Will My Neuropathy Get Worse?

Posted May 25th, 2011 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

One issue neuropathy patient’s face is the fear that their neuropathy will grow progressively worse. Neurologists call this a progressive polyneuropathy. The truth: no one really knows if your neuropathy will worsen, stay the same or disappear. A neurologist shared that this may have more to do with the underlying cause of the neuropathy than any other issue.

 

I speak of this very fear in chapter twelve, Focus, in the DVD “Coping with Chronic Neuropathy”, and if you have not viewed this chapter, I suggest that you do so. The viewing will provide a better perspective.

 

Neuropathy patient fears are often increased by the coming and going (remitting and relapsing) of neuropathy symptoms. Too many doctors still fail to understand this reality for the neuropathy patient, yet these patterns are a medically confirmed fact. Better recognized are the same patterns for some forms of MS (Multiple Sclerosis)!

 

Neurologists confirm that there are acute neuropathies that come on suddenly and then the symptoms disappear. In other neuropathies symptoms occur, disappear and then return at the same level. Other neuropathies occur, disappear and then return at increased levels and in more places of the body. Others come, go and then go away for years only to return with a vengeance! The chronic neuropathies and polyneuropathies which increase for years are often referred to as progressive polyneuropathies. The mystery is increased as there seems to be no rhyme or reason for these patterns. The only thing I noticed is that when I increased activity, I have increased burning, pain or other symptoms and I would guess that this was due to making damaged nerves work.

 

For years between the emotional highs when my symptoms remitted (“Hurrah, they’re gone!”) and the emotional lows when they relapsed (“Oh no, they’re back!”), I was tempted to worry that my symptoms were going to worsen and guess what, they did! But one has to ask the question, did the energy spent on worry change anything? No! What I re-discovered was what I learned in Sunday school. It was better to spend my time and energy finding a doctor who was trained in the clinical approaches to neuropathy then to waste energy on worry. I needed a doctor, not worry, to focus on my symptoms, a doctor working with me as a partner, while treating the symptoms and looking for the cause. I needed a medical Sherlock Holmes, not time worrying about what might happen.

 

This approach maintained a focus on self empowerment by learning all I could, while prodding the doctors with questions that helped them think and act. The most important question for you is not, will my neuropathy get worse, but what is the underlying cause? Spend your energy looking for the cause, as no one knows if your neuropathy will worsen or not.

 

I know that for so many of you neuropathy has been a progressive illness which worsened over the years. Conversely, my progressive polyneuropathy has not killed me, for my neuropathy symptoms began at age 31 and I am now 72. Thirty-one years into the symptoms with a million denials with a diagnosis beyond crazy to idiopathic neuropathy, I was given one drug which drove me to talk backwards and then another that reduced pain by 80%. Five years later with the miracle of IVIg I am able to keep breathing and the chest muscle spasms stopped while reducing other mind numbing symptoms. This took many doctors, lots of research and knowledge, while asking good questions and giving doctors documents from experts. It may have been fear and anger which drove me forward, but it was these focused actions that brought help, not dwelling on my fears!

 

It is important to know which issue is important as you set goals for getting help. It is important to focus your energy on learning, getting help with symptoms and finding the cause and solutions for the diagnosed illness. I do not mean idiopathic neuropathy (of unknown cause). It is very difficult to find a solution, other than for symptoms, when the neuropathy is of unknown cause. Many times it is a matter of the doctor taking the time, helping the doctor think and pushing the system to do the testing that is now available.

 

Tests that are available will with good thinking and clinical training allow the doctor to know if the neuropathy is large or small fiber, motor, sensory or autonomic, axonal, immune-mediated, demyelinating or inflammatory and these clues can lead to a possible identification of the cause that is more helpful than idiopathic. Unfortunately many neuropathy patients are simply tossed into the pile of idiopathic and sent home.

 

 

RESOURCE: Read Dr. Scott Berman’s book, as this book may provide insight and is available at the website www.neuropathysupportnetwork.org RESOURCE TAB. Dr. Berman has untreatable CIDP (chronic inflammatory demyelinating polyneuropathy) and his book speaks to all neuropathy patients as one who has been in our shoes with many neuropathies. Dr. Berman empowers us to face creatively the emotional issues we ALL face in chronic illness.

