Nerve Compression and Damage

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inzTwoToneTunes

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Hey all,well according to my newest (5th) NCV I have multiple nerve compression in my legs with nerve damage in knees and feet. Not much my neuro offered other then wait 3-6 months! She said I could try exercise but have to be very careful not to re-damage nerves. My lower back, legs and feet are KILLING ME! I can not walk 5 minutes without extreme pain. My feet are ice bricks most of the day. Had a vascular/circulation test that was normal. Diabetes clear.She gave me a new diagnosis of polyneuropathy to go with BCFS, & fibro. actually she was not very nice. Told me basically to increase meds and go on some new ones. Said i was amped out again with anxiety and should think about getting a life. Well she really said "get therepy" and quit thinking about probs but sounded like get a life. Oh yeah my tinnitus is playing metallica in my head and my floaters added some new planets to go with the earth and moon that has been orbiting my eyeball for last 3 years.trying to figure out next step. Currently on Lyrica twice daily. .5 klonopin and starting tons of vitamins.i think I just vented. Sorry :confused: 3 years of this crap is getting O.L.D.!DD
 
Sorry to hear about your continued frustration to which I totally relate. You didn't ask for suggestions but the only way I have been able to deal with answers or attitudes I don't find acceptable is to seek additional opinions. Going to multiple doctors can be expensive and exhausting but when dealing with rare things I think going to the best experts may result in the finding one that has seen a patient like you and treated them successfully and you may be able to benefit from that unique insight. I haven't had miracles yet from my Dr. Engel but I am still convinced of his unique expertise in dealing with conditions like mine. You might consider sending him your medical records and seeing if you can get an appointment. Let me know if you want more info on him.
 
Double D,I have to agree with Jro, if pain is a major issue on you life, and your Neuro isnt listening you, *beep* the guy, go get some new one that can really help you. BTW why isnt Lyrica working for you, did your neuro explained it? Glaxo GSK, is currently getting approved a new molecule called Retigabine, they are now in phase 4 trials, maybe you can join, heres the link :As I understand, this molecule is so good that is going to make Lyrica and Neurontin look like aspirin.Keep Strong, Youll get better,Eduardo
 
Thanks for the info on a new drug. I would love to be able to take a pill that quieted my abnormally firing nerves. Klonopin does this a little but if you could totally quiet the nerves this would be a miracle.
 
Hi Jro,You know Im on the "Anxiety Team", but that doesnt mean I dismiss all the other possible underlying BFS causes. I personally think you can really consider switching from klonopin to a molecule than can hit the nerve misfiring more directly. Im too, on Klonopin ( Tapering down phase 0.5mg/day) + Zoloft (SSRI) and sadly, as you are aware, long term use of benzos isnt an intelligent choice.Dont know, maybe you can ask your neuro about some combo like this :- An SSRI o SNRI ( Not for anxiety, but for the misfiring, Maybe Cymbalta o Zoloft), they are tons of studies proving their effectiveness on this issue. Ive been 48 days on Zoloft and my tinglin, pins & needless, odd nerve sensations stuff are 99% gone, maybe you can add some alpha-lipoic acid 400mg /day (used widely on Peripheral Neuropathies, very effective I can tell you).- Add some Gabapentin or Lyrica, that are precisely designed for safer, long term use. If you use the search tool on the board, you can find that no one has ever been cured only with Klonopin or any other benzo, for that matter. Why? the reason is very simple, they loose their effectiveness with time, and are pretty addictive ( they mess with the GABA Brain receptors). On the other other hand, there are plenty of success stories (at least a high degree of symptom control) using first or second generation anti-seizure drugs. If your neuro consider a first generation anti-seizure, I think he will prescribe Carbamazepine (Tegretol) , that has been around for 30+ years and it is used in such nasty conditions as Trigeminal Neuralgia, commonly known as the "suicide disease", with high success rates.I guess my point is simple : there are far better, safer options than klonopin only. Im totally sure youll find the right medication or combo that suits your case, enhancing greatly your quality of life.Just my opinion,Ed
 
