Neuropathy -- Am I A Candidate?
 

Folks,

I'm wondering if I'm a good bet for some kind of neuropathy. I've been battling shoulder and now elbow pain for a year + and have seen several orthos, physiatrists, chiropractors, etc. with no help or relief. It's just now, one year later, that a recent shoulder specialist indicated that I may have "nerve" issues.

Here's a little history:

* Initial Injury: About a year ago, I felt something "give way" in what I thought was my back or traps. I felt like it was a muscle pull in my trap area. Didn't think much of it and ignored it for 2-3 months. This then morphed into more of a posterior shoulder pain.

* MRI Results: Got an MRI which showed posterior partial tears in my capsule ligaments. Orthos didn't think much of it.

* Original Diagnosis: "Scapular Diskinesis." Something that PT should solve they said. Given a very low "significance score" in terms of the injuries.

* Physical Therapy: Made it worse. New burning type pain on my scap and armpit joined the party. This pain seemed to seep into my upper arms at times. I also felt some wierdness in my fingers. This drove me to get both a cervical MRI and EMG.

* MRI/EMG Results: Zippo. As a result, Neurosurgeon's continue to boot me out of their office.

* New Symptoms Soon After: Twitching muscles around the scap. This then blew up all around my body (after searching the internet and finding that this is a symptom of ALS...great), but was most prevalent around my right shoulder blade and mid back area.

* New Symptom Most Recent: Severe, ACUTE elbow pain. I was about to have arthoscopic surgery on my shoulder and all of a sudden I couldn't bend my right elbow without getting excruciating, debilitating pain. Funny though, it's fine if I have my elbow at my side, but if my elbow is positioned away from my body and I bend the arm...BAM! This pain petrifies me. This pain is located above the elbow, not below which makes me believe it is NOT tendonitis related. I also believe it is more towards the inside of the elbow, but the outside of the elbow (and tricep) get into the act.

* Latest Diagnosis: Went to a shoulder specialist at Beth Israel in Boston and he didn't think anything was structurally wrong with my shoulder and thought my issues were more nervy. Now I'm on neurontin and seeing some improvement in the elbow issue.

After doing some research online, it seems like a lot of what's going on could line up with Thoracic outlet syndrome or maybe ulnar or radial nerve entrapement. At minimum, I feel like there's got to be something going on in terms of nerve compression.

Does this at all lign up with anything specific?

Do any of you share the same symptoms I have?

I'm really at a loss. I feel like I need to start over. I was just about to have shoulder surgery, and now with this new elbow pain I'm thinking that's a rotten idea. Who should I seek out at this point? A neurologist?

I need to start "Book 2, Chapter 1" of this ongoing saga.
Thanks.

KY

I have long standing shoulder issues. In the course of seeing numerous doctors, some have suggested Brachial neuritis. At the same time, the ortho who did surgery on my shoulder also tells me that there is a nerve bundle associated with the shoulder. I have had the excrutiating elbow pain which appears on the outside of the elbow. It hurts so much that I can't bend it when its flaring up or even if its just doing nothing, like in a neutral position, and then at other times its fine. Bizarre to say the least, but its been happening to me for over ten years now. I also get a lot of nerve pain of a burning nature in the upper part of my arm of the affected shoulder. After reading your post, this hit home with me, FWIW, I had glenoid labral tears with shoulder instability and my shoulder would dislocate and render my arm useless. This came from a car accident and I guess that is why the nerves are all messed up, but this is what I've been able to deduce from all the doctors whom I've seen. I seriously went through a bunch of doctors before getting the proper diagnosis and a competent doctor to get it fixed, but I had a long time of suffering with this before they got it right. I don't know if my story helps you any, but its something for you to research ref. the brachial neuritis. Best of luck to you and take care.

I saw a number of neurologists, none of whom diagnosed my neuropathy correctly, and it turned out to be fairly standard SFN in feet and arms, so just seeing any neurologist might not be the best way to go. I would recommend a centre that specializes in neuropathy. If you go to the Neuropathy Association website they list a number of centres that specialize in neuropathy.

Hi I am sorry about your pain and also left without a dx. It can time to get a dx which I know is frustrating. I was going to also suggest RSD. I have PN and RSD. Some of the symptoms and how you developed this lean to RSD. I am no expert but you may want to read up on that as well. Yes I would see a neurologist. Who is rx the neurontin and what type of specialty sent you for the other tests? The neurosurgeon? I am glad you are feeling benefits from the neurontin.

EE,

What did they diagnose you with?

I've suspected a shoulder problem, maybe a labrum tear, but so many orthos and other have evaluated me and can't find much wrong with my shoulder. There's some partial tears in there, but most say "nothing abnormal for a 42 year old."

The funny thing is that I was scheduled to have shoulder surgery in less than a week. Reading up on some of these conditions, if I indeed have one, it sounds like surgery could make them worse.

I feel like I'm in the early stages of...something. It's been two weeks with this elbow pain and no sign of it letting up. The neuontin has cut the edge off, but I know it's still there.

Any advice anyone can give me to help diagnose what's going on would be of great help. I'm going to see a local neurologist in the southeeastern MA area. Also going back to my ortho to explain the situation and have the elbow checked out.

Should I look into some other type of doctor?

What's really annoying about this situation is that for months I've been trying to explain this "other" type of pain I have on the scap/armpit/upper arm along with muscle twitching and spasms. Pretty much ignored. It wasn't until I basically can't move my arm that I'm getting attention.

Really hoping my initial injury caused some nerve entrapement of some kind that needs to be released.

Thanks.

KY

SFN? What's that? I don't see it listed.

The closest neuropathy center is in NYC, not too close. Was hoping there was one in MA.

Any other avenues that make sense?

