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Spreading Sensory Peripheral Neuropathy - What next?
Hi all, this is my first post, but I've been lurking for a couple weeks as I look for information and guidance. I am a 55-yr-old woman who has been experiencing slowly worsening Sensory Peripheral Neuropathy. I received chemotherapy for colorectal cancer from November 2018 - April 2019. I developed neuropathy in my hands and feet at dose 10 of 12. I had pins and needles and numbness constantly. The neuropathy remained strong through 2019 but seemed to be easing up/going away during the summer of 2020. My husband and I hike a lot and while the neuropathy was still present, it was less intense and at times I could not feel the tingling in my feet.
Last year in May, I began to notice that the neuropathy was back and beginning to move up my legs and increase in intensity in my feet and hands. Over the last 12 months it has crept up into my pelvis, and from my hands up to my shoulders; it is now on my face with my tongue and lips occasionally tingling as well. My bladder and bowel function is affected already, and on occasion I can feel a "buzzing" in my abdomen. Thankfully the neuropathy isn't particularly painful aside from stabs of pain in my feet at times. But it can be uncomfortable.
I do not take gabapentin as whatever mild relief I get isn't worth the additional sleepiness and fogginess. In addition to the neuropathy, I have experienced a cognitive decline, and struggle to find words at times. I was referred to a neurologist, and have had MRIs, extensive blood work, and an EMG. The EMG showed that the neuropathy is sensory only. MRIs and bloodwork have all been normal. I do not have diabetes.
My neurologist sent in a referral to Mayo Clinic. I received an email at the end of last week informing me that Mayo will not see me. I'm pretty devastated to say the least. I know it's not personal, and I'm normally a fairly upbeat person, and can handle a lot, but all this waiting as my neuropathy gets worse is taking a toll. Given that it is a holiday weekend, I have not heard back from my neurologist, and have had too much time to mope while trying to find answers.
Any of you have a similar story with spreading neuropathy? I understand that this is likely idiopathic; but at what point do you stop looking for answers? I know there are other specialty clinics around, what has been your experience?
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No I didn’t have any heart burn but I always make sure with my supplements that I have some food in my stomach.
Also, after taken, you can always eat a couple of crackers.
Hi my rheumatologist thinks I have neuropathy because my legs burning sensation and I have OA, He gave me medications to treat it but I have so much side effects that I can’t take it. My PCM gave me 600 mg, fenophofen / day and prednisone 25mg/night those are great for me as of now. PCM said we can change if no longer needs in the future. Fenophofen is expensive drug most insurance companies have not paid it she said good RX has honored the prescription @$38.47 for monthly medication. Good luck with your health.
I experience the same unpleasant sensations. I was diagnosed with metastatic breast cancer in November 2008. I had chemotherapy including Taxani. Also from 2008 to present I take Letrozole (aromatic a inhibitor for hormone dependent breast cancer) I have numbness/pins/tingling sensations in lower and upper limbs. Also, chin, lower/upper lip numbness. EMG shows sensory only peripheral neuropathy and carpal tunnel syndrome.
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1 ReactionWelcome @raluca64, I'm sorry to hear you have neuropathy caused by your chemotherapy treatments. You are not alone. You might find it helpful to scan through discussions and comments by other members with chemo induced neuropathy. Here is a list of the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=chemo%20induced%20neuropathy.
Have you done any research on complementary or alternative treatments for the neuropathy symptoms?
'What's next', my question exactly. I was diagnosed in the spring of 2020 with Idiopathic Sensory Motor Axonal Neuropathy. As a long distance cyclist for years, I considered myself somewhat of an athlete. It's taken me a long time to accept this new reality and my new identity. There is so much that the doctors don't know, very much in contrast to their projections as the great prognosticators. In my case, I've received no specific guesses of what may be next, just that there will be a decline. So, I take my gabapentin (side effects and all, still worth the relief it provides) and have learned to be grateful for what I can do. I wish you the best. Maybe not knowing exactly what tomorrow may bring is a kind of gift as it keeps hope alive.
