Neuropathy Now...

[beccafullcircle]

Hi all, it's been a bit since I've been on the forum. Longing for any possible insight that any of you may hold. Doctor's diagnosed me w/APS in 2013, have had PE's, DVT's & TIA's before I learned to stabilize through the correct INR level (mine is 3.5 to 4 range). Also I have learned to eat clean, vegetarian (eggs & fish ok) Gluten free (with the occasional pizza or hard crust bread from time to time ONLY) and daily consistent hydration along with medicinal tea's. I am on Warfarin 7.5 six days a week then 8 once a week along with Plaquinil & 300 mg of Gabapentin. Recently I started using Organic CBD water based drops & creams for the increasing nerve pain.

Well...my body has managed to rattle along better than I thought was possible only to develop some unexplained nerve pains. Specialists diagnosed me with Fibro and sent me on my way. I do not have a thyroid or diabetes. I also am in menopause yet that isnt rocking my boat...praise God. Seems menopause is the easiest to deal with from my personal perspective. Yet the nerve pain has increased along with numbing, involuntary movements, intense painful jolts. Started tripping often and weakness swooped over me. So I went back to the doc and they did more blood tests...other tests and more tests one being a nerve conduction test (lengthy process not fun either) they found out that my sensory nerves are damaged and no longer responding. "Normally" there would be a reason for this like diabetes or another ugly list of things NO one wants. I tested negative for any of them so they call it "baffling" and so I am tossed in PT now and back at square one as my legs and arms are now at the stage of neuropathy that causes severe cramping, burning, shocks, so much pain oh my. There are times when my arms and legs, feet just stop from working, like I'm unable to move them right. Sigh....

So this is Neuropathy? What's the future looking like for me in this condition? Does anyone have any ideas or has this happened to anyone with APS? One good news is I have found that salt water soaks, hot tubs, elevation along with as much walking and excersizing that I can possibly do along with the strict diet, suppliments and hydration to a "religious" degree does help yet it is not gone. Just keeps it at bay yet not all the time. I had a few really good days after bouncing back from holiday cheats with my diet and then like a sneaker wave last night I stood up on my tippy toes to get tea down after sensing some slight cramps and then my leg shut down with a curse of intense pain. I had to rush to elevate, heat, CBD and lean into God's love and pray it would please leave soon.

Don't get me wrong, I am fully aware that there are lives suffering all over the globe and I know this is not a fatal sad story but it is mine and it is very difficult coming up from air sometimes especially when I am personally doing all that I can possibly do on my part by caring for my vessel and not just tossing in the towel and downing twinkies or caving into the couch. So what can there be done? Is this an APS thing? OR can it be a fluke neuropathy that has no "friend" to create it? I've heard that neuropathy has no cure and can progress into paralysis.

Any takers here? Thanks for listening...there is always such clarity and insight when I pop on so cheers to ya'll from Oregon USA. God bless

Becca

[KerryA]

Hi Becca

Sorry to hear you're in so much pain and discomfort.

I have APS and SLE and similar symptoms with my legs and numbness in my feet and also a bit in my hands. I also had nerve conduction tests that showed the same as you and they don't know the cause, but think it might be down to nerve damage from the lupus of damage to the microcirculation of the nerve causing them not to work properly.

I was put on Amitriptyline (needed quite a high dose to be effective) which did help a lot with the pain and twitching and restlessness of my legs, which were particularly bad at night. I eventually weened myself off it. Had one short episode again which improved with a short course of lower dose Ami (as I had treated it straight away) and I don't have many of those symptoms now (thank God!). My feet are still numb though. My hands were partly painful and numb due to carpal tunnel syndrome, esp left hand. Had a injection in the wrist which has helped a lot with the pain but some numbness still there, which I think has the same cause as in the feet.

Ask for another opinion if your doctors are at a dead end.

Hope you get some relief soon.

Well done for staying as positive as you can and doing as much as you can to keep healthy and as fit as possible. This is sooooo important - I'm speaking now as a rehab physiotherapist. So keep up the good work.

Also keep praying and be strengthened by your faith. This has kept me going too.

God bless

Kerry

[beccafullcircle in reply to KerryA]

Amen amen to this Kerry

Thank you for the encouragement and I concur to all of which you spoke

Thank you kindly again and again

Big hugs

Becca

[HollyHeski Administrator]

Well I love your attitude to hit this head on.

For me, symptoms similar, some down to B12 deficiency, some down to vascular and neurological outlet syndrome and some to APS?!!!!

B12 easy now on supplements, the others doctors just don't know what to do, I've tried various drugs to no avail until I started LDN, this has given me a good quality of life but no cure.

Go with the docters suggestions but if you would like more info on LDN just ask.

[beccafullcircle in reply to HollyHeski]

Thank you kindly

Yes any info on this is helpful I greatly appreciate it thank you kindly

[HollyHeski Administrator in reply to beccafullcircle]

Hi, reading your replies here, shows you are not alone and you've had some good suggestions.

I was diagnosed with cerebral APS too, as well as sjogrens and later with neurogenic-arterial thoracic outlet syndrome. I went round and round with my docters and nothing helped with the pain, pins and needles and dead arms. As a last resort I tried LDN, after Mary suggested it here.

