| Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 Likes: 1 | Hello everyone:
Well I've quietly been developing numbness and tingling in my hands and up my forearms over the last year or so, maybe 18 months. Haven't brought it up here because I didn't think it was related, and the initial diagnosis both by my regular doc and a rhuematologist (this after negative tests for nerve damage) was something called Raynaud's Phenomenon, a circulatory condition resulting in sensitivity to cold.
This week I was back at the neurologist for another round of nerve conduction studies, and he found damage. He's calling it "Polyneuropathy" and it seems to involve the sensory - touch - nerves and not the motor nerves. I had blood drawn and numerous tests will be done on it.
I'd be interested to hear from anyone in the group who might have expeienced similar symptoms. The numbness is quite pronounced and I have trouble with small motions - buttoning, using a TV remote, turning pages, etc. The tingling is especially bothersome and it rarely goes away. It feels as though my hands and forearms are continually halfway to coming back from falling asleep.
Of greater worry is that one of the tests being done is something for a little goodie called "Anti HU antibodies", which arise when the body is mistakenly attacking nerves instead of a malignant tumor. The neurologist opined that at first glance my problems may have arisen back when my body was fighting the SCC in 2009. But the more I read of these Anti-HU fellows, the more I'm concerned that, should I prove to have them in my blood, they may be indicative of a tumor in my lungs. And as we all know, sometimes this can happen a few years after SCC. Add to that that for the last... oh... 6 months or so I've had a dry cough that ebbs and flows.
Thanks for listening.
(OH and since I didn't have chemo, the neuropathy was not a function of that treatment, as I'm aware it can be)
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I have neuropathy the past 4 years, basically from chemo, but underlying medical conditions could have been accelerated, like from diabetes, illness, being bed ridden, other medications. I did the nerve conduction tests with the cattle shock prod, and what did I learn, I have nerve damage lol. I could have told them that. I have been trying to find out how I was paralyzed from my waist down for 10 months, and still with some loss of movemrnt. Could have been weakness, but my torso, arms, had no paralysis, but hands have the neuropathy. I think losing 110lbs in several weeks from cachexia or cancer wasting syndrome, has something to do with it. I looked into Gallium Barre Syndrome, which could have been caused by a stomach virus or respiratory infection, both which I had, and immune system starts attacking the nerves, but I don't think I'll ever find out. I saw a FDA announcement, which I posted here, that certain antibiotics can cause permanent neuropathy. There are also 20 different types of neuropathy.
I hope you find answers. Good luck.
I just looked into the polyneuropsthy, and it is related to gallium barre syndrome or is a subset. It's rare, but the flu shot can cause it.
Last edited by PaulB; 08-31-2013 10:05 AM. Reason: Flu shot
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Neuropathies, neuralgias, etc., are all related to late effects of treatment. Radiation and/or chemo is the most likely cause and since you did not receive chemo, radiation could be the culprit. Curious if your neck hurts and if you have had a spinal MRI.
Radiation damage can mimick about any neuromuscular disorder. Reynaud's-like symptoms and even thoracic outlet syndrome symptoms can be caused by scar tissue around the base of the neck which would cause many of the issues you are experiencing. In my case mostly my small finger and ring finger goes numb for hours at a time on both hands. Even muscle weakness in the blood veins can cause similar symptoms. The main problems are vaso-restriction for veins traveling through any scarred areas; likewise arteries. In addition nerve damage from the radiation prevents or restricts current flow.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 Likes: 1 | Paul and Uptown: thank you both for your kind and very intelligent posts. Up - yes, I had a cervical MRI and it was negative. My neck doesn't particularly hurt, just a little stiff and sore and (most likely) permanently numb on the side where I had the dissection.
Paul: I do get flu shots, and have also read about Guillain-Barre.
I have faith in my medicos and I'm figuring I can handle anything. Would really rather not have to handle lung cancer of course. So I guess anything less would be a blessing! I hope to know more this coming week when the blood work comes back.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I hoped Uptown would add, he is very knowledgeable. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Good luck with your tests David. If you can find a provider and your insurance covers it you might want to consider ART (Active Release Technique). You can google and find the website and from there find a provider. They work on nerves mostly and muscles. Great relief from the numbness, tingling and pain.
Also consider neck massage working mostly on the scalenes. They are muscles around the brachial plexus nerve bundle and are known to cause referred pain head to toe.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 Likes: 1 | Uptown - great suggestions, thanks a million. I'll definitely look those things up. You're knowledgeable and a personal inspiration!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | I have minor neuropathy in the soles of my feet and in my hands from chemo. My Oncologist keeps telling me that it should go away but I think he's blowing smoke. My Radiation Oncologist told me that she's had cases where acupuncture worked to relieve it and I have done a web search and found that there is a B vitamin combination (similar to what David2 mentions on a different post), from several sources, that has worked for some people. I've ordered it and will post my results
Last edited by LeftyS7; 11-16-2013 07:32 PM.
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 Likes: 1 | Good luck, Lefty. I haven't been back to the acupuncturist since my last post but I'm going on Weds. However I did get my thyroid results back and I'm slightly high on the rapid TSH. The doc therefore upped my synthroid from 100mcg to... drumroll please!... 112 mcg. I can't imagine this will make much of a difference and look forward to discussing it with him. If he ever gets back in the office.
Thanks, all.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | David, please let us know how you make out with the accupuncture apt. Not many have done this but from a couple that have Ive heard good results.
PS.... My thyroid meds just went from 50 to 75. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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