small fiber neuropathy- new rx Methodtrexate
 

Hello again! I recently. Have been dx'd with small fiber neuropathy by skin punch biospy on foot and ankle. I really appreciate the responses that I have received and begs me to ask my doctor more questions at our next appointment. One suggestion raised was Dorsal Root Ganglion involvement and after doing a lot of reading on the subject it seems to Be a logical step to take. However, being as I've been struggling for 15 years With his and have finally found a dr. Who at least bothered to test me, how do I go about broaching he subject without alienating him. It appears in the past whenever I question a. Dr. It becomes a very touchy subject and in then end told to live With It. I do not want to alienate this dr.as I feel he may be he last one I see that can provide answers.I also wonder why he only tested 2 sites instead of the required 3 that would have told the SFN is not only in my foot. Also as I have exCeSsivee sweating, frequent UTi's, IBS, difficulty. Urinating, a Qsart test would clarify. Autonomic involement, but yet again I am fearful of saying anything. If. Anyone out there can think of a diplomatic way for. Me to handle this I would be eternally grateful!! Also the. Dr has put me on Methotrexate. Has anyone else tried this and how did it help?thAnk you again for your responses!! Thank God I found this site!!

Talking to a doctor...
 

If you'll google: how to talk to a doctor you'll find a number of articles on how to do that effectively.
This article may also be helpful/of interest.

Doc

Well, I have a couple of comments.

1) if you DO have damage in the dorsal roots, there is not much you can do about it. Ability to repair this damage varies genetically from person to person. Healing is all one can expect, as there are no RX drug treatments for it.
Symptom reduction (palliative care) is all that is available.

2) But if your doctor suspects, autoimmune factors, then methotrexate is one drug he/she may try.
Examples of conditions that are autoimmune are Sjogren's and
lupus.

One cannot really control doctors... or force them into anything IMO. They do what they do and that is that.

I would consider those chronic UTIs however, because many drugs that treat these infections can cause PN. Doctors are not going to support this contention, because they typically ignore and avoid any culpability and will not blame other doctors or testify against them. IBS can result from deranged bacterial flora in the gut, which comes about from multiple or long term antibiotic use. So when patients have multiple medical issues, and get various treatments, the situation may become what is called iatrogenic---doctor caused. Doctors consider this a consequence of treatment, and typically do not explain this to the patients. Also this is termed benefit vs risk. In general the doctor makes this decision and typically does not involve you.
At times they may inform, but many times they do not.

If the doctor is ordering methotrexate, then he must be thinking autoimmune. What tests have you had for this?

I would not 'question' the doctor, but instead implant the ideas/thoughts you have in the way that he would think they are his ideas...if you know what I mean. You can also start by saying, "what are your thoughts on..." This opens the door for him.

Yes, I call this "going in the back door"... It is very helpful when training children and pets too! LOL In essence you let them think it is THEIR idea, but it is you who implanted it.

Neurologists can be the worst when it comes to being arrogant and stubborn however.

Also I'd like to remind: People on methotrexate are typically given folic acid with it, because the Methotrexate depletes it in the body.

talking to doctors, methotrexate
 

Hello again and thank you for your info on both topics! I was prescribed folic acid to go with ( actually instructed to take it at least 24 hrs after the methotrexate. Your advice in dealing with doctors is Very sound, however this "etting the dr. Think it was his idea never works for me. For 15 yrs I've tried this route and still, here I sit without firm dx..It is as if they already made up their mind before I say a word. The latest in particular is the most frustratingg at the moment. Although I am grateful he did the skin punch biopsy,When giving me the results of the skin biopsy, he was adamant that the burning skin on my upper torso IS NOT from SFN, when he onlly biopSied the foot and ankle. From everything I've read so far tellS me he couldn't possisbily come to that conclusion without doing a third site for non-length dependant SFN. (The biopsy on foot came back positive, ankle negative. And why would he only do The 2 sites when info on performing this test says the "gold standard" is 3 sites? However by rx''ing methotexate does that mean he is rethinking tht position? Sjoren's Syndrome (which he may/may not investigate me for) includes non-length dependant SFN if I am right). How do I make him think it would be his idea to do a third biopsy when he was so adamant? Even Sjorgen's is only a small percentage of NLD SFN. My own GP was actually angry (and made sure I knew he was) with me for trying to find answers initially to what is happening to me. Telling me to stop doing my own research- I am not a. Doctor,, that there is nothing medically wrong with me. ThiS is what they said to me on suCh instances that I had DVTs, Pulmonary Embolism, bowel hemorage from parisites, numerous kidney infections, and these were not all from the same doctor. I know I must sound paranoid, and maybe to a degree I am, but I am so tired of passively waiting for evidence to become so obvious that they can't help but see my complaints are valid..thank you for letting me vent, and I pray that you. Can advise me how to at least get the third siite done so they have a more reliable starting point to invetigate,, that is, IF they DO investigate. I don't see him for another few months so I've even considered written correspondance as I truly think he is my last hope for getting answers. Thank you again and I apologize for the length of this post.

