Just joined and recently diagnosed with PN
 

Hi. I just posted in the general discussion group and a member suggested I post here. My story is a bit long so please bear with me.

My symptoms came swiftly the end of February following a year of horrible stress that started with me being mugged and ended with my brother's unsuccessful cancer surgery also including other pretty stressful events in between. Two weeks after I came home from helping my brother they began. I have pretty constant burning, pins & needles, itching, bug crawling, random stabbing which occasionally includes my head. I have late night twitching- fasciculations in my legs that really disrupt my sleep at night. They are often more of a problem then the burning. I started researching and initially thought I had Restless Leg Syndrome. I began medicating most nights with Ambien, Xanax and or Ativan. Prior to this I had never taken anything except Ambien for sleep when needed.

I gave in and went to see a Neurologist in May and have been given a diagnosis of Idiopathic Peripheral Neuropathy after a Nerve Conduction Study which showed Neuropathy in my feet, MRI of my lumbar spine which showed issues I've had for years (stenosis and spondylolisthesis) and some very basic blood tests to rule out some of the autoimmune diseases. (There are so many!!) The doctor basically told me that he cannot cure me because he doesn't know what's causing my PN! He will gladly medicate my symptoms but that's it. From researching my symptoms it looks like I have both Motor and Sensory Neuropathy. Does that make sense and does anyone out there have both forms? A member thought that might be Polyneuropathy? In addition, I am very troubled by a shaking I got in my arms when I tried to work out my upper body with 3 lb weights. This also happened in my legs when I was taking my regular Pilates class. Some say it's from not working out as I stopped most of the things I was doing to try and figure out the cause, but I know my body and that is not what's going on.

I went to another doctor out of network and she ordered more tests (ANA, CRP-HS, TPO and numerous vitamins and some heavy metals) I do not have those results yet. I tested negative for Lymes Disease. I have an appointment with a PN specialist in September and I hope and pray we can get further then my original doctor was willing to go.

I have started taking a low dosage of gabapentin 2 hrs before bed. It works some nights and some night not. I realize I'm going to need to up my dose but it's only been 2 ½ weeks and I'm being overly cautious because I hate that brain fog that comes with these drugs. If any of you take this drug please share the side effects you have experienced. (BTW I just read that Ambien has PN side effects after long term use!)

I worked with a Neuro-muscular PT who told me some of my symptoms did not match up with my diagnosis. She urged me to try some things I love to get more data, so I went to my dance class. A few minutes into the warm up my calf started burning and felt like it weighed 100 lbs.

Life is very difficult as I never know how I’ll feel or if I’ll sleep. I've put off making plans and am afraid to exercise since my dance experience. I try to stay positive but it is so difficult. I worry that unchecked my symptoms will continue to worsen and I can’t imagine how I’ll deal with it.

I am so glad that I have found this group and hope that I can help some of you out there as well. Thanks for any input you can give.

To answer your question about gabapentin... I was extremely Leary if meds and fought tooth and nail to not take them for over a year. I had to give in eventually. I tried ciprolex snd that gave me a crazy, vibrating ear and major jaw clenching. Nortriptiline gave me very blurry eyes and didn't help much. I'm on 1200mg gabapentin now and it takes the edge off the pain. I don't think I've had any side effects. I've only been on for 6-8 weeks. I also recently started marijauna and it helps the crazy sensations better than anything ive tried

Yes, many of us have sensory and motor issues. I have hereditary sensorimotor neuropathy, with numb legs and hands as well as severe muscle weakness, but this has been progressing all my life and I am now 53.
This usually means that you have both small fiber and large fiber damage, the former governing sensation and the latter muscle weakness.
Right now I am on medication for pain and muscle spasms and spasticity. I have recently gotten AFO ( ankle foot orthotic ) leg braces which help with the instability in my legs.
No one can say how fast this will progress, generally it is a slow progression but there are exceptions.
Does anyone in your family have PN? Their symptoms may be milder than yours or have set in at a later age and still be related.

