As I replied to your PM; the MRI to look at the dorsal root ganglia is available at Hopkins, but I don't know if they can do it on the cervical and thoracic areas. It would certainly be worth a try though. HOWEVER, if the results are positive for ganglioneuritis, you need to understand there is NO effective treatment to date. So in affect, you may find out why, but get no further in how to treat.

I agree with others that what you started out with (mucus) lead to intervention that may have put you where you are today. I would suggest continuing supplements to promote healing.

I haven’t updated this thread in a while to report on my status although I have started a few other threads talking about various things I’ve done. For the sake of keeping things centralized I’d figure I update this thread.
I had lumbar puncture 3 months ago which revealed a slight elevation in protein 12-45 is normal range and mine was 65. The rest of the test was normal. My Neurologist suggested we try IV Steroids. Shortly after that I tried three day course of Solumedrol Steroid IV 500mg per day followed up by a Prednisone taper.
I had no side effects from the IV steroids but interestingly enough my burning flared by the 3rd day of treatment. I had increased pain until I finished the taper.

I was thinking if it’s possible that would point to an immune response? I know for example Lyme diseases symptoms would flare on steroids as it lowers your immune system. I don’t have any know auto immune disease, AIDS, lyme, VZV etc..

I asked my Neurologist and he said 3 days on IV steroids would not lower you immune system enough to warrant a response

Six weeks later I went to John Hopkins to get an MRN of my cspine and Brachial Plexus. The MRN did reveal I had some nerve root irritation/neuropathy that was Bilateral. (Kinda of fits with my symptoms)

MRN Findings:

Bilateral Brachial Plexus nerve roots appear diffusely hyperintense with asymmetrical prominence of the bilateral C8 nerve root at the lower interscalene triangle just before trunk formation.




I talked to a few doctors and they are saying that it’s doubtful it confirms my pain because I don’t have burning in hands or arms, I don’t have muscle weakness, and my pain goes across C5-T1 dermatomes. They also said it’s possible just like people who have bulging disks in their back with no pain this could have been a preexisting condition. I am trying to get a hold of Dr. who read the MRN to confirm if other nerve roots other than C8 looked inflamed/damaged on the test. While it’s possible It seems a little too coincidental but at this point who knows. At the end of the day if it’s possible to find root cause I could potentially treat it. On a positive note, the MRN did reveal my DRG looked normal.

I still have the burning in my upper back shoulder area. I am currently on Lyrica 500mg and Namenda 20mg. I tried to titrate up on Namenda but side effects were not worth it. So I am now plan to get off Namenda completely.

I saw my pain management Doctor today and told him I am losing hope of getting my pain under control and also getting to the bottom of what is causing my neuropathy. I asked him about IVIG and he said it’s a low chance it would work but we could try it. He did say he he had a 19 year old male patient who had similar symotoms like me. They ran all the bloodwork, did a spinal tap it was normal. He did have something show up on his brachial plexus in an MRI. He said he did come in from IVIG treatments on a monthly basis and it improved the pain. By now he comes in once in a blue moon and gets the treatemnts as its not nessary to get them every month anymore.

He then told me he would rather try Ketamine IV and stay in hospital for three days to monitor me. If it gets a positive response I can go on low dose capsules. He said if I didn’t get a response I could try Lidocaine infusion. That is also a three day hospital stay as they would have to monitor heart and blue pressure. If that gave me relief he could the put me on Mexiletine. If that doesn’t work we could try IVIG.

I asked him about going on Nuedexta and he said he would rather try Drugs that he feels would have a higher probability of relieving my pain. He wants me to try Zanaflex and also if I have a bad flare I could take Nucynta. I realizes Nucynta can be habit forming but he wants to find out what drugs can reduce my pain. He told me its important to figure that out so we know what the best treatment options are for the future. I already know SSRI, SNRI, TCA’s don’t help my pain. GABA drugs help a little but need to be increased often to get same level of pain reduction.

I asked him about the safety of Ketamine and Lidocane infusions and he told me that he has done a lot over the years and they can be some temporary Side effects, under a controlled setting with an experienced team I shouldn’t have anything to worry about.

I was hoping some of you can chime in hear. Like to hear from anyone who has had Ketamine or Lidocane infusions or has tried Zanaflex or Nucynta.

BTW, Here is my burning pain zone