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6 ReactionsI do not know where you live. I went to see Dr Anne Oaklander a research neurologist been studying neuropathy since before 2015 at Boston General Mass on the Brigham campus. I live in Texas and wanted answers. I found out my severe tremors are from the motor neuropathy. My sensory neuropathy has affected my bladder, kidneys, thremoregulator is broken ( it can be 192 and I am freezing I carry a cardigan sweater in my car at all times along with a blanket) and heart (autonomic neuropathy - called CAN from small fiber neuropathy). They are now testing me forCIDP. I posted on this website all the labs I had to have drawn before I saw her. I supplied three years of labs showing mine is autoimmune neuropathy. I test negative for everything.
The rheumatologist did ultrasound on my wrist and hands and they found rheumatoid nodules. Strong family history (grandmother, mother. Sister. Aunt. Nephew born with juvenile RA still having problems as an Adult) but my labs show 13 and to be positive you have to test 14 or higher. I also get blisters on my hands. I can’t take antiinflammatories aka NSAIDS due to the stomach ulcers and nodules along with the gastroparsis ( from neuropathy). Dr. Oaklander answered a bunch of questions I had that no other doctors could answer.
Some people have tried alpha lipoic acid up to 1200 mgs. I was having some luck but had an allergic reaction to it. Dr Oaklander told me if I lived in one of the states she practices in she would have immediately started IVIG therapy on me. It takes at least six months to start working. You have to be on it the rest of your life. I was originally on gamma globulin therapy from age 10-18. I fell off my parents insurance in 1980. Dr Oaklander said I would not be in the shape I am in today had I remained on gamma globulin therapy (IVIG). We are working on getting me on the therapy. IVIG keeps it from progressing and has showed to reverse some of it.
I can’t take seizure medications, lyrica, elavil aka amitriptyline, or neurotin. I have had allergic reactions to all of them including alpha lipoic acid. I have swelling in my legs and hands ( hot and stiffness -can’t move them very painful last all day). I have noticed when I eat sugar, caffeine and bread I am worse it ups my pain. I eat very little red meat because I throw it up too heavy on the stomach. I ate pizza (only one slice) one night all that was on it was pineapple ( I can eat pineapple buy itself no problems)the pain started before I went to sleep. I woke up the next day in so much pain. Unfortunately, what you eat increases the pain. I take a pen and piece of paper to keep track of what triggers my pain and increases the nerve pain.
I like chia tea. A friend of mine from India showed me how to make it instead of buying Starbucks. I use honey to sweeten the tea. My tea I use 1/8 cup for 12 cups of tea. I only leave it in for 4 minutes. That way the caffeine is not strong and it does not release so many tannins(causes bitterness). Chis tea has many natural anti inflammatory spices.
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1 ReactionWhat you are experiencing sounds very similar to my experience. But in addition to the testing you received, they also did a spinal tap on me suspecting and confirming I had CIDP. They immediately blasted me with daily IVIG and prednisone which stopped the advance and gained some recovery. That was in 2019. I have been on IVIG ever since and recently SCIG which have kept me stable. Plus PT. I have taken gabapentin for 7 years for something else and just adapted to the side effects. My life is about 3/5 as active as I was-I was super active before this-but it’s a good life.
No Balance since overdose in Hospital 2009. I did not believe, so I saw 6 ENTs All gave the same diag "Ireversable Bilateral Vestibulopathy" It has been to Co
4085 miles in 60 days. Now I'm 85 about deaf, NO Balance, Arthritis. God loves me
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1 ReactionWelcome @tomvan, I'm sorry to hear you have Irreversible Bilateral Vestibulopathy. I know it must be terribly difficult to manage. You will notice that we removed your phone number and your wife's phone number from your post to protect your personal privacy since Connect is a public forum and available to anyone with Internet. Members can exchange personal contact information using the private message feature of Connect. You can find out more about using private messages and other features of Connect by clicking the Help Center link at the top of any Connect page. Here's the direct link - https://connect.mayoclinic.org/help-center/.
The Vestibular.Org website has some information you might find helpful if you have not seen it already - https://vestibular.org/article/coping-support/.
It sounds like you have seen a lot of specialists with no suggestions. Did your doctor provide any suggestions for what might help you manage the condition?
@minfromtexas - Same here. Feb of 2020, went to Mayo in MN and diagnosis was identical to yours. I have both small and large fiber. Could not guess at cause but suggested perhaps some genetic testing. My wife and I talked it over and decided against it. Like you, I was active which has declined in last 4 years. I do remain as active as I can which is a challenge having poor balance. You are right, not knowing how we will be in a year from now does keep us going. I feel someday, the medical community will figure this out.
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