Rapid progression from achey/numb feet to burning and pain EVERYWHERE!

en bloc · 06-01-2014, 07:35 AM

Although it does sound as if your PN is the result of a toxin (Flagyl), your history with the thyroid and possible Sjogren's muddles up the works a bit.

Do you have the typical dry mouth, dry gritty eyes, joint pain, fatigue, etc that is common with Sjogren's? Where these symptoms present from the start?

Your doctor 'here' is completely uninformed...Sjogren's does, in fact, cause nerve damage and in many cases permanent damage to the dorsal root ganglia. Not sure where or how he missed that lesson, but it is widely documented. Being that you have positive blood markers for antibodies associated with Sjogren's, it is an good indication that is at least part of your problem...compounded still by the toxin and thyroid.

The negative lip biopsy could have been due to early stage where significant damage hasn't occurred yet, or just that the couple tiny minor salivary glands taken for biopsy did not have enough lymphocytes present for a positive Dx on the grading scale. I would get a copy of the report itself and read to see exactly what else was mentioned...like chronic sialadenitis or other indications of an ongoing process.

Tell me more about the 'nerve test'. Was it a skin biopsy for small fiber neuropathy, or a sural nerve biopsy? You should have had a skin biopsy to look for SFN. But either way, the sweat glands would also indication Sjogren's or an autonomic problem.

Being that you went to JH for the lip biopsy, you must be close to that facility, right? If so, I would consider going to the JH Sjogren's Center and seeing one of there specialist about the neuro complications of Sjogren's.

http://www.hopkinssjogrens.org/

It's a bit of a process to get in the first time, but may be worth it in your case, since your doctor doesn't recognize neuro complications of Sjogren's. In the mean time, is he at least treating you for the obvious neuropathy, Sjogren's, or anything?

cat1234 · 06-01-2014, 08:24 AM

Thanks all! It is not my first but it is definitely the worst and the longest yet. Since this has been going on for over two years, I have trouble pinpointing the triggers beyond caffeine and alcohol...neither of which I had prior to this flare.

I did go to the Sjogren's Center at Johns Hopkins. I live in Texas but traveled there to see what they could find. The nerve test was the normal EMG and NCS, which both came back normal, and then they also performed a skin biopsy on three different sites on my right leg. I did not get a copy of the test and while the rheumatologist there has been very responsive, the neurologist has not. I will keep trying to obtain a copy. My Schirmer's test was normal and I have normal salivary pooling, and this is probably the reason the doctors have not pursued the Sjogren's much farther in treating my neuropathy. The joint pain and fatigue are definitely present though.

His summary of the test is "The density of sensory nerve fibers in the epidermis of your skin was normal at all three sites biopsied, arguing against a small fiber sensory neuropathy. However, the innervation of your sweat glands (located below your epidermis) was markedly reduced. Dr. so and so has interpreted this finding as supportive of a neuropathic process affecting autonomic nerve fibers innverating sweat glands." I do not know what this means and my neurologist here brushed it off as unremarkable.The joint

I am being treated for neuropathy with various anti-depressants; none of which really help. I have an appointment with a new rheumatologist tomorrow and hoping he will have something to report. He does not take insurance so I am paying out of pocket. This is quite an expensive process and I am wondering if it is even worth continuing to find an underlying cause. It is so bad these past few weeks I am getting really desperate

hopeful · 06-01-2014, 09:29 AM

Cat it is so difficult to go through these flares. I have come to realize there is no rhythm or reason for when I get them. I have racked my brain at times to try to figure it out and never can. I'm so sorry you are going through this.

It appears you are following all the advice given here so I can't give any more suggestions.

I do have a question though, being an exerciser have you changed or added anything to your regimen? I have come to realize if I over do anything I can end in a flare.
I know you have small children have you had to do anything extra with them? Any heavy lifting? Have any of the children or your husband been sick. Sometimes even if I get a little cold I flare up.

As far as your question of whether or not to keep looking for an answer. I've said many times here that I go back and forth with this one. I know when I am in a flare is usually when I feel compelled to seek a diagnosis. I don't think I will ever give up trying to find a reason and an answer. However, most of the time I accept that this is how it is and the reason may never be know.

Enbloc and I have discussed that neuro at the Sjogrens clinic. Yes he is very rude at times, but he may be very good if you can look past that. I'm considering making a new appt for follow-up. I'm just having a hard time getting my husband to agree. He really has a bad taste for him.

I also don't know why you neuro would say Sjogrens does not cause neuropathy. It is a known factor in Sjogrens.

I hope you feel better soon.
Hopeful

Kitt · 06-01-2014, 10:55 AM

I agree. Sjogren's can cause neuropthy.

cat1234 · 06-13-2014, 06:35 PM

Quote:

Originally Posted by Kitt

I agree. Sjogren's can cause neuropthy.

