Just got back from alledged specialist!!
 

I am not sure what to think. The neurologist didn't look at my other neurologists notes, my MRI's or my blood tests. He listened to me at length and looked only at my nerve testing only. He then did a very thorough examination and got reflex responses out of areas (my ankles) where my other doctor didn't. There was only one test that showed any possible damage on my right foot. It was a vibration test. He told me it was pretty insignificant. He had me walk on my heels, on my toes, bend and touch the ground, and did muscle testing. After all this he said my sensations are caused by crossing my legs and being thin and I needed to stop crossing them. He also said I had carpal tunnel in my hands but nothing major. He recommended a brace I could get for my wrist if I wanted to.

It seems over simplified to me. Also, it would be hard for him to know if my muscles are weaker as he has no frame of reference. Prior to all this my legs were very strong as I worked out and also danced ballet. And bending over to touch my toes is crazy easy for me as I am super flexible. So, I do not know what to think. If I drank this would be a good time to have a few.:confused:

Also, he said my twitches were benign fasciculations not PN.

Any thoughts? Please.

Have you ever explored HNPP? (Hereditary Neuropathy with Liability to Pressure Palsies). Here is a good site telling all about it.

http://www.hnpp.org/

I mention this since you were told not to cross your legs. Just throwing it out there.

It's not anywhere in my family but thank you for mentioning. It's always good to get information.

Just got back from alledged specialist!!
 

Hi Pinky Nose, I hope he is right that is good news. Curious why did you change neurologist. It is puzzling his diagnosis. How long ago were the other test taken. He is right about crossing legs that causes me to have symptoms, but I do have PN.

I had mitral vale prolapse and. Recent cardiologist don't hear anything. It took care of itself. Then a. Nurse said to me you don't get rid of it.

All I know is it does not bother me any more so I go by the way I feel.

When


Uglogirl

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:

I went to him for a 2nd opinion. My neurologist referred as he is a specialist in PN and regarded highly in the medical community. He's one of the top neurologists at a teaching hospital so I foolishly thought he'd be open minded. He spent at least an hour with me and was thorough in his exam but it baffles me why he didn't bother with at least my MRI. I hate to blame it on his age (74) because I'm not far behind but I think he may be set in his ways and has a bit too large of an ego. Hard to know for sure. Time will tell. Meanwhile I'm trying hard to break the habit of crossing my legs as I know it's not good for me regardless.

Well, you have the MRI report...did it show anything important? If it did, then did you at least bring up the findings to the neuro? That may have sparked some interest in him looking at the MRI.

I haven't recently read your previous posts...what (summarized) are your primary symptoms?

Since your neuro referred you to this guy, then I'm assuming he felt you HAVE PN. If you are comfortable with his Dx, then I wouldn't worry about what this new specialist has to say. He seemed to draw conclusions pretty quick without any testing (other than exam).

If he is correct, then yes, it would be good news. But you seem to indicate that your symptoms go beyond some twitches and minor sensory problems from crossing your legs (which would be easy to Dx if they ONLY happen when your legs are crossed).

Time
 

Time will tell. Are you going to talk to your neurologist about his diagnosis.:winky:

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".

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

The bums rush
 

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.


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

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

Thank you!
 

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.

Neurologist
 

My neurologist put me on Cymbalta and I had a very bad reaction to it. After about two hours of taking one tablet I was sweating bullets and spent the rest of the night laying on the bathroom floor thinking, literally, that I was going to die. I called the neurologist the next day, and of course got the nurse's recording and left a message. Got not reply. Called a week later. Still no reply. That doctor never called me back. Some doctors are just really bad.

Once your docs know your drugged up, they dont need to analyze your symptoms anymore, anything else they will attribute to you wanting more drugs. You cant really rely on the same docs who doesnt believe in your symptoms anyways.

I don't think so...
 

No, I don't think my doctor thought I just wanted more drugs. I was very reluctant to try any drugs at first. I only relented when I had to go to work every day and function and my pain level was through the roof. I don't have diabetes or anything and the doctor didn't know what was causing the neuropathy. The supplements weren't helping. I think I had a fever from the Cymbalta because my clothes were soaked. I tried to find a thermometer, but the two I found didn't work. The bottle of pills said to call the doctor immediately if I got a fever. I waited until the next day and called. I don't know if he never got the message, got too busy, or what. I'm not sure if I had an allergic reaction to the Cymbalta or what happened, but I was sick for a week after taking just one tablet.

