On orthopedic drs and shoulders, I've now seen three. All three have pretty much stated that I didn't have a significant shoulder situation. Two of the three diagnosed me with a mild case of scapular winging which is interesting since this could be linked to damage to the long thoracic nerve and the de-activation of the serratus anterior muscle. I just visited the shoulder specialist at Beth Israel and he flat out said he doesn't think I need shoulder surgery and that the symptoms are too nervy.

I've been to the neurosurgeon several times. They can't find anything wrong. Hinted at TOS, but didn't think I have it.

So I think I need to see some other people. I've yet to see a neurologist and my this seems like a no-brainer.

I'm now up to 1800mg per day on neurontin. It takes the edge off, but it doesn't completely eliminate my pain nor my fear. It does allow me to continue to do certain activities at the gym, which is good for my emotional well being, but not sure if this is the right thing to do depending on what's really going on. Have yet to get back to work on this. Could be iffy. After each dose, the first couple hours are very fuzzy.

Ugh.

Thanks.

KY

I think I saw 5 orthos, one physiatrist, and I was given every diagnosis out there, all of which were wrong. Then the last ortho sent me to the neurosurgeon and he came up with the final diagnosis which seems to fit. Maybe seeing a neurologist is your best shot, but go in there armed with the information and see what they say. I would ask them directly if your symptoms match the condition and whether there are any tests to determine if thats the proper diagnosis. I would also take all the records from the previous doctors, especially the test results. I hope you'll post what you find out.

sfn is small fiber neuropathy.

what you have to go through is a systematic process of eliminating possibilities until you come to a conclusion. if you suspect neuropathy you should head to a neuropathy centre. This would not be a waste of time. There is one at Cornell University and a neurologist there, Dr. Norman Latov, who has written a book about neuropathy.

Or you could go to a Neurologist now where you live. Maybe there's a good one there.

8 months and many doctors after my feet started burning saw I two Neurologists who both recommended ankle surgery for Tarsal Tunnel Syndrome. I didn't agree with their diagnosis, and was vindicated a month later when I started getting symptoms in my hands. Neither of them recommended testing for B-12. i arranged this myself and discovered I had a very low count. Neither of them suggested that i try to find out why i had low b-12.

I only discovered that i should do this when i saw a 3rd neurologist a few weeks later. the 4th neurologist i saw suggested i go overseas for treatment as there was nobody in hong kong who knew much about peripheral neuropathy. the 5th neurologist i saw said he felt i didn't have PN, but he didn't know what i did have. he only agreed to do some immune testing because i insisted upon it. the 6th neurologist i saw, who works in the same place as the 5th said i did have PN, and ordered more tests, as well as another emg, which seems fairly pointless, as i do not have any loss of sensation or motor function. mine seems to be purely small fibre.

Everything i have learned about this problem has been from doing research on the internet. None of the Neurologists I have seen have been of any use whatsoever.

I have spent a lot of money here on tests that have shown nothing. I am now saving money so that i can head to the USA to a neuropathy centre, wher i hope to at least get a definite diagnosis, and hopefully some good advice on treatment.

Meanwhile the internet, and particularly this forum, is my best source of information. good luck.

EE,

What helped the neurosurgeon make the final diagnosis? What tools? Was it just the physical exam?

I've heard that EMG's come up normal for many of these neuropathies. I'm wondering if any of these are more effective:

MR Angiogram
MR Neurography
MRI of brachial plexus
Scalene block
Thermography

These are some of the other diagnostic tools I keep running into in my research. I want to DEMAND the most effective test.

Anyone?

Thanks.

KY

The NS saw me after an MRI revealed a bulging cervical disc. He ordered an EMG and a mylogram(I referred to it earlier as a discogram, I think) and he did a physical too, but the ortho who sent me there had done a more thorough exam and found some irregularities with reflexes and some other neurological signs. He knew my history, I gather from the ortho, and by excluding other causes, he made the diagnosis. I hope this info is of some use to you.

Seems like you had a clear diagnostic test that showed the problem. That's the issue with me...EMG and cervical spine MRI have already shown clean.

I have an appt scheduled with a neurologist and my surgical ortho tmrw. I want to make sure I ask them to do the right physical exam and order the right tests.

If anyone has any insight here that would be great.

Didn't most of you have a test where there was an "Ah Ha" moment? If yes, I'd like to know what helped reveal your condition.

Thanks.

KY

Well, went to a neurologist today. The net-net after his exam:

1) "I don't have a punch line (i.e. diagnosis) for you."
2) Tests

So I'm having a brachial plexus MRI tmrw, another EMG next week, and blood tests to rule out infection. He did mention RSD as a remote possibility, but much didn't add up. The fact that there's nothing at all going on in my hands had him very much unclear...thus the need for more tests.

Feel happy that I wasn't rushed out the door.

I also visited the ortho who was to conduct arthoscopic surgery on my shoulder this coming Friday. We agreed to postpone for obvious reasons and he agreed with the tests. The ortho also thought my ulnar nerve was inflammed...and this all could be a case of inflammation. So he recommended continuning with the neurontin and also taking anti-inflamatories (which I wasn't sure was a good idea or not previously).

So it's wait and see until these test results come back. Should get MRI results by end of week.

KY

It sounds as though your visits were very productive and that you'll hopefully get some answers. Please keep us posted. I'll be interested to hear the outcome and best of luck to you.

Well, I got the brachial plexus MRI back. Results:

1) There is no evidence of mass or area of abnormal enhancement in the region of the right brachial plexus. Soft tissues are normal in signal. There is no evidence of an apical lung mass.

2) Moderate disc degeneration at C5-C6 and C6-C7 and there is posterior osteophytes and mild bulging of discs which slightly narrow the ventral thecal sac. There is no mass effect on the cervical cord at the C5-C6 or C6-C7 levels.

So it would seem that the brachial plexus is fine.

I didn't realize this would pick up on the c-spine. I find it "interesting" that the use of the word "moderate" was used here for the disc generation. I've had a c-spine MRI before and it spoke to more of a "mild" situation and the neurosurgeon basically kicked me out of their office.

I wonder if C5 - C7 is producing this kind of elbow pain and tingling in my pinky? Wonder if it's worth a steroid injection in this area.

Only other exam at this point is an EMG. Would this pick up nerve compression that's taking place beyond the brachial plexus? From the shoulder down the arm?

I tell you I'm confused. I've got serious pain but MRIs left and right say nothing (unless there's really something going on in the c-spine).

KY

There is all kinds of info out on the net regarding referred pain from discs and spinal alignment issues. I've never been able to sift through it all and fully understand whats being said since a lot of it is contradictory in nature, but I've also heard from medical types that doctors don't really know all there is to know about these things. Has anyone mentioned a pain management doctor who does spinal injenctions? These can often confirm different diagnosises that other tests can't, in the hands of a skilled anesthesiologist. The facet joints along the spine can be a source of nerve irritation and pain. Can you run this by one of your providers?(again, I'm just a patient)