Mrs. D-I have been taking the methyl forms of B12 and Folate for two weeks now and no noticeable improvement. But I will stick to it!

Thank you for the validation! You all motivated me to go to this new rheumatologist who redid all my blood work and said I for sure have Sjogrens and it IS causing my PN along with my other symptoms. So, it is back to the classic Sjogrens protocol neurontin and plaquenil. Wish me luck as I am at an all time low still

And no on the change in exercise. I am pretty regimented so it is pretty much the same stuff although it is quite strenous. I have had to slow down due to the pain and muscle weakness and nothing has improved...

Oh, a nice big STRONG cocktail used to be the very thing. Need to find something new...wonder if crack cocaine is good for you?!

CoachT · 06-13-2014, 07:39 PM

Good luck with the new rheumy. I hope you can find a cause and some relief because I know just how frustrating and scary this journey is. Please let us know how you appointment goes.

KatLC · 06-14-2014, 07:01 PM

I'd suggest seeing another neurologist if you don't think your current one is doing enough to help you. Mine for months was just telling me it would get better and was giving me painkillers which didn't really help with the pain, it just made me not care as much. The second doctor I went to was much more helpful. I'm not sure what would help your condition but I was prescribed a topical cream with anti-inflammatory and nerve meds which helps when the burning and stabbing pain gets real bad.

Also not sure if this is a realistic option for you but I find when the muscle pain gets real bad going in a hot tub or sauna helps me feel well enough to be active.

JOJO63MARTIN · 06-14-2014, 07:51 PM

Quote:

Originally Posted by cat1234

I have not posted in some time except to respond to some other posters. For a short period, I thought I was getting better. My feet were still numb and achey, but not much beyond that. There was some muscle pain, especially in my neck and lower back. Since I work out regularly, I did not think much of it.

The past two weeks, though, the muscle pain moved to my shoulders and became unbearable in my neck and back. And I began to have muscle weakness in my legs and arms which had not been there except periodically in less duration over course of maybe a day or two. I have been seeing a chiropractor for the past two months since the neck pain was bothering me. Other than that, nothing has changed.

On Friday, the pain in my feet became a constant burning and traveled up my lower leg. I have been lying around in pain ever since then and everything hurts. Yesterday I took 200mg of Tramadol and it did not even help.

Just to recap my issues, I am hypothyroid and have had normal thyroid levels with synthroid treatment. Then 3 years ago I contracted a parasite called giardia and began experiencing neuropathy in my feet during treatment. The neuropathy never went away and now I am not even sure if it began before the giardia and just became more apparent when my body was stressed? Anyway, after seeking help I was diagnosed with Sjogrens based on three different sets of blood tests all coming back SSA positive. Then a lip biopsy at Johns Hopkins came back negative. So, I may or may not have it. My neurologist here does not believe Sjogrens is the cause of any nerve pain anyway. I have had every test imaginable and was told in this order that my cause was 1) Sjogrens 2) B6 toxicity 3) mercury poisoning 4) possible nutritional deficiencies.

I have corrected the B6 and mercury levels, and gained 16 lbs. by eating more nutrient dense calories while also carefully increasing vitamin supplementation per the sticky thread. So why all of a sudden are my symptoms the worst they have ever been?????? What step should I take next? My husband is ready to mortgage the house to send me to Mayo! But for what?

If anyone has any clues on where to go next or what questions I should be asking I would so appreciate it. Mrs. D? Dr. Smith? Does this sound like anything you could classify....fibromyalgia? MS? leaky gut issue? Currently I take synthroid for the thyroid, linzess for constipation and tramadol for the pain. I have tried SSRIs, anti convulsants, steriods, IVig therapy. None of these made a significant change so I am not currently on any of them. Plus I recently had a bone density scan and I am dangerously close to osteoporosis and worried to be on any ,ore medications.

I understand your concerns and will pray for you. I have electricity in my legs and spine for a long time. Do you have any information for me.

thepaingame · 06-16-2014, 03:10 AM

Hi Cat1234- want you to know I just registered with this forum just so that I could respond to your recent posts regarding next steps...
Based on your comments, I suspect one of two possibilities- fibromyalgia, or- believe it or not, a side affect of the tramadol.

I suffer from fibromyalgia, and a host of other fun things, and can tell you that the pain you are describing is dead on. I suggest you seek an experienced rheumatologist to explore this possibility.

The other thought that occurred to me involves a recent experience I had with tramadol that was prescribed for a nerve disease I have. At first I felt the tramadol was helping...then over time, I started to develop excruciating pain in my neck and back. I thought I was having a serious fibro flare, then came to realize that the back and neck pain was a side effect of muscle spasms being caused by the tramadol. BTW, I am on linzess too and don't feel that is the problem.

Hope this offers some insight and potential next steps,

Holly

Kitt · 06-16-2014, 09:08 AM

Welcome thepaingame.

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