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Frustrated10 01-26-2010 09:48 PM

I am new - neuropathy symptoms undiagnosed
This month marks the fourth year of having neuropathy symptoms in my hands, arms and legs with no diagnosis. It started after coming home from vacationing in the British Virgin Islands. I developed a fine rash over my entire body. Weeks after that, I developed malaise, weakness, extreme fatigue. Went to MD (several times). Had pain on left side of my face, headaches on left side behind my left eye everyday. Had MRI to r/o MS. EMG normal. Developed numbness in left hand and left lower extremity. After multiple tests, I've been told "we may never find out what is wrong" and was given the recommendation of driving up to Mayo Clinic and "ask to be seen as an emergency case" (if you make an appointment it could take months to get in....if you show up as an emergency, they have to see you within 24 hours, so I've been told). I've been told I have a virus in the left side of my face, prescribed muliple medications. After all that, still no diagnosis. Now I only go to the doctor when I absolutely cannot tough out the pain any longer. S/S are: burning pain in bilateral lower extremities, mostly in the popliteal area. I cannot tolerate any tight clothing to touch my legs, behind my knees, thigh and groin area which exacerbates the burning pain. Feels like my lower legs were scrubbed with sand paper and a hot curling iron is being held to the backs of my knees. It gets progressively worse as the day goes on. I can't sit for long at my desk. My legs feel tight, as if they are edematous, but they aren't. Pedal pulses are good. Legs and feet do get mottled looking in dependent position. Left great toe is dusky most of the time. Arms ache and burn, joints in fingers are getting stiff and painful. Distal phalange left ring finger has developed a bump. My gums and teeth even hurt. My tongue and roof of my mouth burn as if I just drank scalding hot coffee. Fasciculations in lowers extremities. Blood work revealed a vitamin D deficiency at the end of August. I had spent every weekend of the entire summer doing yard work, so no lack of sunshine there! What caused the vitamin D deficiency? Hands are cold and ache when they are cold which goes right up my forearms. When they warm up, they get really red. I was given blood pressure RX and diagnosis of Raynauds for these complaints. I was put on Cymbalta for the neuropathy pain, but it isn't helping and now providers assume I'm on Cymbalta for a psych condition and is the path they always go down when I'm explaining my symptoms....until I push them enough that they actually find a physiological reason for a complaint. They actually look relieved when they find something they can put their finger on. Has anyone else had this type of situation? What did you do or what are you doing to find the answers? What specialty have you gone to? Thank you..

Ruby8 01-27-2010 11:49 AM

Re: I am new - neuropathy symptoms undiagnosed
I am so sorry to hear of your troubles. I had a few thoughts while reading your posting. First, I wondered what diseases might be endemic to the Virgin Islands that doctors here might have overlooked. What made me think of this is your initial rash, which in U.S. might indicate Lyme disease (that would require antibiotics). Worth checking out the possibilities for diseases you may have contracted there as they may be treatable. Your symptoms seem pretty typical of people with small fiber neuropathy (SFN), a type of neuropathy that doesn't show up on EMG tests. Check out the threads on this board related to SFN and google "small fiber neuropathy." This type of neuropathy is not very common so you will not find a lot of info on it, plus doctors tend to not be familiar with it. You said Cymbalta didn't help, but everyone with SFN responds differently to different meds, and another antidepressant with known benefits for SFN may work for you. Also, you didn't mention taking any anticonvulsant med, like Gabapentin/Neurotin of Lyrica. These meds are generally prescribed to treat neuropathic pain and they can work wonders. As to Vitamin D, there are many possible causes for Vitamin D deficiency other than lack of exposure to the sun. Also, recent studies have shown that increasing Vitamin D serum levels can help in reducing cancer, MS symptoms, etc. The University of California is one institution having reported these relationships. Keep on pushing with doctors and don't let them deter you with talk of your condition being a psychological condition. Good luck. - Ruby

