Seeking Understanding - 1 Year Ago, DX TN, 3 Months Ago, DX PN Leg/Arm, all Left Side
 

Hello,

More than anything, I need to understand what is happening to me. I'm trying to work my neurologist to discover the cause of all these Nerve related symptoms. Here is my story.

41 year old male - All Symptoms are on the left side.

Sept 2012 - I had a Sharp pain under my left cheek. Over the course of the next two months, I started to develop a more dull, throbbing pain, mixed with sharp "electric" pains all around my cheek and upper lip. At this point, the pain was occurring on a daily basis. I had an MRI that showed a blood vessel around TN's on both sides. MRI was listed as unremarkable at Reading and by a Neurosurgeon as both sides looked identical, yet my symptoms were only on the left side. Based on my symptoms alone, NS recommended MVD. I was waiting until a slightly better time to have the surgery. After the pain became consistent, I went on 300 Mg Gabapentin once a day. It muted the shocks and somewhat controlled the duller, burning pain. For the most part, on Gabapentin, it's manageable with low level headaches daily and sore muscles from the spasms.

July 2013 - I developed a strong, burning pain in my left testicle originally diagnosed as Epididymitis. After 4 rounds of antibiotics, it did not improve. From there, the pain moved to my seat area and into the ball joint of the back of my leg. I refer to it as the Pudendal Nerve Area. The pain is severely aggravated by sitting. It comes and goes, but when it is acting up, it is quite painful. My Neurologist ordered a complete Spinal MRI w/wo contrast. It comes back perfect.

August 2013 - I developed a strong, burning pain in my Sciatic Nerve from my lower buttock through the back of my thigh. I also developed sharp pains on the bottom and shocks on the top of my foot. Shortly after, I developed numbness/tingling in Femoral and Peroneal Nerve areas. I also start to feel like I have a sandbag on my thigh when I move. My Neurologist does a Nerve Conduction Study and EMG. She triples my Gabapentin. I only go to 2 x daily and have adverse affects including the inability to concentrate/focus and I become severely depressed to the point of being suicidal. While the additional medicine helped my TN disappear and my PN get better, it was not worth the adverse affects.

Sept 2013 - She schedules me for a follow up in a few weeks to discuss the test results. Her diagnosis is Paraesthesia. Between the testing and the follow up, I start having similar problems in my left arm. The sandbag feeling also occurs in my arm along with soreness. I have no trouble moving it. I would almost describe it as what I imagine it would feel like if your tendons shrunk and you were having to stretch them out. I also start having problems (at night) all over with skin sensitivity that is very uncomfortable when touched by clothing. It has a stinging/slight shocking feeling to it. She puts me on Lyrica 2 x daily, Gabapentin 1 x daily and schedules two pages of bloodwork.

October - At first the Lyrica/Gabapentin works great and I finally feel better. The bloodwork comes back. Everything looks good, A1C, B Vitamins, etc. My Vitamin D is at 17 and she puts me on 50K D2 once a week. After a few weeks on Lyrica, I was starting to feel foggy with the inability to focus and I had blurred vision. I stopped taking it yesterday. My head is a lot clearer, but my vision is still slightly blurred. The pain, tingling, numbness in my arm and leg are the worst they've been since this started.

Today I am at the point where I am waiting for the next shoe to drop. This has been a whirlwind and I'm struggling to keep a positive outlook. All my life, I've had severe allergies, food allergies and GERD. I take Proton pump inhibitors and attribute my low D to it more than this. The last 8 years, I've had super high triglycerides (770), but I've modified my diet to get them down (400). I need to recheck them as I've lost weight and have cut out most carbs and sugars in another diet modification. I was diagnosed with high blood pressure last year and started taking Diovan about 1 month before the TN episode. I've wondered if this is vascular or even autoimmune. I've also wondered if whatever is causing this could also be an aspect of my TN. I no longer want to have the MVD until I get a better understanding of what is going on.

I'm not sure where else I should go or what conversations I should have with my Neurologist. Any suggestions you may have would be greatly appreciated.

Thank You.