 

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

 

NOTE: Copyright 2013 Network for Neuropathy Support, Inc.  This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author.


21 Responses

  1. Linda Vitiello says:

    Just wanted to thank you for this informative writing. I am preparing for my first neuro appt. for pn and am scared to death of what is happening so quickly in my body. Your message contains a wealth of information and I appreciate your sharing it.

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Linda: The fact that the information was helpful makes it all worthwhile.

  2. Ruth says:

    Thank you for this information. I suffer from chemo induced neuropathy for ovarian cancer. The surgeon hem and haws about it but has not helped me understand or deal with it. The only thing he has encouraged is exercise. It is nice to know there are other options out there.

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      RUTH. Glad it helped. Please order your free copy of the DVD if you have not done so and look at the FAQ tab as it has other information in it. By the way, the cover of the DVD and this website was designed by David Morroll a cancer patient who also had neuropathy and we became great friends in the infusion room! He is a great guy and lives now in NH. Oh, Dr. Latov’s book (see RESOURCE tab) has information on chemo induced neurpathy.

  3. Julie says:

    Thank you so very much for the information and assistance with leads to resources. I have quite a lot of research to do, it appears. Looking forward to DVD, though admit there is still this ‘fear’ angle as I have to continue work for several years and the unknown sits in my mind. Was told to stretch feet, walk on toes & heels to work nerves, etc. Oh my, so much to investigate! And will order books you referred to. You are like a ‘life line’ to me and I agree – spend time searching, not worrying. I will try. Thank you again.

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Julie My thoughts are with your as you seek the help you need and deserve. The advice to MAKE or FORCE damaged nerves to work will INCREASE the neuropathic pain. Proper exercise is important and you can find some guidance in the article on exercise in the NSN TODAY tab. If you have more quesitons, lset me know.

  4. i have peripheral neuropathy in both legs and feet from Agent Orange direct exposure on Guam where I handled, mixed and sprayed it for ten years during the Vietnam war. I also have anklylosing spondiolysis, sciatica, spinal stenosis and osteoarthritis with degenerative joint and disc disease. The pain has gotten worse especially the right foot and big toe. I have talked with other vets exposed with me and they have same symptoms. wearing socks is feels like the socks have rolled up under the feet and the big toes have excruciating shooting pain and buring pain. any ideas to help this condition ? many of us suffer these same diseases from AO direct exposure which mine was severe and prolonged.

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      MSGT FOSTER: I understand completely. If you have not ordered the free DVD at the ORDER DVD TAB please do so by sending your mailing address to gene@neuropathysupportnetwork.org. Would suggest that you look at the q/a at the FAQ tab to further understand your condition. Consider the topical creams listed for the burning pain in the feet and other suggestions. For the shooting pains both the anti-seizure and anti-depressant drugs are often used in combination to treat neuropathic pain which is pain caused by the damaged nerves. The one drug that helped give me 80% relief from these pains was called nortriptyline an older anti-depressant that is used for this type of pain. We are just now beginning to understand neuropathic pain for damaged nerves. The feeling of socks rolled up on the feet is very common with peripheral neuropathy. To further understand this disease caused by Agent Orange and hundreds of other causes, suggest you go to the RESOURCE tab and order two books (under $15 each) the one by Dr. Latov and the one by Mims Cushing which has ideas from patients as to things to try. Too few doctors have the clinical training for the diagnosis and treatment of peripheral neuropathy but we are working on it. Back 10 years ago these books and ideas were not even available and while denial of the relationship between ao and neuropathy continues within the VA and government we are making inroads into the denials. I only wish it could happen sooner, but it is an up hill fight. God bless.

  5. Sandra says:

    Interesting read. I’ve suffered from neuropathy pain since I was 17, and I’m now 38. I was diagnosed with small fiber neuropathy but also idiopathic, peripheral, and autonomic. The full gamut of doctors not knowing where of how to diagnose.
    Knowing other people are out there and have experienced this and are still experiencing this, does give some hope on days when the pain is at its worse. No one understands by looking at you at the pain your experiencing so it’s sad but good to know you’re not alone.

