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Old 12-12-2011, 11:44 AM   #1
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Is there a point to more testing?

I have symptoms of periferal neuropathy. Gabapentin reduces the symptoms, but leaves me Zombie like, so having trouble balancing the benefits with the costs.

Hubby wants me to do more testing and thinks the neuropathy is due to one too many falls off a horse, or blows to the head (I wear a helmet when riding, but did get kicked to the head while feeding, and have fallen and hit my head hard enough to have some bad concussions even with a helmet).

I am tired. Going for tests and seeing doctors is a big withdrawal from my energy bank. I did have a cranial MRI done, and get the results next week. I have had blood work (all normal other than positive ANA), seen nutritionists (I eat well despite being chronically underweight for my height), been to physio (therapists don't feel they can help with the neuropathy), been to acupuncture (didn't like it and it didn't help), and tried soaking in a hot springs (that felt horrid on my legs and I though I was going to pass out).

Is there a point getting other tests done? Or should I just have my doctor prescribe different meds to see if another one helps without the side effects? Going through life as a Zombie seems hardly worth it.

 
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Old 12-13-2011, 06:45 AM   #2
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Re: Is there a point to more testing?

This is an excellent question.

My PN attacked me in 07..in the next 3yrs or so saw 4 different Neurologists and had zap/blood tests, MRI, Spinal Tap and an Ankle Nerve Biopsy...all to tell me "I can't treat you until I know why you have PN"

It has probably been 2yrs since I saw my current Neurologist due to what you asked.

Just tired of the bs/no answer issue.

I'm going to try and go probably next month just for a check up.

Hope you find the answer to your questions and a pain free day.
J

 
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Old 12-13-2011, 09:35 AM   #3
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Re: Is there a point to more testing?

Would you mind indicating what are your symptoms? Perhaps you have a problem in your spine that is causing the symptoms of neuropathy, something that might be fairly easily dealt with.

 
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Old 12-13-2011, 12:33 PM   #4
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Re: Is there a point to more testing?

Part of the problem is I don't know what symptoms are related or not, so it gets complicated.

Back in 2000 I developed silent migrains (no headaches). In 2010 they started to come with headaches in the form of pressure/pain behind my right eye. Daily Advil keeps them away, but of course that is not good to do, so I am now trying Axert instead.

In 2003 I came off a horse hard, and smacked my head into a very thick wood post. Helmet was on, but I still ended up with a slow bleed concussion, and was very out of it the next day.

Then in 2003/2004 I started to have some digestive issues, and some foods made me feel dizzy. Lots of tests, no diagnosis, so labled as IBS, and I avoid certain foods, which helps emmensly.

Starting in about 2006 I noticed my legs would fall asleep very easily if I sat funny. My Dr told me it was something with my knee joint. Also was having a lot of trouble sleeping, and wrestling with depression. My Dr told me to get more sleep....

In 2008 I had numbness in my right arm and major upper back pain. Physio diagnosed as T4 syndrome, and physio keeps that in check.

Starting in 2009, my feet started to feel crunchy, and I didn't want to walk barefoot ever, and avoided going up and down stairs.

In 2010 I noticed some weakness...although more that I felt weak, than that I was actually weak, and would feel nausous a if I lifted something heavy (such as hay bales). Also had people commenting on my red cheeks.

Dec 2010, I was kicked in the top of the head by a horse. Neck was locked up and possible had Post concussion syndrom. Physio helped a bit, but the eventual thing that unlocked my neck was a slip on the ice. I also fell off two horses in 2010. I don't normally come off that easily, so not sure if it was because I was taking on tougher horses, or that my reflexes were off.

Progressing fairly rapidly from March 2011 on, my feet started to fall asleep much more rapidly upon sitting. Feels like I am walking on stumps that are incased in shards of glass. Odd feelings up my legs too; sometimes ice, sometimes pressure. Cats walking on legs feel like little pokey paws stabbing me. Have the achy flu skin. Hot water feels extra hot on my legs and the motion of water is sensory overload. Dizzy a lot. Hands tingly, particularly after typing (I like to write/blog). Trouble focusing eyes. Greatly cut back on activity and hardly riding now (don't feel safe). Maybe ride 5 times a week vs 5 times a day. Still look after the farm though.

