Question: Hi,

I am very scared right now. I started having a freezing type of burning coldness in my back and arms while sitting at my desk on January 2014. (I was over 200 pounds overweight at the time and not getting any excercise) The symptoms came in my legs also but to a much lesser extent. I even felt coolness around the ankles. Now, the symptoms are more patchy in my upper arms and upper legs (legs are felt more when sitting) All of my blood tests are normal including electropherus serum which I just had completed by a GP. I saw a neurologist in April 2014 - he did a nerve and muscle test and told me that I had no neuropathy at that time. (which I found highly doubtful) He said that he had noticed some briskness - clonus of the hand but MRI in August only revealed multi-level degenerate disc disease and multi-level foraminal stenosis (C 4 5 6 & 7) due to carthrosis. There was also a slight bulging disc at T-8. I do believe that the upper lumbar spine was also scanned. Nothing remarkable was imaged. I had a few health scares in the interim (surgery for a uteran polyp which turned out to be benign - I had experienced post-menopausal bleeding in February 2014 and other symptoms which went away - had many trans-vaginal ultrasounds on pelvic organs. Also had rashes that came out on breast and under arms as well for about three months altogether - symptoms finally went away - had mammogram, ultrasound & tomography - saw three breast surgeons who told me that my symptoms would not come and go. Looks like they were right. There was what appears to be a scar which turned from red to brown on my breast (appears v superficial) that remained but did not change. Consulted with a GP who told me that it was probably just from a bruise (due to iron in the blood or something like that - it looked like a broken blood vessel months ago)
So now, I still have these neurological symptoms and am scared. I thought that it was subacute (because of the sudden onset in XXXXXXX 2014) paraneoplastic sensory neuropathy. Could it be anything else at all, doctor? I am going crazy. I am not diabetic, do not appear to have any vitamin deficiencies (my blood tests were all normal) I had a slight elevation in some platelet volumes a few months ago but they are normal now except for one that is almost normal. Blood counts have always been normal. I have had slight elevations in liver for years but just had an abdominal ultrasound and that was normal with the exception of a small gallbladder stone. I have also had a liver hemangioma for years. I would like to know what is happening to me. It looks like I am going to get bad news when I return to the neurologist ( he was on vacation) in mid-March. He told me that he can repeat the nerve and muscle test. I never mentioned my concerns about a paraneoplastic auto-immune cancer but I am thinking that is what will happen . I would appreciate your opinion v much and if it is that, is there anyway that I could expect a long-term survival -- I am wondering if there are long-term survivors anywhere. (I guess it would most likely be lung (I smoked for 20 years but quit when I was 41- I am 57 now) but could also be breast or ovary or much more rarely, something else.
I would really appreciate your opinion. I am on the verge of a nervous breakdown over this. I fear for my family.

None of the tests that you mentioned have been done. I will repeat the nerve conduction test when the neurologist returns from vacation. I need to reschedule an app on March 9th upon his return. I am dreadfully worried about paraneoplastic syndrome because of the sudden onset and distribution pattern (back, arms, and then legs - patchy on both sides - can be felt in arms more than legs most of the time but can sometimes shift -- felt in arms and armpits this morning so remained covered up and then when I got out of bed, it was actually felt more in my legs so it appears to be in all these places. I am not sure if my neck is affected but I do have some discomfort there at times.

I will get a copy of the nerve conduction test or EMG to forward to you upon my next visit with the specialist. I am just wondering if a neurologist from elsewhere can order these tests for me or do I have to do it all through a local physician?

Thanks so much for your valued expertise.

By the way, I have not had an ESR test yet, only CRP twice and that was normal. No platelet count abnormalities, only a few platelet volume tests (MCV (100.9 ) MPV (12.0) and Hematocrit (.452) but since then, they have all returned to normal except the TGMH which was at 33.0 last January but has returned to 32.9 on several blood tests including the most recent one. (normal range is up to 32.5) Not sure if this information is helpful -- it seems like I still have a lot of tests to go through.

To clarify: I am worried about the auto-immune form of paraneoplastic, doctor. (subacute sensory neuropathy) since the sudden onset and distribution pattern seem to fit. I pray that is not the case. I have not been tested with the paraneoplastic panel either.

Thank-you so much, Doctor. I will keep you posted. I only pray that I survive this.

I will have nerve and muscle test tomorrow, Doctor. Will keep you posted. Still scared due to research I have done-- I have felt this way for a whole year. I will probably have more or all of the answers soon...for better or worse. I am almost overwhelmed by all of this but will try my best to remain calm.

The nerve and muscle test was cancelled to-day because the doctor has the flu. My app was rescheduled for this coming Monday so I will forward you the results then. I am still afraid of this paraneoplastic sensory neuropathy because from what I have read, the treatment is not very effective and most (meaning nearly all) people die. Thank-you so much for your encouragement. Please forgive my negativity. I have faith in God and that is what is keeping me sane at the moment.

Info: I just read that the average delay time of diagnosis for a subacute sensory neuropathy a little over 7 months up to 26 months. (where the neurological symptoms preceded the tumor) 2 1/2 years was usually the ceiling for this type. (subacute or progressive) For all of the individuals in this study, their symptoms began and were predominant in the arms and often spread to all 4 limbs. The study also mentioned that 47-50% of individuals with subacute sensory neuropathy had a carcinoma. If you have any further feedback while I am waiting, I would appreciate it. (extremely sad at the moment.)

Thanks again for your valued input. I do agree with what you have said and will try to be patient until the testing is done. Of course the symptoms are always here to remind me that something is amiss and they are not garden-variety.