When Neuropathy Diagnosis And Treatment Becomes A Marathon!

Today's post from momarewethereyet.net (see link below) illustrates the fact that neuropathy patients have to have the patience of a saint and the endurance of a marathon runner when it comes to dealing with doctors, neurologists and the symptoms of nerve damage. The story below will undoubtedly ring a few bells with many people, who've come up against the inconsistencies, inaccuracies and unbearable delays of the medical system. There's no doubt, if you have neuropathy you have to be prepared for the long haul; listen to your body and adopt bloody-mindedness as a mantra and have an extremely thick skin! We all know that neuropathy is a disease with multiple causes and forms but the least we can expect from our doctors is professional interest and a professional approach. The problem is that most home doctors have a bedside manner but very little background knowledge and experience of neuropathy. At the same time, neurologists have all the knowledge and experience but very little bedside manner! And getting either of them to admit a mistake...well, don't hold your breath! The patient has to negotiate the minefield in full battle armour!

Who Knew Toe Problems Means Neuropathy From Back Damage
12/30/2018 admin 

Problems With My Toe.. errr. Back… Opps.

I’ve been having problems ‘with my big toe’ for about 1 1/2 years now. Saw my primary doctor, Dr. Llama a few times about it at the Simi Valley Kaiser Permanente office. We both knew I had a bunion on my left big toe but I wasn’t sure if this was different. I was experiencing weakness in my toe (can’t stand on tippy toes or hold body up if I’m on tippy toes and noticed it with some equipment at the gym). She told me it was due to my bunion and ignore it until I’m ready for surgery. Even said to not do bunion surgery unless it was sore all the time or really bad since I won’t have full flexibility after the surgery. I got a massage at a wellness clinic (for my blog) and the masseuse noticed my calf on my left leg was smaller. I talked to Dr. Llama about it again. I was thinking it was because I was walking different due to the bunion. She checked it and said yes. Again, ignore it. It get sore (and red) when I walk a lot but isn’t really bad so I take her advice.


Picture of my ugly big toe. I don’t know much about bunions. Broke my toe a few years ago and figured that is what make it happen. But thought the doctor knows best.




Fast forward a year…

My toe is bothering me more. Seems weaker. I’m worried about it getting worse. What if my balance gets worse. I have problems going up/down stairs or stepping up or down a curb. I make another doctor’s appointment with Dr. Llama. It is scheduled for Monday. I happen to be at my dad’s the day before (for our weekly Sunday night dinner) and a relative is in town. He is currently in medical school. I’m just randomly discussing it with him and gives me a LOOK. Tells me to take off my shoe. Does a few things (holds my toe and tells me to push hard, pull hard, etc). Tells me, “That is not your toe. That is a problem in your lower back. You need to see a neurologist, not a podiatrist.”


Wow!! A million thoughts going through my head. I talk with him about it more. Ask more questions. Just random I have an appointment the next day with my doctor. But am NOT happy that all this time the ‘problem with my toe’ has been dismissed.

Monday rolls around and I go to the appointment. My plan was to discuss it, discuss podiatry again and see what she says. I do. She says the same thing. I mention what my relative says about it being my back. She somehow changes it, like I’m JUST saying this, for the first time ever. Asks me when I first noticed this, etc. I’m like, “YOU told me it was the bunion and to ignore it.” She doesn’t say much else. Gives me the referral. (Inside I’m pissed that she isn’t accepting fault or apologizing).


I also ask for a referral for a pink bumpy patch on the inside of my left calf. Last time I saw her she told me, “It is athlete’s foot, you probably got it gardening.” The medicine she told me to use hasn’t helped much and I’d been using it for about 4+ months. She gives me a referral to dermatology. She looks at the patch of dry skin on the back of my right hand and tells me it looks precancerous. (Me thinking… WHAT?) outloud, “You told me this was an age spot and there was nothing I could to about it and to ignore it.” Can you say strike three?


