NeuroTalk Support Groups - Just got back from alledged specialist!!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Just got back from alledged specialist!! (https://www.neurotalk.org/peripheral-neuropathy/225745-alledged-specialist.html)

Quote:

Originally Posted by pinkynose (Post 1169733)

Enbloc: after he looked at the nerve testing and did his testing exam he told me that i did not have any nerve damage even though it was indicated on the nerve test. That became his logic for not looking any further. I did tell him about the MRI & that the referring neurologist wanted him to look at it because he thought it could be the reason for symptoms. But without nerve damage the symptoms lost their importance to him. I think that's a problem with doctors. Without tangible damage they can't commit to the disease, but I believe it takes time for damage to show. Am I suppose to wait for it? I am beyond frustrated. Anyway, I have all the usual SFPN sensations: burning, tingling, pins & needles, buzzing, random sharp pricks. itching on feet, legs, hands and mouth. Evening & nights are the worst. I will be going back to my original doctor who does feel I probably have SFN although he hasn't made it official.

Uglogirl: yes I will tell my primary neurologist exactly what happened.

i think its about time to find another neuro if you can, This neuro seems too lazy, dint want to do anything, but only see you as a cash cow. a top specialist in thier field, doesnt mean that thier the neccesarily the best doctors. Some doctors that arnt in the top are the best. Im pretty sure he is the best in the research field, if he is more invested in being a scientist, hes unlikely going to put effort into being a good doctor, being a doctor is a side job to him, and some doctors are annoyed at patients who complain too much. you can compare this to college professor, some people are only professors, so they can do research/scientist, on the professor side, they are the worst teachers of the subject because all thier energy is into research and not teach mundane subjects to lowly students, but good at researching. or he is more interested in rare diseases in stead of the common "neuropathy".

Quote:

Originally Posted by St George 2013 (Post 1169760)

Ain't that the Dang truth !!

Hi pinkynose......I don't remember but did they do a skin biopsy on you ?

Debi from Georgia

Nope. I can live without the confirmation but what I can't deal with is the slight possibility I could have found a reason for the symptoms so I'd know what to do to maybe keep it from progressing further. I had put way too much hope into this appt and I'm very down this morning:(

I had an appointment like that, not with a "top flight" sort, but it is hurtful when you run into dismissive medical personnel.

Keep your head up, adjust what you can, keep track if symptoms and battle on.

We've got yer back, er feet.

Jon

Quote:

Originally Posted by pinkynose (Post 1169774)

It has to be hard to be objective about the situation. If you use a journal, you might have a start date and a list of symptoms with their degree of severity. Do what the Neuro said to do and let the test of time be the judge.If you try to remove emotion and not predetermine it might be that the problem was as simple as that. I remember truck drivers that had to quit resting the knee on the door panel to the left. If you give it an appropriate trial(3 months?) and it does nothing then you indeed may have been given the bums rush. Good Luck. Ken in Texas.

Pinkynose, A few weeks ago I have been in a very similar situation, and frustrating would be an understatement! :(
I hope you would find a better doctor and get the answers you are looking for.

Quote:

Originally Posted by icelander (Post 1169685)

I put specialists in the category of auto repairmen. Once in a great while, if you are very lucky you'll get a good one. :winky:

Hey, don’t insult the mechanics! ;) I highly appreciate my mechanic, he helped me more than most of the doctors…. :D

Quote:

Originally Posted by stillHoping (Post 1169817)

Pinkynose, A few weeks ago I have been in a very similar situation, and frustrating would be an understatement! :(
I hope you would find a better doctor and get the answers you are looking for.

Hey, don’t insult the mechanics! ;) I highly appreciate my mechanic, he helped me more than most of the doctors…. :D

It's all a crapshoot when dealing with specialists. I get help from my GP and the rest can go hang. He's actually slightly rational.

Pinky Nose the only thing I was told about controlling PN was to keep my sugar down, exercise, rest, control stress and yes don't cross my legs what's told that at physical therapy. I hope with following a plan the fibers and all else involved will heal they push lyrica Gabapentin, etc.

Uglogirl

Quote:

Originally Posted by uglogirl (Post 1169907)

Thats a very general statement, especially fi you dont have diabetes or injuries. neuropathy has multiple causes, most are unknown.

I appreciate your responses more than you'll know. I am feeling much better today about the whole experience, which is what it was. I have regrouped and will carry on. Yesterday I just kept singing a song by Chumbawamba "I get knocked down But I get up again You're never going to keep me down!"
It is now a ringtone on my phone. (Of course it is a song that references a lot of drinking, but I just take what I like and leave the rest;)

Pinkynose: I had a similar experience. My general neuro referred me to a neuromuscular specialist who said he thought my symptoms were due to circulatory issues related to my varicose vein disease.

I then went to a vascular surgeon who said that I do have pretty bad varicose vein disease and she recommended surgery to correct it to the extent possible. However, she did not think that the vascular issues were causing my other symptoms.

Of course, just like you - I have other symptoms throughout the body that are clearly unrelated to the vein issues in my legs. I'm not sure why these specialists like to grab onto one symptom and theorize a cause - while seemingly forgetting about all the other symptoms you have.