Hey all thanks.Ed- Intresting stuff. I wanted to try Cymbalta but insurance will not cover. I want off of Klonopin. The longer I go the worse I know it will be to get off of. What do you know about effexor? My neuro wants to try that. Thanks for the link. She wants me to up my Lyrica to 3x a day(200mg) right now on 2x a day. I dunno. Would love to be natural only.JRO. Thanks! Where is this doctor of yours?Sharon. Good question. I am embarrased to say I don't know. Why? My carpel tunnel is worse so I guess that means it is slower. My neuro keeps dismissing me when I ask questions. She just keeps pointing to anxiety and says the more I probe the worse I feel. It really sucks because there are only two clinics in town and I have seen both. My only options are the neuro clinic 150 miles away or possibly Mayo.DD
 
HI Double D,Effexor is on the same category as Cymbalta (SRNI´s) so therefore, the action action mechanism is very similar, they enhance the amounts of Serotonine and Norephinefrine, via inhibiting the reuptake of this neurotransmitters on neuron synapsis.Altough they are very similar, when pain is associated with depression or anxiety, or as an pathological entity alone, Cymbalta has proven to be much more effective than Effexor. But theres another one option DD, you should talk to your neuro about TCA´s (Tricyclic Antidep) such as Amitriptyline or Noritryptilene, that are extremely effective when pain is involved. TCA´s have been around for 40+ years and are very safe to use, also they are very cheap. Let me tell you how the pharma industry works, when a new molecule hits the market, drug reps are trained to make the physicians almost forget about the older, effective one. If it is New and Expensive, odds are that the Physician is gonna prescript it.The key is to have a very open discussion with your neuro.BTW, Ive been thinking with my psych in switching from Klonopin to Lyrica for long term anxiety management, along with my zoloft. Actually Lyrica is EMEA (The European FDA) approved for that with fantastic results. As a matter of fact, chances are that some time soon, Lyrica will be more used than benzos. I would love to hear all your feedback on lyrica.For sure, one of these options should manage your pain successfully :- Cymbalta + Lyrica- Cymbalta + Gabapentin- TCA + Lyrica- TCA + GabapentinKeep Strong,Eduardo
 
Eduardo,How does Klonopin effect your twitching? I have been using it since October 2008 (1 mg a day). I would love not to take it but it works and I need something.
 
Hi Jro,Good Question, Ive been 9 weeks on Klonopin and should be using it for, I think 3 more. Currently, Im barely twitching at all (Cant even believe how little fasics I have), even though Im on very low dosage right now (0.5mg/night)), but I think Zoloft is doing the trick, not Klonopin.But sadly my BFS is totally the "everchanging" type, let me explain :Phase 1. ( 6 Months)Hardcore 24/7 Big Leagues Twitching OnlyPhase 2. (2 months) Mild Twitching + Nasty Sensory StuffPhase 3. ( The one im currently on)Very Mild Twitching + Migrating Mild Joint & Muscle Pain + Zero Sensory StuffLuckily for me, I simply lose the "Surprise Symptom Factor" of BFS, nothing really caughts my attention anymore.Maybe tomorrow my BFS could be something like this :Hardcore Butt Twitching + Hair Paresthesias + Eye numbness + Nipple tingling Who Knows?Bye,Eduardo
 
DD - Sorry to hear of your increased symptoms. Is there a nearby YMCA that you can go and swim at? This is probably one of the few exercises you can do without muscle damage worries....I see you are in Oregon so it may be a while before you can get in any water up there. You mentioning your tinnitus - I realized I've had little of it lately and it was pretty awful at times. What has helped - I have been increasing my exercise. You have to go slow and be careful but you really need to get moving if you want to feel better. It was pretty painful at first but try some meditation, qigong, yoga (easy beginner's class) or tai chi. One of the old-timers said he used a dvd for qigong and found it quite helpful. Natural Rx.
 
Thanks for the feedback on Klonopin. I will talk to my neuro about the alteranatives you mentioned. I have been on it long enough that the side effects of getting off are something I will already have to contend with but I can't imagine that being worse than not having the drug in the first place. Without the drug I'd be out of work and without health insurance (not a good plan). I am also considering swimming or water aerobics but will have to wait until the school year ends. My current schedule doesn't leave time for a trip to the pool.Eduardo, I think the changing nature of your symptoms is interesting. My guess is it's evidence of some healing and maybe some minor reinjury/reaggravation taking place. I look at this as a very positive thing if it's true because it shows that healing is happening which is what makes it not sinister.Krackersones
 

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