Quickly Progressing Numbness - Need Advice
 

I’m asking for your help because my symptoms are progressing quickly and I’m panicked. This group has been such a great resource to me and I’m reaching out for any advice you may have to offer

Previous to July 25th, I had burning but no numbness for a year. In the last 2 weeks, my toes started burning and pains shooting up my legs, now my little toes and big toes on both feet have numb spots. In the last 3 days the tops of my hands tingled and now my little fingers don’t work right and I have numb spots on middle fingers and little fingers. I have full body burn including my back, chest, arms, legs, ankles, wrists, upper lip.

Neurologist believes it could be immune system in overdrive due to my having Rocky Mountain Spotted Fever, or an autoimmune response, or histamine intolerance/mast cell activation syndrome. I have an appointment with an allergist/immunologist this Wednesday and had to stop all my anti-histamines yesterday in preparation for testing.

I had what is believed to be a histamine response mid-May and started on anti-histamines and a low histamine diet and that helped. During one of my “flares” my neurologist tried methylprednisolone and it didn’t help, although prednisone at a higher dose helped in February.

A bit, or maybe a lot lol, of background…
I had sudden onset of symptoms in July ’21 – thighs and back of arms burning, feet tingling, side of right foot felt “funny”.
I’ve had burning that varies – always on ankles and wrists, and when it’s the worst, it’s full body and top lip. Neurologist ran blood tests, EMGs, and MRI’s. Only tests left are genetic testing. All OK except for biopsy for small fiber that showed significant decrease in density of fibers in ankle but not thigh. Rheumatologist ran bloodwork for autoimmune all OK but did show active Rocky Mountain Spotted Fever. Infectious disease doctor treated and is rechecking titers next month.
Had consults with Weill Cornell (not Dr. Latov), Duke, and UNC. Idiopathic small fiber was the consensus.
I’m currently taking hydroxychloroquine 200mg to modulate my immune system and reduce inflammation, LDN 4.5 mg, pregabalin 25 to 50 mg at night, and the supplements Mrs. D recommended; I wish I could thank her.
I want to remain hopeful that we can find the cause of the small fiber and stop the progression but this numbness, and how quickly it is progressing, is frightening me. I would welcome any and all suggestions from you.

Thank you for taking the time to read all of this. Mary

Welcome MaryCarol. :Tip-Hat: Someone will be along.

Thank you, Kitt

Welcome, MaryCarol!

Do you know when you got the Rocky Mountain spotted fever? It has to have been through a tick bite. If you've had it for quite a while, untreated, it seems to me that your symptoms might be connected with it, as your neurologist has indicated.

The usual treatment for RMSF is doxycycline. Is that the treatment you've been getting?

Good luck with the appointment on Wednesday. I hope you can find some helpful answers.:)

Hi Agate,

Thank you for responding to me. I don't know when I was bitten but my symptoms started July 12, 2021 and I didn't get tested for Rocky Mountain until the end of October. Did 2 weeks of Doxycycline. Went to an Infectious Disease Dr. who prescribed another 8 weeks of Doxi along with Rifampin followed by hydroxychloroquine that I continue to take. My Infectious Disease Dr. is checking my titers again in Sept. During Covid lockdown, I spent 4 - 5 hours a day working in a Community Garden and I'm thinking I got bit while there.

Thanks for the good wishes for Wednesday! I'll let you know what happens.

Mary

I went to the allergist/immunologist and am currently undergoing testing for mast cell activation syndrome. I should have results in the next 2 weeks.

The dr. said MCAS doesn't cause PN but is a separate condition. Here I was thinking maybe I had found the cause of my small fiber....