Update on lil ole' me... Finally saw Neurologist for 1st time today - Neurology Message Board

tyler7 · 04-08-2004, 05:39 PM

Hello All...

As some of you may recall from my history of posts, I haven't had insurance in quite some time, and my PM doc (who agrees to see me on a reduced cash basis) referred me to see both a Neurologist & Orthopedic Surgeon, oh, only about... 5-6 months ago

I have multi level DDD in the neck, and a pinched nerve in my right shoulder (idiopathic brachial plexitis), and for several months now there's been essentially nothing else my PM knew to do for treating me, he's just been literally refilling my Methadone once a month (5mg, 2-3x/day). Well, I still don't have beni's, but am trying to change many stagnant things in my life right now and moving forward, so said screw it, I borrowed the $175 cash from family to be able to see this Neuro for the 1st Eval appt (since funds are limited, I thought best to see him instead of the Ortho, since I could only pick one, and I knew I wouldn't need surgery, so...).

After talking and doing a thorough neuro/phys exam, he happily told me he knew just what was wrong w/me. It was basically what either my PM had already told me, or what I'd read online (aka Parsonage Turner Syndrome, etc)For one thing, he feels very confident my DDD (including 1 herniation) has NOTHING to do w/my pain symptoms in my shoulder, that I could even have that surgically fixed and he wouldn't expect it to improve what I feel everyday. So in the end, as far as that, I basically "dont have a problem there", since he believes none of my symptoms are a result of it. But he did say, while it's not unheard of, it's unlikely that someone would still have my level of pain this long after the onset of the nerve trouble. That he typically sees with my kind of problem, that because of the inflammation of the brachial plexus, patients usually have acute pain at the beginning, but not what I'm experiencing this far afterwards. So that was a bit of question.

So what's the punchline? Well, as I've even read online before, there's essentially no way to really "fix this". That the average time it seems for symptoms to dissipate in people that have this is about 2yrs. Though I am over 6 months in already. But you simply have to "ride it out", and let it heal up. You can only really manage any pain that you have (it can though just up and disappear very quickly, it's happened to people before). In fact, usually the patients of his that suffer from this, he doesnt' need to see them more than a couple times.

Among my history, I told him of my prior use of Topamax. He gave me lots of free Neurontin samples to try. Especially after my complaints of Topa, he assures me that Neurontin is supposed to have not-as-bad effect on cognitive abilities (which, there's no way I could do this data entry gig w/those s/e's aagain). It may leave me a little tired and/or unbalanced. Also I'm already aware that I'll likely gain weight, wheres w/Topa you typically lose it. Which is fine, I could use more pounds, I just need (& have for awhile) to better distribute and tone it. He wants me to increase every 3 days or so, reaching up to 2400mgs a day. Usually when doing a trial w/a patient, that's where he takes them to, but if it's working, he's had people on as much as 5000+mgs/day. At the 2400 mark is where we'll decide to move onto another drug, if not working. He also very nicely gave me about 12 extra Lidoderm Patch samples (but didn't seem that big on them - like, if I hadn't asked for them at the end, despite having told him earlier that I used them and got relief, I don't think he would've volunteered giving me more).

So, that's where I end up. I didn't even make another appt w/him. I'll still see my PM for Meth (as the Neuro said, "well I don't really do MethaDON <as he pronounced it> but I guess you know w/a narcotic, you should only be getting it from one person") And it's not like I expected to get Meth from both docs, of course not, I just didn't know if I was supposed to go completely over to him and stop seeing my PM, but it sounds like he may be just a slight bit opiophobe, but don't know that for sure. Perhaps if he was my only option for docs and I was in much more daily pain, that might've happened. So, I will start trying the Neurontin hoping it helps, and let time do its thang. I suppose now I know for a fact that there really is nothing I can basically do to "treat" this.

Well this turned out a little longer than I planned (though that seems to be a pattern with me...

But, I never expect anything of anyone, I appreciate it that you've simply took it upon yourself to read this whole damn thing

Thanks everyone

Shoreline · 04-09-2004, 08:03 AM

Hey TY, Try to look at the positives, You have a pretty firm DX, that you have an expectation to recover from. 2 years sounds like a very long time to have to put up with a painful condition that is supposed to just disaapear at some point. Did you have a stretching type injury of the brachial plexis. I've met a few others with BP problems and it sounds pretty miserable.

The BP is a very significant nerve bundle and if you have ever seen folks that are born with damege to the brachial plexus from rough deoliveries you can tell by the one arm that never really grows. I'm trying to tactfully describe the folks you may see that have one normal arm and one significantly smaller barely useful arm is usually from BP injuries at birth. I worked with a guy that had the problem and that's how I learned about BP injuries Our freind Bob dole has a BP injury from Korea, Bob dole thinks you will get better.LOL That was my on line Bob dole impersination.

I do hope you have better luck with neurontin. Most likey you will function well without cognative problems up to a point and then you just can't increase more because of onset of impairment.

I would think your Pm doc would stick with you through this perriod, especially having followed his instructions, "being a good boy" and getting the neuro confirmation of your DX although many folks never really fnind out what their true DX is, so you ahead of the game. You can start looking for adjunct therapies for this type of injury if there are any.

It kind of sounds like Tri geminal Neuralgia, My mom went through about 2 years back in the 70 of very intense pain and then it just cleared up. Hopefully you will be as lucky.
I'll talk with more later, Shore

injured betty · 04-09-2004, 09:21 AM

The Neurontin is a very tricky drug. We started out at 300mg a day and ramped up pretty quickly to 2700 mg a day. Both of us ramped up 300 mg more every three days.

We are both pretty loopey, sideways, and find it hard to concentrate. Short term memory is shot. As there is just the two of us we have to take notes as neither of us can remember to remind the other of anything.

It made me lethargic (thus the weight gain part) and my husband manic. He starts a lot of projects around here but forgets to finish them. He is like a whirlwind.

When I get up in the morning I feel totally whacked. The bad part is, I have to take another dose. I am taking 900 mg three times a day. We were shooting for 3000 mg a day but we stopped at 2700.

It really is working, though. My lower back pain is gone. My husband has a pinched nerve in his neck so he is not sure as he has stopped all activity that inflammed the nerve.

It is not working for my synovial cysts in my butt dimple though. I think that i am going to have to have those removed.

Be really careful with the Neurontin. It blindsides you. If it works, it works, if it doesn't it doesn't, there is no half way with this drug. And, if you get into an accident while taking it, it is driving under the influence.

I wish you luck.