more than just fiber neuropathy? sensory CIDP? Other?

[meghanmc]

Hi, I’m 30 year old female and have been suffering with an idiopathic neuropathy, with an increase of symptoms, for the past 3 years. The problem started with lower back and leg pain (sometimes so severe I couldn’t walk), and then tingling in my feet/ankles and hands began about a year later. The tingling/shooting pains became more severe as time went on. About 6 months ago I started getting periods of nausea, severe rib/thoracic pain, strange headaches/ eye pain, and vision problems (what I’d describe as static vision – like TV on a bad channel) and transparent lines that streak across my visual field. At first I’d get long breaks between flare-ups but now it seems that I suffer on a daily basis, with an exacerbation of symptoms from time to time.

Thus far I’ve received no treatment for my problem other than the Prednisone I’ve ordered for myself on the internet (it works wonders but I’m fearful of side effects).

The tests that have showed some abnormalities are:
Romberg’s sign positive
Tandem walking mildly impaired
Deep tendon reflexes absent at ankles
Vibration severely impaired at toes, mildly impaired at ankles, fingers, forehead
Pin impaired in hands and feet
Skin biopsy: thigh: “skin with significantly reduced epidermal nerve fiber density, indicative of neuropathy”
Nerve tests: borderline low amplitudes in sural nerve, absent bilateral peroneal F wave responses
And I got a nerve biopsy, which I was told had “minimal abnormalities”  - NOT worth the agony!

It seems obvious to me that I have more than just small fiber neuropathy but until I can determine what it is that I have then I’m not going to get treatment.

Any idea as to what this could be? I’m desperate.

[tryinot2whine]

Question: think about the pain you feel when you hit your "funny bone".  Is your pain similar, but doesn't go away?  Eight years ago, I began having intermittent pain as described. After a year, the pain became pretty much constant, especially in my buttocks and legs.(In the past three years, the pain has presented in my upper arms and between my shoulder blades)
My medical history includes Cushing's Syndrome (fortunately cured by an adrenalectomy and cortisol, until my remaining adrenal gland 'kicked in). I had a uterectomy at 36 (after 20 years of incredibly painful menses) my surgeon said I had "the worst case of uterine fibroids he had seen in 30 years". I also have hypothyroidism (for 25 years).
I give you all this information because seven years ago, I was diagnosed with Fibromyalgia.  I have been referred to as a "textbook case" because the 3 conditions of my medical history I described have all been associated as likely precursors of Fibromyalgia.
In addition, I have had life-long bouts with depression, another symptom of the illness. As my illness progressed, I have been beset with Chronic Fatigue, severe Depression
confusion/racing thoughts and, in the past 2 years I have had my eyeglass prescription changed 3 times.  
I hope you Don't have it, but a competent doctor will test the Pressure Points and review your Medical History to confirm/dismiss the possibility.  Good luck!
P.S. Aside from medications, I have found jacuzzi to be quite beneficial!

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

It sounds like you are suffering from a neuropathy. Without the ability to examine you and obtain a history I comment on the cause of your neuropathy nor on how to treat it, but I will try to provide you with some information.

There are two types of neuropathy: large fiber and small fiber. A small fiber neuropathy involves the small nerves which supply the skin and sweat glands in addition to other structures. The typical symptoms of a small fiber neuropathy are burning sensations, though several other abnormal sensory symptoms can occur. With a small fiber neuropathy, the EMG and nerve conduction studies are normal. The diagnosis is made by skin biopsy and in some cases, when it is suspsected that there is involvement of the nerves to the autonomic nervous system (the system that controls sweating, bowel and bladder movements, sexual function, heart rate and blood pressure), a test called a QSART is done, which measures sweating function. The causes of small fiber neuropathy are multiple but may include diabetes, vitamin B6 deficiency, some autoimmune diseases, and in some cases unfortunately no cause can be found. Treatment depends on the cause, and symptoms can be treated with medications used for "neuropathic pain".

The other type of sensory neuropathy is called a large fiber neuropathy. There are several categories of this type of neuropathy, and there are many many causes. Sensory neuropathies can involve just one nerve or several nerves in the body. Some types of sensory neuropathies occur and progress very slowly, others sort of wax and wane (with flare-ups) and some are progressive. The causes include but are not limited to hereditary/genetic causes (such as in a disease called Charcot-Marie-Tooth, in which there is a family history of sensory neuropathy), autoimmune problems (such as lupus (SLE), Sjogren's, Churg-Strauss (in which asthma also occurs), polyarteritis nodosa, which affects blood vessels), and demyelinating diseases (such as CIDP). Vitamin B12 and B6 deficiency, as well as excess vitamin B6, can also cause neuropathy. Some toxins, such as lead, arsenic, and thalium can cause large fiber sensory neuropathy. Other causes include abnormalities of protein metabolism, as in a type called amyloidosis. In many neuropathies, both the sensory and motor nerves (the nerves that supply the muscles ) are involved, leading to sensory symptoms as well as weakness. The diagnosis is made by findings on the EMG/NCS, in some cases a lumbar puncture provides useful in formation, and in some cases a nerve biopsy. A normal nerve biopsy does not exclude a neuropathy.

The treatment of large fiber neuropathy again depends on the cause. Steroids are only used when the cause is felt to be inflammatory or autoimmune; in other cases, steroids can make things worse. Other immune-modulating therapies (therapies that alter the function of the immune system) are sometimes used.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[meghanmc]

Thanks for replying!

My questions are: what can "absent bilateral peroneal F wave responses" mean? I've already had multiple MRIs so I know I don't have any disk problems. What's left? And does the fact that I have abnormal NCV tests and already know I have small fiber damage mean that I have a disease that contains both large and small fiber involvement? What diseases include both? Would I benefit from something like IVIg? Since I was 27 when this started, what diseases that are neuropathy based would include that age? I have been told multiple times that I'm very young to have neuropathy since I'm not a diabetic.

To answer tryinot2whine's pain question--my pain feels like my leg is being cut off or all my ribs are broken, etc. It's the WORST pain I've EVER experienced. The leg pain is radicular--it's a sharp, shooting pain that goes from my back down my leg to the foot. I'm 99% sure that I don't have fibromyalgia--there are no sore spots on my body, etc--no muscle pain/irritation. All of my pain is nerve pain--nerve pain in my back, in my legs, in my head... EVERYWHERE. I'm on Lyrica, which helps a lot - was up to 600 mg a day (the max) but thanks to the Prednisone I'm down to taking it once a day - max of 150 mg. I take a ton of pain pills, ibuprofen, beta blockers (thanks to the mystery palpitations), I'm on stomach meds thanks to all of this drug intake... basically I'm a mess.

I don't have any vitamin deficiencies, I'm not a diabetic, I've had every blood test known to man kind, and I think at this point I'm done testing. I don't think there are any more tests to be done. Therefore I'm stuck!

thanks
meghan