friend looking for help
 

Hello all. The following below is part of what a friend of mine has written to describe his condition, likely some variation of Polyneuropathy, idiopathic neuropathy, Autonomic Neuropathy or all of the above. His condition has morphed into two distinct fields of 1) extremity pain and numbness and 2) dizziness and blackouts. As all of you who have suffered or continue to suffer know well, every day not knowing what is wrong or how to minimize symptoms just adds fuel to the fire, more anxiety, pain and suffering.

Please let me know if you have a clue for him about what might be the diagnosis and where to go for help.

Many thanks in advance.


General Symptom Review: My symptoms started 1 year ago as sudden, violent shocks to my inner thigh. The shocks seem to come in pairs with about 1 second between their vicious bites. The pain seems to strike the same inner thigh position in my left leg. The pain very much resembles being shocked by a live, 110V electrical wire. At first only 1 pair a day. This early symptom lasted a week then went away, returning every few weeks with 1 to 2 pairs of shocks per day. At about the same time, I noticed my hands were always getting numb. Mostly my left hand. Recent symptoms: Over the past 3 months the symptoms have evolved considerably. The violent shock pairs disappeared and have been replaced by a broader set of conditions. The pain is still centered in my left thigh but almost continuous. It starts as ‘hot’ pain that pours down my entire left leg like hot lead and then random courses of 3-15 second pain that start from a single point then seem to diffuse to larger areas. As the pain gets greater in the left thigh area, the same pain pattern migrates to my inner left arm area and low levels in my right inner thigh. As the pain increases, numbness and shakiness take over my hands. My entire legs and arms become completely numb. I feel extremely sensitive to slight variations to both heat and cold, which causes pain. I drool from numb lips. The pain increases with emotional stress. The pain is least when walking or riding a bike and worst when sitting or under mental stress. Under the stress of deep pain, shaking makes reading impossible and even talking difficult. In the last few weeks I have started to experience severe dizziness and have blacked out three times. In the worst instance, I blacked out for two hours and tried for three hours to stand after waking up. The dizziness does not stay in phase with my body pain and is usually worse at night. During dizziness I suffer blurred vision and ringing in my ears. My dizziness is worst when my head is tilted back. f I hold my head back for a full minute, I am nauseous and vomit. After blacking out I have had little to no vision for several hours. I do not recall any smells or taste sensations leading up to these episodes. The dizziness however creates significant anxiety that amplifies pain in my limbs. Extreme fatigue, loss of memory, and confusion are taking over most of my waking hours. My legs feel like lead and I am sure it's getting worse every day. I dropped all medications (see below) for the past 5 days but the conditions are persisting.

Hi Orolibre

Welcome to Neurotalk (NT). Sorry I can't help with a diagnosis for your friend - that is best left to the medical professionals. NT is useful for information, sharing experiences and support.

Regarding your friend's symptoms I notice you posted under the Autoimmune forum - does your friend have an autoimmune condition?

Has your friend sought medical advice/treatment for the blackouts? It is important that he do so. Blacking out for several hours is a symptom that should not be dismissed.

Your friend said he "dropped all medications" recently. What medications was he taking? what doses? and for how long?

Regarding the possibility of some sort of neuropathy - There are over 100 different types of Peripheral Peuropathy (PN) with as many causes. It is a process of elimination to try and diagnose a possible cause (or causes). Idiopathic just means that a cause hasn't been determined.

If your friend hasn't had any examination or testing for diagnosis the best thing would be to see his PCP for a referral for further specialist investigation.
It would be useful if he was able to put together some sort of record or history of his symptoms and progression - include any medication changes and other possible interactions. eg tick bites, falls, allergies etc.

If you have any further questions please come back and ask. There are people on here, with more experience and knowledge than I have, who would be able to help. All the best for your friend.

Hi Orolibre

Welcome to NeuroTalk.

Adding to what bluesfan wrote, abrupt cessation of medication is generally not a good plan. Tapering off, with advice from the prescribing doctor, is the way to go.

Thanks for the input Bluesfan.

He has seen doctors and done quite a few tests, exams, mri´s etc. He was told it is most likely an autoimmune condition. Thus far the more obvious autoimmune diseases such as Lupus, MS have been ruled out. No brain tumors. He is pursuing the Chiari Malformation possibility at a specialty center for Chiari but his images don´t show obvious signs of Chiari.

I was hoping to find someone with or that has had similar symptoms so as to possibly narrow down avenues to pursue for diagnosis and treatment. News is he had a particularly bad night last night with pain in his leg.

He will be looking more into Lymes Disease and other infectious illnesses, heavy metals, poisons etc also, to start ticking those boxes off as well.

My opinion is that emotional stress from losing his wife in a battle with cancer recently in March this year exacerbated an underlying autoimmune condition. He has always had nerve/anxiety issues manifested as grinding his teeth while asleep. That has been going on since we were in university together +35 years ago. Since his wifes´ passing, he has suffered what he describes as "horrible nightmares". He has finally consulted with a psychologist which seemed to help. His physical pain continues to get worse it seems and he has finally conceded that he needs someone around pretty much all the time. He is a very independent individual and giving in to letting go of "control" so to speak just makes his stress/anxiety level increase.

He is waiting on acceptance from the Mayo Clinic and also Dr Mericle in Nashville who has reported success with idiopathic neuropathy cases.

Blacking out lasting hours...is a serious thing.

Strokes, seizures, low blood glucose, low blood pressure, blows to the head, etc.

Here is a link with various causes...a more complete list.
http://www.medicinenet.com/script/ma...rticlekey=7662

All of them are serious and require a doctor to investigate fully.

Hi Orolibre

Thanks for the background info on your friend. Your theory of his stress issues activating an underlying autoimmune condition are quite probable. What he's been through may have exhausted his body's supply of essential nutrients leading to illness. He could have a deficiency in B12 which can cause PN symptoms. Has he been tested for this? As MrsD will tell you the results will often come back saying levels are normal when they may actually be low because of inadequate range often used. If he can find out the actual result number it is more useful.

There is an extensive thread on B12 deficiency at:

http://neurotalk.psychcentral.com/thread85103.html

From what I've read on this forum and other websites his symptoms do correlate with PN but almost at the extreme end with something else going on (the blacking out). It's good that his doctors seem to be doing a thorough search - however some autoimmune diseases can be very elusive for years.

It could also be a delayed adverse effect from one or more of the medications he was on. Has he been taking any statins?
Unless he has known exposure to things like Lyme disease, heavy metals or other toxins it may be worth eliminating the more likely candidates first - testing can be very expensive.

Neuropathy seems to present differently in everyone so while few may have his exact symptoms I hope the info you find here can help him work out possible causes. Unfortunately there is usually no quick fix for PN but finding a cause (or an underlying condition) may help optimize treatment.

It's good that he has you as a supportive friend during this tough time.

We do have a Chiari forum here if you ever need it Orolibre.
Arnold Chiari Malformation & Syringomyelia Forum

Thanks kiwi. He has been told that but under the circumstances where things were quite fluid, changing, going pear-shaped he made that decision. He is just desperate to find a way to feel half way human on a day to day basis which does not include a trip to the emergency room.

[QUOTE=Lara;1158110]We do have a Chiari forum here if you ever need it Orolibre.

Many thanks for that Lara. I see a few posts that I think will add to the conversation.