  6. Sue says:

    This is the most helpful information I have ever found on neuropathy. I have something called Lumbosacral radiculoplexus neuropathy caused by diabetes. It initially caused unbearable pain and I’ve been treated with morphine and dilaudid for 3 years. I just got myself off the dilaudid (which was hellish) and was planning to get off the morphine. My problem is I started to exercise–strength training and walking–again on Monday, and the next day the pain was horrible again. It helped me to see that you noted the same thing about exercise. Now I have to figure out if it’s better to keep taking the meds (and be dependent on them) so I can move my body and stay in shape or if I should stop taking them and just sit around all the time. Have you ever been able to exercise without the symptoms returning? Thank you

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Sue: I sent you a response via e mail. But for anyothers, for questions regarding physical therapy and exercise, go to the article on the website in the NSN TODAY tab and read. See this article: http://neuropathysupportnetwork.org/blog/2011/05/exercise-and-neuropathy/#more-106 The right kind of exercise or physical therapy can help neuropathy, BUT the wrong kind will increase the pain due to the damaged nerves. You are forcing damaged nerves to work…thus more pain. Write me directy via e mail at gene@neuropathysupportnetwork.org and tell me the type and location of the pain as there maybe something else that will help besides the opiates that often become a problem worse than the disease.

  7. bwas says:

    I’ve had idiopathic neuropathy for over a year, hopefully I find out the cause. Living with chronic pain can test your sanity, and its hard for the medical community to treat. I wouldn’t wish this never ending discomfort and variable pain on anyone. Good luck to my fellow sufferers, try to distract yourselves.

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Hi. You will find lots of information basic to understanding PN on the FAQ tab on this website. There may be some information there reqarding treatment for pain and symptoms. I know that the burning and tingling sensations are often successfully treated with topical creams. The one that many patients say works for them is called NeuragenPN available in many CVS and Walgreen stores over the counter. Also there is lots of information in the book by Dr. Norman Latov regard causes and some treatments…and the book by Mims Cushing has lots of information from patients…both available on http://www.amazon.com for under $15 each. Also if you will send me an e mail at gene@neuropathysupportnetwork.org we can send you the latest on diagnosis of PN that you could give to your Neuromuscular Neurologist in helping to find the cause of your neuropathy. Best to you…. Col Gene

  8. kenny sem says:

    was recently diagnosed with periphreal neoprathy, after 3 years of going to the va, telling me it was all in my head, went to private neurologist. after diagnosed,i asked how it came on so fast(overnight), lost balance,equilibrium,eye problems,etc., no real answers, am 76 yr old veteran not exposed to ao. I went from very active to almost inactive, still a mystery to me. thanx

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Kenny: Neuropathy is very unpredictable. The most important issues remain, do they know any cause and second what was diagnosed? Do not allow them to diagnose just an idiopathic neuropathy. I am not sure when the symptoms began as you mention 3 years going to the VA then I think you are saying the same PN symptoms then grew really worse almost over night. You may have a form of CIDP or Small Fiber Neuropathy if you are not diabetic, and there are some treatments to stop the damage. But you need to be seeing a board certified neuromuscular neurologist to have a shot at getting help. Please send an e mail to gene@neuropathysupportnetwork.org and perhaps I can offer some more insight that you can share with your doctor. The more information you provide on symptoms (please go to the NSN TODAY tab on the website and read the article on SYMPTOMS under PERIPHERAL NEUROPATHY), the more information and insight we can provide. Also send your mailing address and we will send the DVD “Coping with Chronic Neuropathy”. Read everything in the FAQ tab as it is basic to understanding neuropathy. But send me an e mail so I can give you more guidance from Doctors who know
      .