I feel your pain
 

Hi Nochance, I was very moved from reading your post. I don't think I can help you as I don't know enough. But I want to let you know I understand your feeling of " hopelessness, frustration and fear". I had been going through this journey since May this year. I share some of your symptoms i.e. altered skin sensitivities, tingling and burning sensations. Mine started from the lower extremities and now spread to my hands, face, sometimes back and shoulders both sides of body.

Like yourself I have sought help from my GP (2 of them in fact), full blood tests, hormonal screen studies, MRI on lower Lumbar spine and now am seeing a neurologist in November (GP is talking about getting a Brain MRI ) and EMG / Nerve Conduction Study as well.

I don't take any medication for PN at this stage. However, my GP told me to stop taking all my vitamins, especially anything containing B6. She indicated B6 could cause some of the symptoms. I take hypertension medication - Micardis, and she wonders if this also can cause PN symptoms. I did some research and it does mention Micardis could be implicated. so.... who knows.

It is a very lonely and scary journey we are traveling now. I do have a very supportive husband who has been listening to me - moaning and groaning but sometimes I can sense his helplessness and I tried not to burden him too much (then I tell him everything after many days of not telling him). We do fear for our future and at times, I was very depressed and was in a very dark place as well. Please talk to someone if you can trust and don't give up hope.

I am sure others will respond to your post and give you more information / suggestions than I can.

Take care and look after yourself. Yu Ping

There are a lot of things this could be--
 

--though, given your GERD proton pump inhibitor history, one does immediately wonder about nutrient malabsorption, which leads one also to wonder about the possibility of celiac/gluten sensitivity.

You also mention those very high triglycerides; there are some isolated cases of neuropathy associated with that. Are these the result of heredity (if you know)? In other cases it tends to be dietary; you don't mention weight, which can also contribute to nerve compression (in truth, neuropathy associated with hypertriglyceridemia also tends to be associated with pre-diabetes/metabolic syndrome in those whose triglyceride levels cannot be traced to hereditary factors).

There is a list of tests that many of us refer to that helps to suggest investigative avenues and is also good for tracking tests results over time--the Liza Jane spreadsheets:

www.lizajane.org

You can look that over and see what you've had done so far and what might be good to try and get done (it takes a very savvy physician to know the protocols and algorithms to try to diagnose neuropathy; most are not familiar with many of the serologic tests:

http://www.questdiagnostics.com/test...ripheralNeurop

--or the protocols:

http://www.aafp.org/afp/1998/0215/p755.html)

I was on Micardis for awhile, about 6 months. That was before I had PN. It cause me GREAT pain, muscle pain so bad I could not walk. I HAD to get off it.

I wondered if Micardis could have caused my PN but never found anything out for sure. The more I think about it the more I believe Micardis DID cause my pn.

Hi Stacy 2012,

There is a review of Neuropathy peripheral by studying 14,702 people who take Micardis ( I can't post the link here), but if you google ehealthMe, you will find this study or simply google the question - could micardis cause neuropathy peripheral?


Also go to drugs.com and there is information re the side effects of micardis. Peripheral neuropathic symptoms are on the list.

Yu Ping

Yes, micardis and thyroid are my two known choices for the cause of my PN. Who knows, maybe both. I figure at this point it doesn't really matter, it's now just a matter of learning to live with it. :(

thank you!

The Herpes Zoster virus is also a major culprit in chronic pain.

Typically it occurs only on one side of the body, but in some cases
can affect both.

If you had chicken pox when you were younger, you can get a
Herpes titre run to see if both simplex and Zoster are high (which signify active)

The amino acid arginine is a stimulant for Zoster replication and activation, so avoiding foods high in arginine may help. Balancing arginine with Lysine is also worth a try. 2 grams of Lysine to start, to see if there is any effect. If your titres are high, taking an antiviral for a while may help.

Here is a food table from a Herpes site:
http://www.herpes.com/Nutrition.shtml

Hi, what your experiencing with lyrica side effects is normal. I had them all at one time but eventually they all disappear, please give them a chance because the despair of this rotten disease and its affects will overwhelm you if your in constant pain :-)