[jenng]

Hi there. I have been looking on the forum for a few weeks and really appreciate all the great information. My peripheral neuropathy started in my early 30's (I am now 43.) At the time it was just pins and needles/numbness that would come and go in the left side of my face, hands and feet. Occasional burning sensations by my achilles tendon, but nothing I would label as pain. At the time, I had a low-positive ANA and antiphospholipid antibody test, along with slightly drier eyes and mouth. That, along with a family history of autoimmune conditions pointed to a possible diagnosis of Sjogrens Syndrome with negative SSA-SSB antibodies. A rheumatologist put me on Plaquenil, aspirin and fish oil.

Things seemed to be stable until 2009, when I had an extreme period of stress with my mother diagnosed with incurable cancer. I began having more constant of the above symptoms, along with stabbing pain in/under my tongue. I had "perceived" weakness in my left thumb, muscle twitching, frequent headaches. A new neurologist diagnosed me with left-sided atypical migraine. He prescribed amitriptyline, verapamil, then added Vimpat (an anti-seizure med.) This did help the headaches and facial symtoms. Again, things seemed to stabilize until this November.

It was then that I had constant pain show up, in my left foot. It literally feels like my foot is in a vice. My foot cannot feel comfortable in a shoe. I have fatigue and increased pain with too much standing, muscle cramps and twitching. I have continued to have the left hand symptoms, but very mild compared to the foot.

I should mention that I have had several MRI's over the years--no lesions suggesting MS in brain, neck or spine. My lumbar spine showed several things--DDD, annular tears, slight spinal stenosis. We did a couple of steroid injections to see if that may be the issue, but they did nothing. I have had several EMG's as well, showing slowed conduction in the sural nerves. My auto-immune bloodwork continues to be periodically checked, and has always been negative for everything--except for the very first time. I continue to have normal motor neuro exams. My most recent EMG of my lower extremities in January, the psysiologist could not even find my sural nerves.

So I am waiting to repeat the EMG's-this time from a NMD doc at a teaching hospital. It seems the only things I haven't done are a spinal tap and a nerve biopsy. My current neuro and rheumatologist are basically shrugging their shoulders. I want answers, but it is slowly sinking in that I may not get one.

Thanks for reading my really long post!

[Susanne C.]

I am sorry that you have not have more replies. Generally it is the accepted wisdom on here to avoid a sural biopsy at all costs, it can leave you with permanent pain and nerve damage. Many of us, myself included, have turned down the spinal tap as unlikely to yield answers after bloodwork, EMG, and a much less invasive and more informative skin punch biopsy are done.

But yours appears to be an atypical case with asymmetrical symptoms that are unusual, so I do not know what to say about the tests. I would ask, since you have had some symptoms for what seems like quite a while, does anyone in your family have neuropathy? If you are not diabetic, have a slowly progressing neuropathy with shortening of the Achilles tendon, it does sound like it could be CMT, a hereditary neuropathy.

Next time at the doctor mention that, and also ask for a skin punch biopsy.
I hope someone more knowledgeable chimes in. I have advanced CMT, type 2, with axonal degeneration.

[jenng]

Thanks Susanne! I do hope others chime in as well. Yes my symptoms are primarily left-sided, although I do have decreased sensation on the right leg as well. Just not pain. At this point is definitely is idiopathic PN.

I have wondered about CMT--no one is my family has been diagnosed. But my father, who is 74 now, has had bilateral carpal tunnel-like symptoms with both hands/forearms. He had an EMG to confirm. He has had hammertoes on both feet for a long time. He denies any neurological changes to his lower extremities. I had read that CMT can vary widely from person to person. I've got 2 daughters--really don't want that to be an answer!

I am scared, frustrated, feeling fed up!

[jenng]

Also--I did have low normal tests for B-12 and Vitamin D. I have been corrected for those, taking B-12 shots each month and vitamin D 4000mcg/day. My neuro was good about that--he said that "normal" levels of these can be too low, so wanted to get me on the high side of normal and keep me there.

[littletexan77]

Hello Jenng! I too am sorry about the lack of replies - it really is uncommon. I can't help you though, and maybe others feel the same. I can relate to some of your pain and say Welcome! though! LOL My peripheral neuropathy symptoms didn't start until after a fall I had on Aug of last year. I am suffering from the burning, pain, and loss of muscle control in my legs and feet, all the way to other symptoms in EVERY place of my body! I have spondylolysthesis ( I don't know how to spell that) and spondylosis in 2 places. Anyway, lots of pinched nerve groups! That is the second leading cause of peripheral neuropathy - diabetes being the primary cause. I am only on 1800mg of Gabapentin and have Norco for the serious outbreaks of pain. Clearly my pain dr is not taking me seriously and I will be leaving him very soon! Anyway, I can wish you the best of luck, and hope you find your answers (and some relief) soon. Best Wishes!