Dr first speculated Fibro (but couldn't tell me what symptoms I have that led to that...I do not have the pain pressure points), and prescribed Elavil. It did nothing, although still wants me to take it at night. Then added Gabapentin. 2 pills a day "fixed" my hands at first. 3 pills a day makes my symptoms manageable (although if I do too much, like walk through Wal-Mart, my legs are back to hurting), but the Gabapentin makes me feel like a Zombie and my number 1 thought is when I can next nap/sleep. I have cut back to 2 pills for the week so I can think more, but my symptoms are back with a vengance. I just couldn't handle feeling like a zombie and was getting seriously depressed.

I have a lot of trouble focusing and being ok in a crowd. Things seem to move fast around me. I think I have some PTS from being kicked in the head as I mini panic when something moves fast by my head, and my vision kind of blanks.

The blood work I have had done has all come back normal, other than the positive ANA. I eat well. I am fairly active (albeit not nearly as much as before!). I am 5'10" and 130 lbs...put on 5 lbs on the medications. My reflexes vary day to day,but my general strength is ok. I can still lift and carry a 50lbs bale of hay.

My physio therapist did some tests where he had me move my spine in different ways and then test my sensations. Nothing changed or increased my isssues so he does not feel it is my spine. As well the fact that my hands, AND legs are affected.

I am an anxious person by nature, and different stressful events have preceeded all the new conditions, so I wonder if this is my body's reaction to stress. If so, it is a useless reaction!

ANy opinions and advice is welcome.

 
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Old 12-13-2011, 03:29 PM   #5
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Re: Is there a point to more testing?

I would tend to agree with your husband, since you have had several falls, you might have some injury to your spine or neck, which will produce symptoms of neuropathy. It would be well worth it to have an MRI
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Old 01-03-2012, 10:31 AM   #6
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Re: Is there a point to more testing?

Quote:
Originally Posted by CatonLap View Post
I have symptoms of periferal neuropathy. Gabapentin reduces the symptoms, but leaves me Zombie like, so having trouble balancing the benefits with the costs.

Hubby wants me to do more testing and thinks the neuropathy is due to one too many falls off a horse, or blows to the head (I wear a helmet when riding, but did get kicked to the head while feeding, and have fallen and hit my head hard enough to have some bad concussions even with a helmet).

I am tired. Going for tests and seeing doctors is a big withdrawal from my energy bank. I did have a cranial MRI done, and get the results next week. I have had blood work (all normal other than positive ANA), seen nutritionists (I eat well despite being chronically underweight for my height), been to physio (therapists don't feel they can help with the neuropathy), been to acupuncture (didn't like it and it didn't help), and tried soaking in a hot springs (that felt horrid on my legs and I though I was going to pass out).

Is there a point getting other tests done? Or should I just have my doctor prescribe different meds to see if another one helps without the side effects? Going through life as a Zombie seems hardly worth it.
my exact same question. I am from GA USA and have had a barrage of tests of neuropthy. Feel so hopelessm and helpless. Am of the impression our md's know so little about it they do not want to take up time on you. I have been in a wheel chair for five years. Now medicare will not pay for the option of a lift power chair. I cannot walk at all. Feet and legs and lumbar in such bad shape. Spinal stenosis, aracknoid cyst on spine nd neuropthy has eaten me up. Take hydrocodone for pain. and sometimes with Ibuprophen and xanax.

 
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Old 01-03-2012, 12:26 PM   #7
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Re: Is there a point to more testing?

Yikes, you are much worse off than I Hazella! My husband booked me two doctor's appointments right before Christmas, and both say the same thing; if medication is helping, then go with that. Hubby is convinced there is a magic cure such as chiropractic and is unwilling to accept when the Drs tell him that it can't be that simple as both legs and hands/arms are affected. I really want to just accept and work on managing with what I have now for a while so I can find peace and acceptance in the present.

Taking away the Elavil and keeping the Neurontin has helped my mood at LOT. Still overly tired and days when I miss my nap are hard to get through! The cats like my tendancy to nap more though...have to look on the bright side!

 
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