I go to dermatology. He burns off the precancerous spot on my hand (it is now 100% gone and just a faint pink color). He tells me the rash she said was athlete’s foot is eczema. Gives me the CORRECT medicine for this (and now it looks so much better and is almost gone).


I talk to a doctor with the Physical Medicine dept (guess they don’t do neurology dept right away any more). I have an appointment in a few weeks with Dr. Smith.

I get in to see him and he does some strength tests (similar to what my BIL did) and asks questions. Agrees with my BIL, it is my back. Orders an MRI.

A whole ‘hurry up and wait.’ Over the next three months I have an MRI with nothing showing up according to the doctor’s nurse, nerve test, showing slight narrowing of the nerve tunnels but not enough to cause these problems with my big toe, and another MRI, of my pelvic area. Each MRI is at the Woodland Hills Kaiser and most are scheduled late at night (1-:30pm or later) and the Nerve Test was at the same location. Dr Smith isn’t 100% sure what is causing it so refers me to see a neurosurgeon, Dr. Dave. He did another strength test and said it is showing some improvement in my toe (but that seems to be a fluke).

A few weeks later I see Dr Dave. I have a sit down appointment with him in his office to discuss everything. Then he looks at me in his exam room. Then back to his office.

He shows me this picture (and gave me permission to take a photo with my cell phone:




It is hard to see but the picture on the right shows three black circles. Middle is my spine. Left is fine. Right the white ‘circle’ isn’t compete at the top of the circle. THAT is the narrowing of my spine. Not sure how it happened. Clearly happened about 1 1/2 years ago or that is when the symptoms started showing up. He said there IS neuropathy in my calf, like Dr Smith said, AND in my butt (sorry, but I laughed when he said this.. 1- He was checking out my butt. 2- Everyone else missed this, including me). They aren’t significant but aren’t repairable either. The muscle is dead, smaller, damaged. *Note, the white spot is a cyst but he said to ignore it, it is harmless.

During all of this there has been no back pain (that is a positive). So, he thinks I shouldn’t do surgery (might do more damage than good) since even though the damage was done over 1 1/2 years ago, it hasn’t gotten worse either. I do have problems with my sciatic nerve (bothers me on and off since I was pregnant with my son (now 18-years-old). Maybe when these symptoms presented themselves the present would be different. Not necessarily meaning surgery. But chiropractor, physical therapy, etc… to fix it before there was neuropathy and the damage was permanent. I don’t think we will ever know what would be different now. All I can do now is keep an eye on it and let the Physical Medicine or Neurosurgeon know if something new presents itself or if it gets worse.
I do blame Dr. Llama for misdiagnosing me and saying these symptoms were due to a bunion. I’m very mad.

She even had the audacity to tell Dr. Smith that she thought this problem was due to my neck surgery from over 7 years ago. Umm… top of neck would not cause toe problems… lower back controls that. (see… I’m learning new things). Guess she forgot that or didn’t learn it. Funny she is the doctor.

I’m a single parent. What happens if I can’t walk anymore? Can’t support my kids? If my quality of life gets worse due to this? The unknown of it all scares me. It scares me to to hear (or type) the word neuropathy. Shit!! Will this come back to haunt me in 20-30 years? Again, I have to have faith and trust my (new) doctors in them saying to watch it and do nothing.

Plans: 
 
Write letter to Kaiser to let them know she screwed up, so that it is in her chart. Might even tag them in this!
Let her know about it too. I assume Kaiser will, but I want her to know. I trusted her and her expertise and she screwed up. I liked her as a person and doctor.
Change primary doctor and not see her anymore since I don’t trust her (note- already did this).
Lose weight. Dr. Smith and Dr. Dave said this will not help. Neuropathy can’t be reversed. But it will be good for my overall health, might help with my sciatica and will be less weight on my back, legs and toe(s).
Post this as a way of venting and healing. Maybe it will help me release the anger. I know some friends told me (from my FB posts about this) that I should have gotten a second opinion. But I didn’t doubt her. I trusted her so thought I was fine. I know nothing about bunions so thought she was right.