I wasn't wanting MORE drugs...
 

After doing some more research, I think what I had was Seratonin Syndrome from that Cymbalta, which is potentially very serious. I should have just gone to the emergency room. It is hard to explain, but my brain just didn't feel like it was working right. But a week later, I definitely wasn't "drugged up" from one pill.

Method of diagnosis
 

When you were diagnosed with mitral valve prolapse, was this based solely upon the physician listening to your heart with his stethoscope?

I have heard that it is common, especially for a female, to have a "floppy" valve that will occasionally not close tightly and the physician may hear that on occasion. Also, told, that it is not something of concern. It is sort of like the flapper inside a toilet tank that may not close properly on occasion for any number of reasons.

That would explain why one doctor heard something and another did not.

Have you ever followed up on this matter and received additional testing? It might be worth looking into and not just dismissed as a fluke or common place.

Your post concerns me. Doctors sometime make mistakes but we as patients have to follow up and find out if it was a mistake or something that needs attention.

I've had a similar experience, having MVP then not having it. In my early 30's I started having frequent abnormal heartbeats, and exercise-induced ventricular tachycardia. I was diagnosed with MVP by a UCLA cardiologist who was a nationally recognized expert in MVP. He heard the characteristic sounds, and the abnormal rhythms were attributed to the valve abnormality. I was put on inderal, and this eliminated the problems. About 20 years later I had repeat testing and was told there was no MVP. I stopped the med and sure enough the rhythm problems did not return. I've been told since that MVP doesn't cause the kind of issues I had. Looking back now that I've been diagnosed with sensory and autonomic neuropathy, I see the rhythm abnormalities as being among other unrecognized earlier symptoms of autonomic dysfunction.

My reasoning in believing that MVP was present and went away, is that I also had very hypermobile joints all my life, which have become more normal and less "loose" as I age. I think it's possible the laxity of the heart valve and the joints are related.

Hi hopeless


Hi Hopeless

I had the Ecco and wore a halter monitor and was diagnosed with MVP. I really suffered with it with chest pains arrhythmia also had anxiety and panic attacks. My cardiologist now tells me I don't have it anymore. I have not had any symptom from it for 20 years and Good riddance to it.


Uglogirl

Just got back from alledged specialist!!
 

Dogwalker,
Were you on inderal for 20 years? Yes I definitely had an echo and halter by a renowned cardiologist even saw Dr Healy one of the top at the Cleveland Clinic if my memory serves me right she was involved in politics later. She has since passed away.

My cousin also had mitral valve prolapse and was told it was gone... Different doctor. The point is it can resolve itself. Yours prob resolved itself too. This girl that told me it never goes away who is the dental surgeons assistant did not know.

I also had to take antibiotics fir any dental work now they don't give them.


Uglogirl

Hi neuro problem, I know it was very general if this was the only post you read by me. I am a diabetic 2 and have severe sensori motor Polyneuropathy. Bottom line that is what I do. Watch my carbs, exercise,rest control stress,etc


Uglogirl

I have had a heart murmur and mitral valve prolapse for many years. It is very common and I don't believe a big deal. The only way I know to tell if it's gone is by getting an ultra sound of your heart. The reason I am sure mine has not gone away is because I also have a leak in my tricuspid valve. I am monitored for this every year with an ultra sound so they also look at the rest of my heart and see the mitral valve prolapse. Some years back they changed the protocol for having to pre-medicate before dental work with antibiotics. Now in my understanding, people with mitral valve prolapse do not need to medicate. Hope this helps.

I have mitral valve prolapse too. Diagnosed in my early teens. Dr. usually just listens at my annual physical. Occasionally runs an EKG, but not very often--last one maybe, 6 years ago. Never taken any medication for it, except amoxicillion prior to dental cleanings---which was stopped several years ago, due to new research finding it wasn't necessary.. Interesting that so many of us have it.