[Susanne C.]

Originally Posted by jenng

Thanks Susanne! I do hope others chime in as well. Yes my symptoms are primarily left-sided, although I do have decreased sensation on the right leg as well. Just not pain. At this point is definitely is idiopathic PN.

I have wondered about CMT--no one is my family has been diagnosed. But my father, who is 74 now, has had bilateral carpal tunnel-like symptoms with both hands/forearms. He had an EMG to confirm. He has had hammertoes on both feet for a long time. He denies any neurological changes to his lower extremities. I had read that CMT can vary widely from person to person. I've got 2 daughters--really don't want that to be an answer!

I am scared, frustrated, feeling fed up!

Your father's symptoms are significant, I believe many a neurologist would make a CMT diagnosis based on what you have said. Bilateral carpal tunnel is fairly rare, most people get repetitive motion injuries based on using one hand more than the other. It happen, but it is also likely to be a sign of a different problem, add hammertoes from early middle age and you have a trail to follow. You often have to do your own detective work. How are your toes? I am 51 and while I began losing the ability to move them several years ago, they have only recently become more deformed. I do have muscle wastage in both hands and feet. Very skinny ankles too.

It sounds like you have researched CMT. Do you feel like it fits? I am moderately disabled except on level ground, where I am strong, and very liable to muscle pulls when dressing, showering, etc. but I am accepting of it and the inevitable progression. I was clumsy as a child, always had high arches, walked on the sides of my feet. Started developing numbness in my toes in my early 30's, pain in my legs and arms in my 40's, numbness is now above my knees. EMG /NCS shows large fiber neuropathy with muscle loss, skin punch biopsy shows severe smal fiber neuropathy.

I understand being worried about your children, I have three biological adult children, my eldest son definitely has it, at 27 he needs ankle bracing, falls a lot, and is beginning to lose his piano skills, which were considerable. The other two, 29 and 26, do not appear to have symptoms, but my daughter has a baby and is expecting another.

[ginnie]

Welcome to Neuro Talk. You will find alot of folks who have compassion. It does sound like you are having a great deal of trouble. Being on Neuro Talk may help provide some hope, and maybe some answers. When a DX doesn't happen it makes living with these conditions really ruff. It is also possible to post near where you live, and someone here may know of a physician who will listen and try again to find out what is wrong. Have you considered Mayo clinic, or a teaching facility? I went to Mayo for my DX, and that got the ball rolling toward the answers I needed. I wish you all the best. Never worry about the long posts. Neruo Talk is here to help. Glad you found us. I wish you all the best. ginnie

[Susanne C.]

I noticed in your question for Mrs. D that you have restless leg syndrome. I have had it since early childhood. It is a marker for CMT.

[mrsD]

I'd try the Morton's Epsom lotion on those hands for your father.

Since I bought this new version this month, I've used it on the backs of my hands, and they are much much better. Less swelling, and numbness. No numbness upon awakening either.
Use only a little dollop on each hand.

I've had bilateral carpal tunnel for over 30 yrs. It was alarmingly severe when I was pregnant. Today it is liveable, so I have not tried surgery. Magnesium opens up the circulation by dilating small blood vessels. Given that the Morton's (available at WalMart for $5.98/8oz) is so inexpensive it is worth trying IMO. Most people are low in magnesium and do not eat the RDA for it.

[jenng]

Thank you all for your replies. mrsD, I am going to Walmart today for the lotion. Love the idea of naturopathic help. This may be a coincidence, but since I have been taking vitamins (Bcomplx-D3-B12) for the past two weeks, the pain in my foot is much better.

Susanne--I have been reading! I am going to the U of CO for neurodiagnostics. I am confident she will order the CMT testing after my EMG. My ulnar nerves were normal on my EMG in Jan. My arches have been normal but seem to be changing since the only shoes I can wear now need arch support or my feet hurt. Toes are straight.

My girls--oldest is 15. She has normal arches. She has had an intention tremor since she was 3. Peds doc said this commonly lessens as they grow, but she still has it. She has great fine motor skills. Slow runner, tires easily from that kind of exercise. Has had IBS-type symptoms for a couple of years that she takes Prilosec for.

My youngest, 11, has high arches. She had weak hand strength as a young child that has improved with OT in school. She still is not very strong in her hands opening things etc. No trouble walking/running & no foot deformity.

Can I just say how much this sucks?!?