As MrsD said, some doctors (especially neurologists) can be stubborn. I would just ask him outright to do one additional site since the foot was positive. If he refuses, then I'd look for a second opinion.

I would also find out WHY he prescribed the methotrexate...what EXACTLY is he treating with it (if for PN, then what is the core problem causing it)? You don't usually Rx methotrexate without some basis for it's use. Something tells me that he doesn't think there is nothing wrong with you; or he wouldn't be treating you. Have they done any tests for autoimmune diseases?

Have you been tested for Sjogren's...better yet, do you even have any symptoms of Sjogren's?

Hello and thank you for your reply! I know it is really confusing, and. I can't blamme new drs that come into the picture. This joourney has been 15 yrs and very few answers.what started with very little pain, then pain deep in muscles moving from legs up to include srms, then pressure pain (blood presure cuff agony to simple hugs being painful and then finally the last 2. Yrs the Skin burning pain that came suddenly-first. In my arm and then across my upper back...eventually widespread.when I went to my last appt. It was my first one with this specialist....his resident had done the history, biopsy on foot and ankle done by him and he gave me the results. There wasn't much much discussion with him. He just said that biopsy results does not explain the pain in my upper body, and no matter what hospital did it. When he asked why I looked confused I told him that I didn''t understand how this pain could start in the upper body and have Made so much change to my skin on my arms etc, but end up being positive in my feet(the last place it hit). He asked if I had dry mouth which is a resounding yes(at ny Worst have actually bought a bottle of water with a visa card I was so desperate). So he told me to stop elavil and start methotrexate and in 3 months he may do a lip biopsy for sjogren's. That was about it. I. Have been on fentanyl patCHes and dilaudid for 2 years to cope. With the burrning. I had beEn taking oxycontin for the muscle pain but when it switched To the skin it didn't help one iota. I have an. Uncomfortable relationship with my family physician because when the pain type switched so drastically and accutely I was not content to just take all this pain medication. I wanted to find an answer to what had changed and what was happening to me. He was not happy about that, told me it was pain syndrome at one point and demanded I stop looking for answers.last year he said "There Is nothing meDically wrong with You!" When I approached him about seeing soomeone for small fiber neuropathy skin biopsy. I appreciate your advice about getting another. Dr. However That is pretty impossible. In canada, and especially in my position with my family physician (we have severe shortage). Perhaps the sspecialist has read famiily dr.'S opinion of it being in my head and pre-judged my case..I don't know. But I do know that having a third site done would 99 per cent prove it''s not in my head(rather in my skin lol). It Was my request to have it done in the first place that found SFN in my feet after all. No doctor that has seen me recomended it . Another med site's neuro suggested it after I gve him a brief description of events.so I guess I just hang on til my 3 moonth. Appointment to see what happens next. I'm just tired of "seeing What happens" when I truly believe doing the third site biopsy wouuld give uus answers. I've been patient for 15 years!!! Thank you againn and if youu have any suggestions,please advise!

Well, you really seem to be between a rock and a hard place. You really need another doctor to look at this objectively...and I agree an addition site of the skin biopsy would prove helpful.

Frankly, starting the methotrexate is backwards to protocol. They should test FIRST for the Sjogren's, not AFTER taking it. Methotrexate can possible alter the result of the lip biopsy...as it's an immune suppressant. So your results may come back negative when you really may have Sjogren's and the methotrexate is masking it.

Sorry to hear your options for medical care are so limited. Have you tried some of the supplements listed on the stickies to see if you get any relief?? If not, that would be the place to start.