***All of this is 100% true and my story and no one else’s. I did however change the last name of the doctors. Not sure if I could legally call the doctor ‘Dr Llama’ out on this or mention the other two by name, so I decided to change all three last names.***



My random FB posts during this time: 
 
Nothing like an MRI at 10:30pm in Woodland Hills. Been having problems with my big toe… doctor said ‘it’s my bunion, ignore it until you are ready for surgery’ for over a year now…. come to find out it has nothing to do with the bunion, its something in my back. Ugh!

Okay- those in the nursing/dr field. Need advise. I got a nerve test 6 days ago (last Tuesday) to try to find out the problems with my foot. With one part of the nerve test the dr put a needle in me and did a nerve thing. She started at the foot and went up the leg and back. It hurt but not that bad until she got to my lower back. That one hurt BAD. Was trying to not cry out or hold my breath. She knew (I told her) and she talked me through it. Next one higher wasn’t as bad. Now, 6 days later, it still hurts. I don’t know if something is pinched or if it is just deeply bruised. But today it even seems worse that all the other days. Visually it is not bruised. Thoughts?

For about 3 yrs now I’ve ‘qualified’ for surgery on my bunion on my big toe. Broke the toe a few years before that. been avoiding the surgery because I’ve had too many surgeries in my life. Podiatrist told me ‘ONLY do it when it is unbearable pain.’ So I’ve been putting it off. However, about a year ago a masseuse told me she can see the difference in the muscles in my calf on the left leg and said the bunion might be causing it. I go back to my doctor.. she tells me yes, but avoid the surgery. I also tell my doctor I have a hard time standing on my tippy toes, my left toe is weak and doesn’t hold my weight. She says it is fine, its the bunion… avoid the surgery unless it is really bad.

So, I’m thinking it is worse, and can’t hold my weight up on my left foot (on tippy toes) at all now and make a dr apt go get a referral for podiatry. AND want a referral to dermatology to discuss the patch on the inside of my leg. Last apt she told me it was athlete’s foot.. so I put cream on it for a few months… didn’t go away. Go in and see different dr and he says it is NOT athletes foot and is eczema.

Well… Sunday night my BIL is in town and he’s in med school… I’m chatting with him about my big toe and he looks and does a few things and says that is NOT because of a bunion… that is in your back!!! Probably S1 and S2.. probably a bulging disc. You need to see a neurologist!! So I see my doctor Monday (apt already sch). 1- Tell her what my BIL said… she gives me the referral.. not recalling at all that we’ve discussed all this before.. meaning she dropped the fucking ball. 2- She looks at the back of my hands.. and the patches. Tells me it might be pre-cancerous and I should ask dermatology about them too. I told her, nicely, “YOU told me at the last few apts to ignore them, they are age spots!!” She had no clue what to say!! AGHHH! Can you say I need a better doctor??So I saw Physical Medicine doctor yesterday, he agreed, it is either in my back or in my calf. His words, there is neuropathy (sp?)in my calf!! WTF!!! But isn’t sure the cause.So I have an MRI 10/16. That is the first step. then a neurologist.Dermatologist apt soon too.

Meanwhile- Can’t see chiro.

My sister said best things I can do is: Drink more water, lose weight, chiro and they might want to give me cortisone (but I’m allergic to it).

What a crazy fucking week! Plus I’m so fucking pissed at my primary for ignoring this for so long!!
Saw neurosurgeon yesterday. It is a nerve pinched in S1. Good news- no surgery unless it gets worse. But it’s been about the same for a year. Bad news- after a year being the same it will probably never get better. He said I can try PT but it probably won’t help. There is no pain. But weakness in my big toe. Neuropathy in my calf and in my butt (all on left side) that he said is barely noticeable but the muscle is smaller (and that can’t be undone).
 
https://momarewethereyet.net/who-knew-toe-problems-means-neuropathy-from-back-damage/