Frustrated10 01-27-2010 08:46 PM

Re: I am new - neuropathy symptoms undiagnosed
Ruby, thank you for your thoughtful response. Looks like I have some research to do regarding SFN. Funny you mentioned Lyme's disease... I requested to be tested just a couple of months ago and it came back negative. Early on, the neuro prescribed Lyrica but I was completely snowed. I can't remember how long I tried to take it, but it was improbable I would have remained employed very long while on it so I stopped taking it. Perhaps I didn't give myself enough time to acclimate, but I was pretty much useless at work which wasn't acceptable to me. Well, I better get to that research. Thanks again for the encouragement and insight.

jjm0019 02-08-2010 04:51 PM

Re: I am new - neuropathy symptoms undiagnosed

Has your neurologist conducted a "punch biopsy" on your leg to test for Small Fiber Neuropathy yet? If not I would have that done right away. The punch biopsy is really the only way to properly diagnosis SFN. I've been suffering with the disease since I was 18 years old. I'm 32 now. It's been a tough road to say the least. I wasn't diagnosis until I was 31. All the years prior my doctors told me the pain was in my head. They suggested cognitive therapy for "childhood trauma" even though I had two great parents and a terrific upbringing. My favorite one was when doctors would call me a drug addict because I would ask for meds to treat my pain. As Ruby stated, quickly deter your doctors from trying diagnosis your pain as a psychological condition. It's bogus and very unprofessional for doctors to assume your pain is psychological just because they can't fine a physical symptom. To answer your questions, I did go through a similar experience of not being diagnosed. All I can say is keep seeing different doctors and don't be afraid to tell them what you want and expect from them. Demand their time and make sure they hear your story before you leave their office. I suggest writing a letter stating your symptoms, history, date of onset, etc. Have the doctor read the letter before you see them so there is a good understanding of why they are seeing you. In my experience, if you throw too many symptoms at a doctor at one time, they usually start tuning you out at around number 2. So get it all on paper, that helped me. You also need to start treating your pain and give the meds time to work. Neuropathy is a painful disease that impacts people differently. Unfortunately taking a number of meds may be your only potential for relief. I take a few different medications that help a lot with my pain. Find a doctor that will treat your pain symptoms while you're trying to find a cause. There is no reason you should have to suffer from day to day. I'm taking the following:

20 MG Oxycotin 3 X a day
3-4 Norco 10/325 MG 3 x a day
Gabapentin 300 MG 3 x a day

I realize this may seem like a lot. But it let's me live my life in significantly less pain. The alternative is that I suffer. As long as you take everything as prescribed, you'll be ok. There was not an underlying reason for my SFN. It was categorized as "idiopathic." While the medicine seems like a lot I'm stuck knowing there is no reason or cure for my disease, and therefore, I do take some comfort in knowing the medicine does help me along my way.

Frustrated10 02-10-2010 08:21 AM

Re: I am new - neuropathy symptoms undiagnosed
Wow, you are telling my story!! Both you and Ruby have given me much great information I actually feel hopeful I'll be able to find someone who will help me. Just two weeks ago, I went the emergency room with c/o dizziness, ataxia, involuntary
muscle jerking and facsiculation. The ER doc took one look at the meds I was taking and immediately jumped to the conclusion I was having a psych issue. He asked if I was under a lot of stress because stress could cause these symptoms. Of course that wasn't the issue. I was having a durg interaction between Cipro for a UTI and Cybalta for the neuropathy pain. needless to say, he came back to tell me I had a physiological explanation not a psychological one. You think?? My favorite one was a recommendation to be checked for Syphilis. I'm disillusioned with medical community especially since I'm a nurse and have worked as a colleage with these docs through the years. Again, thank you for your support and telling me what treatment provides you with some relief. I will keep plugging away until I can report that I found a professional willing to take on my case. I'm going write that letter you suggested cause you were right on the mark about the docs eyes glazing over while I telling my story! That was pretty funny!!!!!

