I have the tingling sometimes now but mostly mine is the severe pain.Before my pain issue I was complaing how I felt my legs couldn't walk. Its hard to explain but like they were fatigues or so weak at times. I went to a physiatrist who did not help me and ended up going to the neuros. The physiatrist did do my first nc though. I'm not sure what else they do but I think more with movement and nerves. So that may help with your issue and the fatigue. If you have the specialist your talking with you may want to schedule an apt. I have found wait lists can be long. You can always cancel. Have you had all the blood work? I understand feeling like the mystery as am in the same and also understand rushed doc feeling. Sorry I can't offer more as the true experts here no more. Good luck

Daniella do your legs feel as heavy as tree trunks when you run? That was one of my first symptoms besides numbness and it continues to this day.

The arms that are fatigued. I have that, especially if I do something repetitive with those muscles. It does not seem to be the arm itself, but seems to be coming from the area across the back, where nerves, tendons, muscles and ligaments attach (area around the scapula). Sometimes it bothers me to the point where I cannot carry my purse.

I know you need to see a neurologist, but I will tell you what helps with this for me. Trigger point injections in the areas I described above. A tiny bit of cortisol, used with lidocaine to numb the area, is injected in those areas. The cortisol helps with inflammation in the area.

In our area, pain management docs do a lot of these, but I know this can also be done by doctors in a number of other specialties.

By the way, regarding your comment on Fibromyalgia. My old Internist told me he felt that this diagnosis was what Rheumatologists come up with, when they cannot figure out what is really wrong... He also said he felt that this would eventually be proved to be a connective tissue disease... Boy, my old Rheumy got defensive when I repeated that to him...

Guess I wasn't very tactful, huh?


Cathie

I sat there for several hours looking at all those nerve diseases, sheesh....Now I wonder if I should even bother forking out another 25 bucks for him to tell me to go somewhere else....but i will need a referral ..when I went to see another neuro re: severe am shakes....at johns hopkins I needed a letter from my doctor....they put me in with some one in movemet disorders and he said He couln't find anything wrong neurologically. Even my psch doc doesn't think its just anxiety. So I am also going to an endo new now. my plate is full of unexplained symptoms... sometimes I just feel like waiting till something really freaky happens............but if it is a muscle disease that can progress and affect my breathing I want to do something! I will keep in touch. If I can find someone in my specialist book I could call for a referral I really don't want to travel to hopkins again. I could not do the tandem walk at all and he blamed it on medication. Kinda scary....I was hopeful that I would finally get some real help there and NADA again...well sorry I am rambling and whining...have a good evening...

Good luck to you. I don't think this is in your mind and that ****** me off when docs make one feel like that or lessen the severity. I don't think you should wait because you don't want things to get worse. If you don't want to go back to the original can you call for a referal? Mine did it over the phone.
Heyjoe before my sever pain the year before I always had very sore calfs and like sometimes I could not walk through a store. I thought it was just from too much working out. Then now I have the severe ankle/foot pain where I can barly get out of bed. I don't know if that was the start and I let it go and then like this now. No one can tell me.

Of course it's not in your mind!!!

I once watched an episode of Strong Medicine on Lifetime. It's an ER kind of series. They brought a woman in screaming. One of the doctors who came to her asked her what was wrong. She replied "I've been diagnosed with Fibrmyalgia". I will never forget what happened next.

The doctor went over to another doctor and whispered "You know there's no such thing as fibromyalgia, it's all in her head", and the other doctor looked at her and said "does it really matter, the woman is in pain". And they prescribed morphine.

Well, by the end of the episode, the doctor (who didn't believe in the diagnosis of Fibro). well....she did such an about face on that subject.


I think it's horrible when a doctor says "it's all in your mind". Like when I went through all those tests to see why I was having bladder spasms that lasted for years. They didn't have to tell me they thought it was all in my mind. I could tell by their faces. If all the x-rays,sonograms and cystoscopes come up negative, and I still had those damm spasms and I always thought I had a bladder infection (I didn't) and I even asked the doctor, could I have interstitial cystitis and he actually laughed in my face....well, what on earth is a person to do? I mean, I went through hell.

It's not in our heads. Our bodies are reacting to something. They treat us like we are brainless idiots when we say "we are in pain" in a particular part of our body. We actually have to be our own advocates for pain treatments and our own advocates on B-12. I have had many conversations with physicians who tell me I'm crazy to think B-12 will help me.

They don't even want to learn.

Thankfully, our Dr. Fred is always receptive. Actually we don't have to tell him anything because he already is up to date on the latest ANYTHING that is going on in the medical world. But he's an internist. It's the neuro's who really have to do their homework (especially on B-12), don't you think??

We baby boomers (and all others with PN), well, we certainly have our work cut out for us.

Melody

Well I went to see my neuro , not so wicked, maybe just uptight?, and asked about my arm weakness again. He ordered bloodwork for B-12, another ANA I had one in Jan from rheumy, another western Blot (he ordered several months ago) RA factor Ive had them before....and another Brain mri and c-spine mri! Had both within 6 months. I asked about further Periperal testing and he wants me to go back to Johns Hopkins as they do not do that in their practice.....so he did not blow me off...I can't believe he is redoing all that stuff. Maybe I was too hasty in calling him Dr. Wicked....he just doesnt' have a good personality. Does seem like hes trying.....so now I have to find a doc to do these other things......I feel much better at least its a start..I hope I can find a place closer to do nerve biopsy or whatever they want to do cause I cant' drive in Baltimore. and I cant have DH take off for every appt. I have. The doc in Baltimore who couldn't figure out my other weird "somatic" HA problem did say I could pursue my neuropathy questions there....maybe I should..I would not get him they have neuros for all the different sub specialties....I could have gone to Hawaii with all I have shelled out on these docs!!! Well glad to have a new beginning of sorts....I already did the bloodwork and got lucky they have opening for mris tomorrow. If only i could get my bathrooms cleaned!

Sounds like you have a great start with your neuro. Now stay on track and have it all done. And...I think Johns Hopkin is a good place to go. And..you've got multiple doctors trying to send you there.

Billye

--it's Bob who does, I believe--but that's OK--I do think highly of the Hopkins neurology department, as much of the inital research into skin biopsy as a diagnostic test for small-fiber neuropathy occurred there. (I also correspond with one of the researchers there.)

I go to Cornell Weill, which is also an excellent place that specializes in neuropathy. With many peripheral neurologic syndromes, it's vitally important to get care, if you can, from a center/practice that specilaizes in neuropathy, which is not the specialization, or even an area of great familiarlity, for most neurologists. (The Mayo Clinic, where Silverlady went, is also such a place.)

Sorry about that Glenn,
Blame it on the Sjogren's fog. I'll learn to let you post first, I think. I've corrected my post.
Thanks for correcting me.

Billye