I started taking and after a few weeks of slowly increasing the dose my symptoms improved. Now they are manageable. The double bonus was it also reduced the sjogrens flares.

ncbi.nlm.nih.gov/pmc/articl...

[beccafullcircle in reply to HollyHeski]

Thank you so much for this information. I am relieved for you that you have some release of the pain as I understand it. Thank you again so kindly

Blessings to you

[DannyBoy1]

Hey Sis: I'm right behind you on this part of the journey, so you're not alone. Stumbling, tripping and muscle fatigue. Alll the original symptoms still here. As usual, Doc have no idea what to do. I am interviewing a Neuro in Seattle in a few weeks. I loose a little hope in my expectations each new start but I remain hopeful. I'vew learned to choose better and now at least they KNOW what APS and Hydrocephalus spell. Keep posting updates! God bless you.

[beccafullcircle in reply to DannyBoy1]

There you are Danny Boy

I type with a huge smile

Youre always an encouragement brother

Seattle...eh?

Well you must keep me posted on how that turns out for you

Been wondering if maybe taking a trip to London to where Hughes center is...

I've found a lot of best health feeling when I juice also, been diligent with research on nutrition and daily adhering to this method of overall health

Making the hills that we climb a little more reachable I believe even on the hard days

The CBD takes the edge off. I found a good organic source w/out THC so its just the benefit from the oil/flower of plant not the one that makes one float away...so to speak.

It's been an entirely new season though to see my legs and feet and arms breaking down with the nerve barriers.

Well...God is great none the less

So good to hear from you...means a great deal for your cheers...you have mine also

Blessings

Becca

[Fra22-57]

Hi there. As for the tripping ,jolting and involuntary movements mine was diagnosed as cerebral APS. I do have fibro etc too.my feet do go numb but painfully numb if you can understand that,which is part of fibro.most meds have helped but seem to wear off on me

[beccafullcircle in reply to Fra22-57]

Cerebral APS? I have not heard of this AT ALL! I will research and give info to Doc. Is there a doc that treats you that has this knowledge? Thanks for your input

[Fra22-57]

My local rheumatologist diagnosed me in 2015 and I see Professor David d Cruz at Guys hospital annually. Another member on here Greenmil3 has just been diagnosed with it too

[Greenmil3 in reply to Fra22-57]

Fra I was initially diagnosed approximately 2 years ago with the cerebral APS

[Fra22-57 in reply to Greenmil3]

Oh sorry my mistake

[Holley]

Becca,

You're definitely not alone. I got diagnosed w/ APS during my first attempt at open heart surgery. Got knicked in the carotid while inserting the central line for anesthesia. Hematoma formed, docs noted blood was acting strange. Since then, I've had a sleu of issues: mechanical mitral valve replacement, hemorraghic stroke, ischemic stroke, renal cell carcinoma, Stage 3 chronic kidney disease, etc... been battling with piriformis syndrome since my stroke last year. Piriformis muscle is swollen and pushing on my sciatic nerve. Extremely painful, especially as the day goes on. Been doing physical therapy since March, started to get better then had a relapse of sorts in October and it's been daily ever since. I'd be careful with the CBD products. I was using a sleep aid w/ CBD in January and a topical CBD balm, I was also on Warfarin & antibiotics. I believe the CBD was partially responsible for my stroke. I am trying to find some relief from the intense sciatic pain. It's debilitating. I too was put on Gabapentin (100mg due to kidney issues). It hasn't done anything for the pain. I also do yoga/meditation once a week. I have an appointment with a physiatrist in February to see what tricks he has up his sleeve. I have to go pick up my Lovenox before the pharmacy closes. More later....

health.harvard.edu/blog/can...

Lisa

[Wittycjt in reply to Holley]

Hi Holley... just curious why do you think the topical cbd was partially responsible...did you have any specific reaction?

[Holley in reply to Wittycjt]

I still do the topical CBD balm when at physical therapy. The sleep syrup I was using had CBD in it. So, I was also injesting it.

[Wittycjt in reply to Holley]

👌🏻Hmm thats interesting- i smoke it occasionally it brings my-mind back to prestroke personality, relaxed and jovial! Dont care for ingestion too strong and makes me very loopy- tried it once and never again.

[Milly111]

Holly,

In regards to your severe swollen piriformis leaning on your sciatic nerve, ask your PT or physiatrist to recommend an accredited PT to provide dry needling. It was highly beneficial for me and relieved severe symptoms after 3 sessions. Was given an additional 3 sessions as it is recommended to receive 6 sessions.

[Holley in reply to Milly111]

My PT does dry needling but she doesn't work evenings. Since going back to work, I'm only available for evening appointments with another therapist in the practice who's not trained in it

On my vacations/days off (I'm a special education teacher), I'm going to get more dry needling done.

[Milly111 in reply to Holley]

Good Luck! I hope the dry needling relieves your pain. My Pt recommended waiting a week or two between treatments. He also used an electrical muscle stimulator during one treatment. Although I chose to try that only once. My relief came after the second treatment. Hope this helps!