jjm0019 02-11-2010 01:19 PM

Re: I am new - neuropathy symptoms undiagnosed
Yeah, that experience from your ER visits sounds about right. It basically encompasses the heath care community. Most doctors don't give a rat *** about their patients. I really believe that. So many are quick to categorize it as psychological which used to frustrate the crud out of me. I can empathize with you in so many ways. I went through the same nonsense and if it wasn't for the Pain Management Clinic in San Diego I'd still be dealing with the incompetence of doctors. I finally got to a point where I wasn't going to let them rush me out of their office and categorize my pain as psychological. It's BS plain and simple. As far as the letter goes, it a great idea to get that done. My advise is hand deliver it to the doctors office a couple days before your appointment with instructions to "read it" before the date of your visit. If you get there and the doctor hasn't read it, just walk out. I did that three times. Of the three I only had one doctor call me back and apologize for not reading the letter and understanding how important it was to me. They NEED TO KNOW YOUR STORY before they can even begin to treat you. I'm not sure what area you live in but another suggestion would be to look up the Pain Management facilities in your area. They deal with pain all the time and can relate better than these "specialists" or your GP. They are also more willing to treat your pain without necessarily having a diagnosis. The Pain Mgmt facility I'm going to is great and they fully understand that pain can be prevalent without a specific diagnosis. Try the pain meds. I realize they are taboo for a lot of people, but they work medicals for me. Question for you? Does your pain increase/decrease with changes in the weather? Mine does. It tends to get worse during the winter (which living in San Diego there isn't much of one but my pain still get's worse when it's colder) and better in the summer. It doesn't go away but it feels a little better. Just curious....

daisymaegrl 02-11-2010 05:18 PM

Re: I am new - neuropathy symptoms undiagnosed
Hey frustrated,
Just jumping in to say I agree with jjm and ruby8!
I wrote a letter to my neurologist and had him read it before I went in to my appointment. I did not feel I have a very good relationship with him. I am sure he is a very good doctor but we had a cultural difference and a bit of a language barrier.
I needed to make him understand clearly that I needed some real help, not just prescription after prescription of pills to try. He needed to know how the neuropathy affected my life. So with the help of jjm and aussie and others on these boards, I wrote the letter.
He was very pleased that I had written it as it gave him a better understanding. He agreed that perhaps he was out of his depth and put me in touch with another neurologist who is known as an expert in SFN.
I can certainly appreciate your frustration with the medical community. I find that things move at a glacial rate. But you need to get on this quickly as I think the longer you have the neurological symptoms the more ingrained they will be. Not a medical opinion, just mine.
I do wish all of the best and hope you find answers!!!
Best wishes,Daisy

Frustrated10 02-14-2010 08:31 PM

Re: I am new - neuropathy symptoms undiagnosed
Daisy and jjm - Again, your input is truly appreciated. Yes, the symptoms are worse with cold weather, cold office environments, etc. I can't seem to regulate my body temperature. Either my hands and feet are cold, painful and blue or it's hot flash time with the sweats and redness. Since it's winter in Chicagoland, it's more cold and blue than overheated and red. In the summer, I can overheat where my face becomes beet red (hmmmmm, something else to add to my letter). This has been going on maybe a couple of years now. Just plain this yet another symptom of SFN?? No punch biopsies have been mentioned to date. From what I've read so farr tt appears this is a rather new development in diagnosing SFN. Another question, how did you manage to work throughout your ordeal? I've missed less than a 5 days of work over the last 4 years, but as the symptoms intensify, the will power to sit and concentrate for 10 hours each day is becoming a struggle. Distraction doesn't work any longer. This is forefront on my mind. Daisy, you mentioned this needs to be addressed before it becomes ingrained. That hit home. I typically don't act on aches and pains thinking that this too shall pass. Well, it isn't passing. Tomorrow is Monday and I will need to take the next step in making an appointment with a neuro. I did go to one when all this started 4 years ago, so at least I am established as a patient. Wish me luck. I'm taking your suggestions and support with me. Thank you!!

jjm0019 02-16-2010 07:28 PM

Re: I am new - neuropathy symptoms undiagnosed
Frustrated, The symptoms with cold and hot weather do seem to be consistent with people who have SFN. I get hot flashes something fierce throughout my body. In fact, my ears are burning and beat read as I type this email. I have people comment on it sometimes and I just tell them, "I got a lot of sun." The symptom comes and go and to answer your question, yes, I think it is a result of the SFN. Good times!

The punch biopsy is actually a very new development. I think it was discovered roughly 5 years ago. At least that's what my neurologist told me. He also expressed they make new break through in their field of medicine all the time so it's important for patients to meet with their neurologist at least once a year. You never know how new medicine could help us. Stem-cell research is the key in my opinion. If they can figure out a way to regrow and/or repair the small fiber nerves through stem cell research, there may be a potential cure out there for people like us! Fingers crossed...