I've seen on the TOS thread that many get diagnosed by cardiac surgeons.

I just want to waste as little time as possible. God knows I'm going to walk into this neurosurgeon's office and get about 10 minutes of their time...where they don't actually listen to me...and probably recommend an EMG that doesn't detect anything.

I want to walk in there with a list of diagnostic demands. Understanding what you've been through, what would you ask right away? What would you have them do? I feel like I almost need to slap these doctors to wake them up so they will listen and go the extra mile.

KY

Ugh. Just read up on RSD. The one thing that hasn't emerged or doesn't present is any kind of hand symptom. And that seems to be what everyone checks...see if I have cold hands...discoloration...strength issues. Nope. Although, maybe it will progress that way. I have been getting a jolt now and then to the thumb.

I recently got a 3rd opinion from a shoulder specialist at Beth Israel. He's the one who said a) shoulder seems fine, and b) you're symptoms are more nervy. So, he said go neurontin. Thinking back on this, I'm now wondering, "why the heck didn't he refer me to a neurologist?"

As for the other tests:

* MRI Arthogram of shoulder -- ortho sent me.
* Cervical MRI -- Neurosurgeon. This neuro actually indicated that TOS is a possibility, but he didn't think so.
* EMG -- 2nd ortho. Came up clean. (Of course).
* MRI of chest / Lat area -- Clean. Did this because of the burning scap/armpit pain that also seems to extend down below my armpit into my rib area.

So frustrating. What started out as a discomfort or annoyance in the trap area migrated to the posterior shoulder, then midback/armpit, then upper arm, now the elbow.

I need to stop this in its tracks. I feel like I'm at the beginning stages of ONE of these neuropathies based on initial research.

KY

Ky, I messed up the other reply. I should have written Brachial Radiculitis. Search for that and read up on it. My diagnosis was Glennoid Labral tear. The dislocation happened when I was trying to get a diagnosis. It wasn't provoked, it just happened. A neurosurgeon gave me the Brachial Rad. diagnosis several years back. I have burning pain in the scapula, the posterior shoulder, and the upper arm. The elbow comes and goes. When its bad, it can stay bad for several weeks before it calms down again. Then it eases up for awhile before the cycle repeats. I've been seeing a pain management doctor who has performed some radio frequency ablations to try to control some of the pain, but I still get the upper arm, elbow, scapula, and posterior shoulder pain. It seems as though its difficult to control. I use a tens unit and I'm on meds, but none of the anticonvulsants.

EE,

Thanks.

There are certainly some things I have in common with brachial radiculitus:

* Sudden onset of symptoms.
* Right shoulder primarily.
* Trauma: Think this is my original injury.

The wierd thing is, I have pretty good strength still in certain movements. For example:

* Bicep curl with elbow at side: Did 25 lbs x 10 reps yesterday
* Lateral Raise: Did 15 lbs x 10 reps.
* Narrow Grip Press Machine: Scared as hell to do this because I bend my elbow, but it's in tight to my body, but could do a low weight (70lbs).

So there's strength, but then there is EXTREME pain when I a) move the elbow away from my body, and b) Bend the arm at the elbow. I also have a low level, irritating, somewhat burning pain on the shoulder blade/in armpit/down rib.

Now this elbow pain just emerged two weeks ago so it may be that other symptoms may emerge. Based on everything I'm reading, it seems like a no-brainer that I have something fouled up in the brachial nerve complex.

Are there any specific diagnostic tests I should push for to get this diagnosed? Besides an EMG?

Thanks.

KY

I don't know. I also have neck issues so its hard to discern which tests are for what. I've had multiple MRI's, multiple EMG's over the years, and a discogram. I've seen an orthopedic doctor and a neurosurgeon and it was the neurosurgeon who arrived at the diagnosis. I exercise my arm and shoulder daily, but certain movements will aggravate the pain. I do these exercises to maintain use and prevent a frozen shoulder and muscle atrophy. Its been stressed by all the doctors I've seen and I can't do any overhead lifting. If it were me, I'd go back to a good orthopedic doctor and discuss it with them and see if seeing a neuro surgeon might be the way to go or look for an orthopedic doctor who specializes in shoulders.

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)

EE,

This is a great idea and something on my "to do" list.

While my C5-C6 and C6-C7 issues seem to be mild, who the heck knows, maybe it's enough to cause irritation. It all seems to line up:

* Spinal nerve root issues
* Pain that extends to the scapula and armpit
* Ulnar issues
* Pinky numbness

You'd think this would be a simple test too. Just rule it in or out. If pain goes away, AH HA. If it doesn't, ok spine is out.

It's got to be one of a handful of things here:

1) C-Spine related
2) Nerve entrapement below the brachial plexus (since the MRI rules out the plexus).
3) Some injury I can't remember around the elbow that is creating an issue that is completely separate from the shoulder pain I've experienced for a year.

May look to see if I can find an anesthesiaologist referral from the neurologist...although he may be loathe to do this prior to my EMG test this coming Friday.

Really starting to rule out RSD...there's just no evidence of hand weakness, swelling, discoloration, etc. My ortho thinks this is remote. Actually mentioned that I don't have the "personality type" for it...whatever that means.

EE...appreciate the thoughts. Thanks.

KY

Best of luck to you. Feel free to PM me if you like.

Ok...here's a new symptom I'm picking up in the last 48 hours:

* An involuntary twitching or tremor in my middle finger.

Huh?

Any thoughts on this?

This happens at rest not when active.

Jeesh.

KY

Its hard to say. I lost 80% of the functions in both hands at one point and I never had a tremor. Still don't.

But everyone is different. If yours is in the neck area, a compression there, there would be different signs.

My neuropathy was compression at the wrist.