Neurologist

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Update:

Saw the neuro today. After the tests, minus the sleep study, he said that I have peripheral neuropathy (nervous system dysfunction) in both legs. He believes that the root cause is probably a long term side effect of the chemotherapy treatments I had over 26 years ago. Since I've never had any broken bones or serious injury to my legs, I'm inclined to agree.

After I got home I did some research and found that neuropathy is indeed a side effect of the toxins of chemotherapy drugs that I had been given or by compression of the nerves by tumors. In my case it had to be the toxins because there were no tumors in my legs, although I did have a Lymphangiogram. (Google it if you're curious)

He wants to do another "special" blood test through Athene (to confirm I guess) and has prescribed Neurontin, to start with 300mg a day at first and increasing slowly.

I'll start it this weekend or maybe the next, if it makes me loopy I'd like to have a few days to gauge the effect before I have to be at work, especially since I have a 45 min drive to/from work.

I'll be doing some searching through the previous discussions later looking for Neurontin, but please feel free to offer any advice/experience here, especially the success stories.

Aiken
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Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

I think neurontin is pretty much the standard treatment offered for peripheral neuropathy, so it sounds like you're on the right course if that's the problem you have.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

I think he's right about the neuropathy. I've experienced other long term side effects of chemo. I can't complain though because I'm still alive.

I was 17 when diagnosed with non-Hodgkins lymphoma and the only side effect that really caught my attention back then was the hair loss. The bald look was not in vogue back in the early 80's and it certainly didn't look good on me. I have one photo of that period and believe me, it's a closely held picture :)

It occurs to me now that technically I don't have RLS. The few studies I look up do link RLS with Neuropathy, and describe very similar symptoms, but didn't exactly say they are the same malady.

Hope you don't mind if I stick around here though. Maybe I will find a cancer survivor forum to which I can contribute my experience and wisdom about the long term effects.

ViewsAskew
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Post by ViewsAskew »

It can be hard to weed out the two and many of us have both. I think the key difference is the fierce need to move with RLS. With neuropathy, at least in my limited experience (I get it mildly), I jerk away from the pain of the stinging-like feeling, but I don't need to move it again and if I didn't move it, it wouldn't matter. With RLS, the feeling just builds until I move.

You're welcome to hang around as long as you like :D . The more the merrier in our band.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

I Just Can't Stop
Posts: 3
Joined: Fri Apr 07, 2006 7:52 pm
Location: Arkansas

Post by I Just Can't Stop »

The wife and I both were sent to a Neurologists and she was diagnosed with RLS and myself with PLMD. Our appointments were scheduled at the same time so we were takes in together so we got to see and hear what was done or said to each other. All the wife did was set there and swing her crossed leg ( I've watched her do this for over 30 years) and answer a few questions about was that natural or was there an uncontrolable urge to move them and when she answered uncontrolable. I thought he was going to have calf and called it a text book case of RLS diagnoses made. Me on the other hand sat there still a church mouse discribded my symptoms and we were both started on all the drugs to see which ones would help and none did.
We had both been taking hydroconone for a couple of years before this and was working very well so I made the mistake of asking if we could just stick with what we knew worked and he saw a red flag with me. We both stumbled onto the codine to relize it helped. I had flu and was prescribed cough syurp with codine told
Family DR. it helped with what I thought was RLS so he prescribed hydrocodone. We're very blessed with our Family DR.
Back to Neuro he sent me for sleep study found out study was to see if there were any siezurs causing limbs to jerk. No problem there just PLMD. I laid there without taking any meds and legs jerked through a full quarter of football game and the was told if I did not go to sleep the study would have to be redone. So I so made the mistake of taking a full dose to go to sleep and should have just taken a half so I could go to sleep and symptoms would have shown earlier. Sorry so long but just wanted to share our exprience

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

This will be my third day on Neurontin (300mg a day). It's been unpleasant but not unbearable.

The first day I was light-headed and fatigued. Last night I made the mistake of taking it an hour before heading upstairs to bed hoping to get a head start, but the dizziness washed over me and I couldn't even hold my head up to brush my teeth. The night before I'd taken just before laying down so I didn't notice the dizziness.

The dizziness passed in a couple hours and I wasn't light-headed today, so I choose to see that as a good sign. Plus it gives me an excuse to take sick days from work.

So far I will say it's reduced the intensity of the creepy crawlies, but hasn't knocked them completely out and I still can't get to sleep with the Neurontin alone. Hopefully when my body gets adjusted and the dosage is increased, it will give me complete relief, something I haven't known in three years now.