  9. kenny sem says:

    E-MAILED YOU ON THE 8TH, HAD MRI, EMG, EEG, SAID I HAD NERVE DAMAGE. WANTS SLEEP TEST, PUT ME ON PROZAC, DIDNT DO MUCH GOOD, CHANGED TO GABAPENTIN 100MG 3 NIGHTLY. MY MAIN PROBLEM IS MY BALANCE, DIZZINESS, GROGGY, FEEL LIKE I WANT TO SLEEP ALL THE TIME. VERY FRUSTRATING. THANX

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Kenny: I do not have your e mail…. make sure you send it to …. gene@neuropathysupportnetwork.org … so try again…. sorry about this… I am about one week behind in getting folks answers… but since you sent it on the 8th you would have received an answer by now. According to Dr. Latov you need the gabapentin and if this does not work then they need to add another type of drug such as nortriptyline..so make sure you speak to them until you find what works for you…. so if it stops working talk to the doctor… for burning pain they use a topical cream… see FAQ tab…. For balance, dizziness (common well documented symptom of PN) make sure you have a cane, walker etc… to keep from falling… when you feel tired (a common well document symptoms of PN) do not fight it… rest for about 1 hour or so even if you do not sleep… it will help a bit… groggy comes from lack of sleep and chronic neuropathic pain… read everything in the FAQ tab as it helps understand the basics of PN…. YES HAVE THE SLEEP STUDY…. a special machine at night will keep you breathing and help in getting more deep sleep… if I were to guess… talk to the doctor about CHRONIC INFLAMMATORY DEMEYLINATION POLYNEUROPATHY or a variant thereof…. as this must be treated and treatment with IVIg (immune globulin) is very effective…. see the website TAB NSN TODAY on the left column go to the subject Why IVIG as there are ten articles on the subject… If you send an e mail I can send you a document to justify a trial of IVIg in your case that you can give to the doctor… this document saved my life when I gave it to the doctor and they did it…. been getting IVIg since 2004…. If you have not ordered the DVD “Coping with Chronic Neuropathy” please send by e mail your mailing address… God bless

  10. Rebecca Panzica says:

    Hello,
    About 3 years ago I woke up with neuropathy. The neruroligist just did some painful nerve tests and said I was idopathic. He has retired and I never went back to see anyone else as I figured they did all they could. I am on 2400 mg of Gabapentin but I still have so much pain. Walking is something I have always done for excersise, however it is so painful when I get done it feels like my nerves are trying to jump out of my skin. Also I always have a feeling that my nerves are squeezing my muscles. I have constant burning in my shins and can no longer mover any toes. The nerve pain is now in my sides, face , arms, hands, and abdoman.
    Is this pretty much all I should expect from a neruologist? Just give me different meds to try? I come home from work and I am so exhausted I am asleep by 7pm. Then I spend the weekends in bed. I really have no life and see no reason to continue as my quality of life is rather poor. I hate to take the time off work and the money out of my pocket, to see a Dr who is gonna spend an hour shocking me with electricity then say well, nothing we can do.
    I am sure you would advise I seek another Dr but is there really going to be any benefit?
    Thx

    • LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS says:

      Rebecca: I do not know what tests were conducted by the neurologist who should have retired long time ago. I never suggest any patient accept a diagnosis of idiopathic. By doing a EMG and a Nerve Conduct study the condition of the large fibers of nerves can be determined and this can lead to a diagnosis of at least the type of PN and it may point to possible treatments. If these tests are not conclusive then you need to have a simple skin biopsy test that will determine if there is damage to the small fibers as SFN is treatable in most people. A spinal tap is also diagnostic for immune mediated neuropathies. As for medications, a doctor needs to work with you to find out what works for you as this is different for everyone..and sometimes one type of medication is better if combined with a second type of medication. Burning pain is treated with topical creams, but it is important that more work be done to determine what may be going on. Read everything in the FAQ tab as this is basic to understanding neuropathy. Please send an e mail to gene@neuropathysupportnetwork.org and order a copy of the DVD “Coping with Chronic Neuropathy” by giving us your mailing address. There are a number of books that would also provide lots of information, the one by Dr Latov AND Mims Cushing listed in the RESOURCE tab…under $15 each on amazon.com… But send an e mail as I then can give you more information. God bless.

  11. Roxanne says:

    Thank you

Leave a Reply

*

%d bloggers like this: