's symptoms?

[Nymph]

Hi Gjensen. Thanks.

My Sjogren's symptoms are mild dryness (eyes and nose primarily, sometimes mouth) and many different types of joint pain, some entrapment neuropathy (CTS, ulnar nerve), and fatigue.

I also have brain fog and other symptoms that could be attributable to Sjogren's or POTS and I think are mostly POTS.

No, my hot flashes are usually not sweats, although I get those occasionally. I just get really hot. When I was a kid, I would get up in the middle of the night, take off all my pajamas, and blot my whole body with a wet washcloth to cool off. As an adult it's usually enough to get out of bed and put my feet on the cool floor on my way to the bathroom.

Yes, it seems like MCAD is probably the next logical step for me, although I already take an antihistamine daily so I don't know that it's urgent.

My quality of life is decent. I work part time and study part-to-full time. I have almost no social life. I am studying to become a teacher and my greatest concern has to do with progression limiting my ability to do that. I also currently live with my parents and am not at all sure about how I will eventually live independently (again) and support myself. In the last year, my POTS symptoms went from only affecting me for a day or two several times a year, to affecting me roughly half the time. My concern is that will progress more.

If it's not SFN that's causing it progress, what is it? Wouldn't MCAD be fairly stable as long as my "triggers" were stable? That part just does not make sense to me.

[SarahA33]

Hi there!

Sorry to read that you have all this stuff going on, I think the fact that you are able to keep working and going to school shows what strength you must have! I'm sure you will make a really fantastic teacher, you'll absolutely be able to show you future students what its like to not give up when they with challenges or uncertainty!

Regarding your hot flashes, do you flush with them? I've had kind of similar to what you described. My chest, neck and face is what is what is really affected though. I get so hot its indescribable, then I turn bright red or almost a purplish color at times, followed by blotches. I don't have mast cell issues, this is when my NE levels are really high, I've had blood samples taken at CC during a really bad episode. Do you think you could have any correlation with your hot flashes and norepinephrine inclines?

Wishing you the best!

[Nymph]

Thanks! I have no idea. I don't think so, though, as it's not really related to tachycardia, and I would think that would happen if I was having an NE spike. I do flush at other times but not necessarily for the hot flashes, and it's my whole body that turns hot. I have to sleep with my bedroom about 65 degrees. It's like reverse menopause or something.

[angelloz]

I get the blazing heat throughout my body also...and here is the strange part, there is an odd pattern for me. I can lie down to go to bed and feel fine temperature wise..then about 3-4 minutes after lying in bed here comes the heat...off go the covers, sometimes I put ice on my wrists. I can wake up in the night and within a few minutes of waking up the heat builds again. it is like my body cannot not tolerate and type of change.

I know what you mean about doctors and appointments, sometimes one just needs a break from it, but you still want some concrete answers. Best of luck!

[Nymph]

Thanks! Interesting how we all experience the heat thing slightly differently. The mystery continues...