Neuro visit for neuropathy a big flop

[trc1962]

I saw the long awaited neuro appointment today in which my rheumy alluded a skin biopsy would be done. I ended up seeing a very young ARNP who had not even read my records and had me give her an update. She did the pin prick tests, she had me walk on my toes, touch my finger to my nose and pronounced me neurologically sound and the neuro agreed. They saw no reason for a punch biopsy and suggested I watch gluten intake. I asked about the spasticity in my legs, the burning, the weakness and the burning ache in my face and he said sjogren's is a syndrome of dryness, not nerve involvement and the rheumy should test for other things...back to the drawing board I guess. I let my rheumy know I would like a punch while the stuff is active and hopefully he will insist. Just because you can walk doesn't mean you walk normal or that you don't feel like you are standing on wooden legs at times. It is hard to be taken seriously when stuff hides, but as an active, busy person when I am telling you my legs aren't right, they aren't right! Done venting, going to take some baclofen and do some house work.

[Kathy57]

I'm sorry your neuro appointment was a bust.  I get so angry when I am dismissed or not taken seriously.  Unfortunately it has happened to me and more than once.

I wonder if they would have taken you more seriously if you had an advocate with you?  Just a thought.  Use every card you have to get proper treatment. 

It shouldn't have to be this hard.  Too bad you have to pay the bill for the consult.  If you don't do good work, then you shouldn't be paid.  Bet you'd get some attention and some respect then.

Kathy

[Jasper]

I am so sorry you ended up with such an ignorant neurologist who obviously has no clue about Sjogren's Disease.

About 20% of people with Sjogren's have neurological involvement.  If he does not know that, then he obviously knows nothing about Sjogren's or the many types of neuropathies someone with Sjogren's can have.

Maybe you should print out Dr. Julius Birnbaum's articles concerning Sjogren's neuropathies and take them on any future neuro visits.

I would suggest never going back to this ignorant neurologist.

Instead, I would suggest getting a referral to a neurologist at a university affiliated medical center. They are more likely to be current on neurological aspects of Sjogren's.

It would be even better to see Dr. Julius Birnbaum at Johns Hopkins Sjogren Center.  He is both a neurologist and a rheumatologist and specializes in the neuro problems of Sjogren's.

I think there is also a Sjogren's center in Pennsylvania headed by Dr. Vivino.

I hope you have the option (with your insurance) to see a better educated and more competent neurologist at a university medical center.

[Carolina]

i don't know anything about your doctors, trc, so this isn't a reflection on them.

However, all doctors are NOT equal, and trying to get help from a great many is like 'trying to get gold from a silver mine'.

What I recommend (and this isn't perfect either) is making an appointment at a major medical center connected with a teaching hospital and medical school.

There you should find the best informed and most interested doctors.  Again, I can't say perfect, but you are more likely to find the help you need from doctors affiliated with a large medical center.

Keep us posted on what develops.

Hugs,  Elaine

Again, doctors use the tests they HAVE not the tests they need.  And you need to see THE doctor, not a NP or a PA......

hugs, Elaine

[trc1962]

This guy is the "neuropathy specialist" in Spokane if you can believe that. However, I am 4 hours from Seattle and it is a quick flight, plus I have a brother who lives there, so I guess getting an appointment there might be the next thing to do. However, my rheumy may say he wants the biopsy and insist on that and at least I would have that at least. I feel for all of us that suffer from the strange stuff of neuropathy and the way it really effects every day living. Hoping for a good evening for all!

[Kendo]

My last neuro visit was a similar kind of flop! I was being referred to rule out myasthenia gravis but during the basic exam, the doc used a tuning fork on my feet as I had complained of stocking-glove problems for 8 years.

He was surprised when I couldn't feel the vibration in my worst foot. He moved it to the better foot and I could feel it and then back to the worse one. He was supposed to be a neuromuscular expert who could do a muscle biopsy for me. 

I also have Sjogren's-like symptoms which are partially reversed by the meds I take for the supposed muscle problem. In the end, he said there was nothing wrong with me except for some lingering complications from celiac disease! Even though I have been very strictly gluten-free for 8 years!

So off to the family doctor for a referral to another neurologist, my third one! It will be 1-2 years wait (in Canada) and a 6 hr bus or train trip but worth it to answer questions about why I can't feel my hands and feet, have exercise intolerance, leg cramps, low calcium, etc.

Everything fits with Sjogren's and myasthenia gravis together but several docs says it is neither because I only have a 1:320 ANA positive for homogeneous or speckled pattern, depending on the day!

Keep searching for a doctor who listens to us and asks the right questions is so important.
Good luck
Kendo

[irish]

The thing that is so disgusting when we see a doctor who doesn't see anything wrong with us and tells us to go on our way, is that even if we have a test that is a little bit positive they ignore it. If they don't think there is anything wrong the least they could do is to refer us on for further assessment.

However, egos get in the way. I am so ashamed of all the doctors in the world who don't know when they don't know. I guess they are stuck in their ignorance. I hope that all of you can find a doc who will listen and search out things. I have been in your shoes and it is so frustrating. Eventually, if you keep on being aggressive, you should run into a doc who will help you. Make sure to ask for referrals and if necessary find another doctor yourself.

I ended up calling a hotline in 1996 to get help when my doctor failed me badly and insulted me on top of it.. The on call doctor I ended up with(100 miles away) was in a great ENT group and I have been seen there ever since. They also ended up leading me to the immunologist who is so great and who found my other issues. The immunologist sent me to my great lung specialist. I have to admit I got sidetracked for many years at the university, but I still got where I needed to go.

This is the way it goes sometimes. When we are at the end of our rope something happens that sends us in the right direction to get help. The problem is our health conditions are so complicated and the symptoms come and go so much that it keeps us and the doctors confused. So much information for everyone to try and keep track of. So hang in there and keep on plugging cause eventually you will get your answers. Good luck all. irish

[trc1962]

My rheumy said he sent me to the neuro for the skin biopsy and an EMG and he was expecting that to be done today. He is contacting the ARNP in the morning to please reschedule me and get it done so it can be sent and evaluated. The pathology lab they now ship out to is in Seattle and he feels it is a good part of "history" to have for my file. Thankfully he is going to go to bat for me and maybe something to move forward on. I am grateful for that at least.

[irish]

This is good news. Someone is taking a stand to help you. Take care and good luck. Irish