Regarding work, that is a great question. Before I was diagnosed with SFN I couldn't find a doctor to treat my symptoms. I suffered with the pain day in and day out. I too found it extremely hard to concentrate for long periods of time. I don't know about you, but sitting behind a desk for an extended period of time just drove my symptoms crazy. The burning, pins and needles, back pain, etc. was just agonizing. As you stated, the pain was at the forefront of my mind and I could not shake it, EVER! I was depressed because of my pain, and when you mix that with all the other symptoms, it made it close to impossible to focus at work. I can empathize with you so much on this subject. I'm a people manager and I just can't express enough how hard it was for me, so I know exactly where you're coming from. I had been dealing with the pain for years. The onset of the symptoms started when I was 18 and it took until I was 31 to finally get diagnosed. At around age 27 I started to self-medicate to get through the day, because I couldn't find a doctor to prescribe me medicine without a diagnosis. I would take any type of pain med I could get my hands on. I know this was the complete wrong thing to do, but I was desperate for relief so I did what I felt was necessary to reduce the pain and keep my sanity.

Ever since I was officially diagnosis with SFN I have found a wonderful team of doctors that treat my symptoms by using a few different medications. The med's help me work and live my life in less pain. Not pain free, but in less pain, which I'm satisfied with. If I didn't have the meds, I would be miserable. I've come to rely on them, which I'm ok with because there is no underlying cause or cure for my disease. I'm able to be productive at work. But more importantly I'm able to be a good husband, friend, son, and person because of the pain relief the meds give me.

The problem with SFN is there isn't any noticeable symptoms just by looking at a person who has the disease. As a result people look at us and say, "Well you don't look like you're in pain. You don't look like you have a disease. You look ok to me." But inside your body is painting a completely different picture. My heart goes out to all the people who have this disease, who suffer from chronic pain, who have no support, and who are just looking for answers and relief from this ****** disease. There is a great book I just finished reading that focus' on the subject of chronic pain and a person's appearance. I read the book and saw SO MUCH of myself and other people I've spoken with about this disease. I strongly encourage Frustrated and anyone else to please read this book. It's called Just Fine: Unmasking Concealed Chronic Illness And Pain by Carol Sveilich. This should be required reading for any doctor/person who treats or had chronic pain.

Frustrated: Couple questions for you? 1) Are you treating your pain with any type of meds right now? Are you open to taking pain meds? If you are, they really help once your body get's used to them. For me, they are the only thing that has helped relive my pain. 3) Are there any Pain Management Doctors/Practices in your area? In my search for help, I found "pain management" doctors are more apt to helping people with chronic pain, and treating symptoms without a diagnosis. I feel for and empathize with you so much. If you're interested in seeing the letter I wrote or you just have more questions regarding what I've been through with SFN please let me know. I'm happy to share any information and help anyone I can with my story. As you can tell from how much I write I'm very passionate about this subject. I suffered for so long without help or medicine from doctors, and I just don't want to see that happen to other people. You can ask away on the public forum or send me a private message. Whatever works for you!



Jusbcuz 02-22-2010 07:01 PM

Re: I am new - neuropathy symptoms undiagnosed
You need to find a doctor who will speak honestly with you about neuropathy. After more than 10 years of pain, I found that much of it was due to neuropathy. I was shocked!

whatnow4years 02-27-2010 07:43 PM

Re: I am new - neuropathy symptoms undiagnosed
It seems like neuropathy symptoms might be difficult to diagnose. My son has had pins and needles and muscle weakness for years and we have seen every doctor imaginable, but we still have no diagnosis. His EMG turned out slightly abnormal after he exercised the muscle, but MRI was clean. A few months ago he had the involuntary muscle spasms while at rest. His doctor had him have an EEG, but still....nothing. All that we know is that he has pins and needles, he has large muscle weakness mostly in hip flexers, legs and chest. He has diminished feeling to ***** and heat in his lower legs and arms. His hands are numb. He is ten and we have been searching for answers since he was 4. It doesn't seem to me that there are always answers. We don't want to hear that no one knows what could be wrong, but most of the time we just pray that it doesn't get any worse. I understand your frustration. We don't really want to turn to medications when medications may (or may not) be what caused this in the first place. (if we'll ever know exactly what this is!) Hang in there, write everything down because it is important to have a chronological list. I hope that you find some answers. Every year there is more research on neuro problems...hopefully one day you will get a diagnosis. (and we might too!(:)