Hi Canagirl
Did you try Lyrica before you started gabapentin? My Doctor mentioned Nortriptiline but I tried Amitryptiline, the SE were skipped and rapid heartbeats. So I stopped it. It's too bad bc its used for helping to sleep too.
Did you get the private message I sent you? You should have received an email from here to your personal email saying you have a message..
Still trying to figure out how this PM thing works. I did get your emails tho..
Do you "smoke" the marijuana, or is it cannabis oil? I want to try marijuana so bad, I hear its good for pain, but THC gives me chest pains..bummer. This whole Idiopathic small fiber neuropathy sucks!!

Welcome Pinkynose.

My symptoms also started after a period of extreme stress. I have many of the same sensory symptoms, including the twitching and cramping as well as the "shaky muscles" while working out. EMG came our normal for me though - so no significant motor neuropathy.

Keep working with your doctors to try and find a cause. At the same time, work on some of the recommendations you can find throughout this forum. (Stress reduction, dietary improvements, exercise to the extent possible, and various supplements.)

Best of luck with your condition. keep us informed about how things are going for you. Unfortunately, this is a hard thing to "cure", but there are a lot of things that can help to make it manageable.

I have both motor and sensory issues. I have CMT aka Hereditary Motor Sensory Neuropathy (HMSN). There are many types and sub types of it. It is "hereditary". It is in the Peripheral Nervous System (PNS). That is everything outside of the brain and spinal cord. Some have feet/legs that are numb. Mine are not. It does not affect my hands but it may at some point. No one has that answer not even a doctor. There are over 70 types of it identified so far and there is no end in site. I have one of the more common types which lots of CMTers have.

Symptoms vary greatly even within the same family. They might be evident when you are young, old, or in-between. Or symptoms may not be that evident but you still carry it and can pass it on.

There is no magic bullet, supplement and the like. You deal with the symptoms as they come along. There is no cure/treatment for any kind of CMT at this time. There is much research going on.

Symptoms really do not come on fast. It just progresses as time goes on. I used to do anything and everything for years but not so anymore. Hope you find an answer.

Hi Pinkynose
 

Your story sounds very familiar. I have sensory/motor issues, still no cause appointed. I have spine degeneration, so I think it's hard to know for sure what is causing what. This is a great forum with a lot of good advice.

Hi Jennig. My MRI reads similar to yours. but i am not convinced that my spine is the total cause of my symptoms. Maybe a contributor. My current MRI was compared with one 10 years ago and it doesn't look much worse considering my age and activity. I have grade 2 spondylolysis at L4-5 4mm retrolisthesis at T12-L1. T12-L4 I have various degrees of disk degeneration causing mild to moderate foraminal narrowing without significant spinal stenosis. My potential problem is L4-L5 where I have an uncovered bulge, moderate to severe right and moderate left foraminal narrowing and mild central canal stenosis. I also have a small tear L5-S1. I have other stuff indicated but I just shared what I feel is most significant.

From what i see from your MRI results and have learned (I am not a doctor) it looks like what you have can lead to spondylolysis. Anterolisthesis is "the forward displacement of a vertebral body with respect to the vertebral body immediately below it." and the term is often used in place of spondylolysis. Spondylolysis refers to the degeneration of the spine which both of us have. I have no experience with conjoined nerve root although I think it's not that common.

What I can share is what NOT to do to make your spondylolysis worse. This is information I have gotten from PT's, Doctors and I am also certified in Pilates and have researched this subject extensively. BTW My spondylo has not increased since I was diagnosed years ago.

1) Never compress your spine- no smith machine squats or any exercise where you put a bar on your shoulder.
2) NO extention of the lumbar spine. (No back bends, etc.) Thoracic extention is fine just make sure it doesn't go into the lumbar.
3) Limited rotation of your spine. If you rotate your spine allow your hips to follow.
If you have any questions please PM me and I'd be glad to share anything I can to help.

*I just noticied you have PLIF L5-S1 Sept. 2013. Does this mean you had the surgery and if it's ok with you I like to know if it helped?