Sojourner
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Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Wayne, I have been on Neurontin (Gabapentin) for about 30 mos. (currently at 1800 mg). It is my second try with the med as the first time did not go well. But, the second time around has been quite good for my rls/plmd. I experienced no major side effects but some minor such as ringing in my ears--which went away. It does not make me the least bit sleepy and I wish it did. I take it in combination with some vicodin (as needed). Glad you are seeing some benefit. Best wishes. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Neco
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Post by Neco »

Soj, glad you got your RLS situation improved

Maria
Posts: 43
Joined: Sat Jan 24, 2009 11:56 pm
Location: Eagle, Idaho

Post by Maria »

You are all so knowledgeable and articulate. It’s great to have a place to learn through socially constructed experience (edu-babble - sorry). I thought I understood my rls (family history, symptoms increasing over the years) but never considered that I might now be experiencing peripheral neuropathy with rls until the light bulb went on reading this thread.

I had a total hip replacement two and a half years ago and have degenerative disc disease and scoliosis (common lower back pain and stiffness, now increasing with age). I’m wondering if those conditions constitute another layer. I had never distinguished between the unceasing need to move from the sudden leg jerks – severe enough to knock myself out if my knee ever reached it to my head!

My doctor suggested supplementing opiods with Lyrica, and I guess that’s why. It hasn’t really helped at this point, and I’m interested in keeping it as simple as I can for as long as I can. But I reckon it’s something to consider for the future. Anyway – it’s always easier to handle something if one understands it.

Thanks once more for your help here; it takes time to read and craft sensitive replies as you do. Good luck Wayne!

ViewsAskew
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Post by ViewsAskew »

Maria, you may even have a third layer: PLMW - periodic limb movement while waking - medibabble for I kick/jerk during the day instead of during the night.

The RLS are different from the PLM are different from the PLMW are different from the neuropathy, etc.

Hard to get all the layers figured out and get them treated.

I'd hazard that because there is so much brain chemistry involvement that the layers analogy can also be applied to anxiety, RLS anxiety (the anxiety I get when I have the RLS vs the anxiety I feel at other times), depression, etc. Hard to know what is causing what and how to treat it successfully.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Had to break off the initial treatment after 3 days due to the fatigue and dizziness and the fact that I needed to be present at work. So I restarted the Neurontin last Friday.

Now, after a full week on Neurontin, it's working out pretty well. The symptoms are down to a very low intensity annoyance localized around my ankles instead of my entire leg (and I have long legs). Simply moving my feet briefly will alleviate it, I don't have to get up and walk around.

I can even fall asleep normally now. By normally I mean without any Xanax or other sleep med, but by just laying in bed until I drift off to sleep...Imagine that! I still wake up early, but I feel more rested. I think it could just be the pattern I had gotten into that I still awake early, hopefully that will improve.

I'm still experiencing mild dizziness that comes and goes. But it's getting better each day. I'm still at 300mg at night, the dizziness might come back when the dosage is increased. It's worth it though, I'm determined to get to the maintenance level. I haven't felt this good for waaay too long.

Maria.... I'm glad you found my edu-babble informative. It's definitely been worth it to go that extra mile with seeing a neurologist and getting the tests done to get a correct diagnosis and an effective treatment. Good luck to you.

Sojourner
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Location: USA

Post by Sojourner »

W, I am so glad that you are experiencing some relief and hope it continues and things only get better. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Saw my neuro yesterday for a checkup. After 6 weeks of being on Neurontin and reaching the prescribed target of 900mg per day, I'm doing pretty good, much better than before.

I have no trouble sleeping now, am off the Xanax and the initial dizziness and drowsiness side effects have abated.

He sent me home with an extended prescription for the Neurontin and told me to increase it if I felt it necessary but be sure not to go over the maximum daily dose.

I feel so normal being able to go to bed and just drift off to sleep and wake up to the sound of my alarm going off. Life is pretty good at the moment. Now maybe I can concentrate on other things I've wanted to get done but couldn't work up any enthusiasm for because of sleep deprivation.

ViewsAskew
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Post by ViewsAskew »

I just love reading posts like this. I'm so happy for you, Wayne. May everyone who isn't in sleep nirvana also achieve it in the near future.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SquirmingSusan
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Post by SquirmingSusan »

That's excellent, Wayne. Let's all hope that it continues.
Susan

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