Jusbcuz 03-01-2010 06:08 AM

Re: I am new - neuropathy symptoms undiagnosed
After nine surgeries and ten years of pain, I found out I had neuropathy. When I was reading the handout before the dr came in, I almost got up and left - I don't have neuropathy! He came in and started IMS on me. There were areas where the pain was almost intolerable and he advised me he was barely touching the surface of my skin - I couldn't believe it. I do have neuropathy (as well as some medical conditions). After 10 minutes of IMS, I was 100% pain free - I couldn't believe it! Due to my chronic condition, I have to go in for treatments, but I now know what I'm dealing with.

robertnk 02-22-2011 07:11 PM

Re: I am new - neuropathy symptoms undiagnosed
For 20 months, I have had neuropathy in my feet and extreme fatigue. According to all doctors, I am in good health and there are at a loss to where I should go next. At first, I thought I had Lyme disease, but I test negative. I am on the waiting list to go to the Mayo Clinic. Meanwhile, I am changing my shampoo and soap to less harmful ingredients since some can cause nerve damage.

BiancaSing 03-08-2011 03:20 AM

Re: I am new - neuropathy symptoms undiagnosed

Not sure if this will be of any help and it might steer a bit away from SFN, but just to let you know that I have encountered the exact same symptoms you have after a short trip to Thailand (well, tropics after all). It started off with malaise, weakness, fatigue, etc, followed by numbness in left leg, left hand, pain to the left side of my face (when I touched my face it felt like burning and slightly swollen, although you could not see a thing) and pain behind my left eye. It was quite excruciating. Went to doctor and run blood tests and also demanded a test for tick bite diseases. He ran rickettsia, which was positive. A bit later, symptoms worsened and I demanded a lyme test. Came back negative in western blood. CSF test came back negative as well, MRI, EMG, Nerve conduction, CBC, etc, etc, normal. Nevertheless, as a precautionary measure, given the symptoms, I was put on a trial of iv Ceftriaxone and oral Doxycycline and so far, it worked like a charm for me. I am 2.5 weeks in and most of my symptoms have disappeared. Some numb headache is still left, but I hope it will subside soon. Doctors have run some infectious disease panels and still cannot come up with an explanation of what might have caused it. For me, I will repeat the Lyme test with Igenex and another lad in Germany, just to be sure, but call it what you want, the antibiotics have helped a big deal, so in my case, I suspect it is bacterial and not viral, as otherwise there would not be a response to antibiotics. Will have to see how it goes once I am off the meds.
Did you also get antibiotics from the MayoClinic among the medicine they gave you?

Mandymia 03-08-2011 04:19 AM

Re: I am new - neuropathy symptoms undiagnosed
Hello, I have read your story and was quite interested to find out some answers for my mother as well. I believe that mum has peripheral neuropathy. Her symptoms are burning and numbness in her lower extremeties and can not sleep very well at night as she keeps putting cold compresses on her legs at night together with oxycodone, gabapentin and amytriptelene and still, the burning and numbness in her legs disrupts her sleep. Her spinal surgeon ensures her that the burning and numbness in her legs aren't related to her spine but suspected maybe a vitamin b deficiency or sugar diabeties but tested negative on both tests. Mum believes maybe the bone grafting the surgeon done around L2-L5 is slowing building up or it's the affect of radiculopathy at the levels of L2-L5 and S1. Do you think this might be the case as everything else has been ruled out. Overall health is perfect. She has problems walking due to peripheral neuropathy. Unable to straighten back up. CT scans show no signs of scoliosis however still can't straighten her back. I am a loss trying to look for some answers for mum and in order to get better. I can't sleep well at night because she is suffering the burns in her legs and numbness. Can anyone help me solve this medical issue?

Thanks for reading, Mandy from Australia

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