1. Community
  2. Brain and nerves
  3. Spinal Problems

Mixed diagnosis -cervical disc herniation or neuropathy problems

Posted , 15 users are following.

heather60265
heather60265

Hello. I'm 43 yrs old with 2 young children. I have been struggling with progressive symptoms for few months & no solid answers. I have had progressive numbness, weird sensations, discomfort in feet, hands, arms. Random limbs back & forth. Recently, developed deep ache in wrists, hands, lower arms. Neurologist did full brain & Cervical MRI to rule out MS etc. in January Came back with 'c5c6 disc bulge/herniation with tear abutting the sac causing mild central canal stenosis'. Also small protrusion c4c5. Neurologist waving back & forth on symptoms being from disc because I don't have solid 'neck pain' (just stiffness/ache). She first told me it was all from disc, may need neurosurgeon-now she says my symptoms don't match?? She said looking at slides closer my disc is not pinching spinal cord or anything so she completely brushed it off. She is concerned of neuropathy, fibromyalgia etc?? I have EMG scheduled next week. In last 6 days I have been stuck in home. Can not function well, clumsy hands, weak arms, upper legs. Radiating ache, tingling in shoulders, upper back/neck & at times my body feels like in shock. Radiating vibration feeling or what may be nerve pain wraps around to my abdominal area, upper back/neck, shoulders, upper & lower arms, hands. I'm shaking, quivering inside constantly. Some spasms. I am afraid to drive my children to/from preschool as I feel uncoordinated, foggy headed from it all. I am clumsy in typing this all now as hands are clumsy/numb

Anyone have symptoms like these from disc herniation? Neurologist was never clear on nerve roots being impacted/irritated.

Grateful for any response.

Thank you

1 like, 27 replies

27 Replies

Next
  • Sally4Edgar
    Sally4Edgar heather60265

    Posted

    Goodness me!  Your symptoms sound remarkably like mine and I'm chasing a diagnosis myself. I was really interested to read your post with so many similarities. I've got a lower back problem which has been there since my late teens (I'm now 58) - a spondylolisthesis on L5 which has from time to time caused me a lot of pain but has been relatively stable for quite a few years now. Back at the end of August last year I fell and badly broke my wrist which had to be pinned and plated. The night after surgery I had weird hot and tingly hands and feet which I couldn't understand. I wondered whether my body was reacting to the metal plate and causing these odd sensations. A few weeks went by and I suddenly developed really bad lower back pain, but different to the familiar ache my spondylo would give me. It was like a hypersensistivity -  sitting was very uncomfortable and if I lay on one of those buttons in the mattress it would start up really badly. I went to the osteopath every week to try to get some relief and saw my GP. I thought that my fall might have caused my spondylo to worsen. My legs sometimes felt weak and then I started to get more strange neurological skin sensations which move around all over my body. I feally felt that I might have a serious condition in its infancy and wanted my GP to run some tests, but she flatly refused saying an MRI woudn't show anything even though I have a knownback condition that was x-rayed years ago, and said it was all caused by stress. Through frustration I saw a different GP and asked her to refer me to a neurologist privately.

    I went through my symptoms with him and he sent me initially for a cervical spine MRI. It came back with a subtle change in an area of the spinal cord but he didn't know what this was - said it could be trauma. The next step was a brain and rest of the spine MRI which thankfully didn't show anything associated with my symptoms. Next thing was 3 blood tests - my GP reluctantly did these, and on Friday this week I'm having Somatosensory Evoked Potentials tests - I think this is to test that the signals from the brain to the nerves aren't getting held up or distorted by something unseen on an MRI.  I was really worried my symptoms pointed to MS, but so far that hasn't been mentioned and the neurologist doesn't think its a demylinating condition so is looking for other causes. I asked him if it could be skeletal but he said there's nothing pressing on the spinal cord in any other area of my spine seen on the MRI.

    As for my symptoms, I have the same vibrating feeling that you describe, mostly I notice it at night when I'm lying still in bed. I get areas all around my body when the skin feels like someone has rubbed Vic Vapour rub on them - sort of stinging mentholated sensation. I can feel this pretty much anywhere, arms, scalp, legs back etc. and the sensations can change place. Last night my whole body felt like this and I couldn't sleep!, My mouth often feels like I've just cleaned my teeth - that menthol sensation again, which can seem to go down into my oesophagus and stomach. Neck stiffness and some pain on movement (and often cracking sounds when I turn my head)  like yours on one side and that side of my face is often warm and slightly pink,  At night I've woken up with numb areas of my body - a big toe this morning, an area below my knee the other night, my right arm feels peculiar ... I could go on. The numbness has disappeared if I move position but I've never had this problem before now.

    Just have to wait to see what these latest tests are going to show up. I'm hoping the neurologist won't need me to have a lumbar puncture because I would dread that with my existing back issues! I find it all very scary and you obviously do too. I'll keep you posted with my test results. 

     

    • lindagkelly
      lindagkelly Sally4Edgar

      Posted

      Hi Sally,

      I just read your response. Wow, so so sorry you are going through all this It's just not fair.. I had a lumbar puncture - you can ask for twilight anaesthesia. I did not have twilight anaethesia, but he did a local do a local before he did it.  It was not bad, really. I'm just answering that part because it sounds like you are scared.  Good luck to you.

      Linda

    • claire33440
      claire33440 Sally4Edgar

      Posted

      Hi Sally, 

      Your symptoms are so similar to mine. Did you find out what it is? I'm convinced it's something to do with my spine. Mine also began after a fall, and have gradually grown worse. I can't stand when the doctors say it's from anxiety. This is a completely physical thing. Moving my body into different positions causes stronger tingles in different areas. I have the tingles all over my body, although not all at the same time. As I type I have strong lines of tingles on the left of my face and chin, on on my lower back, and my left leg. I've had MRI of upper back and neck and showed no nerve impingement. I wondering now if it's my lower back. I've wondered that for awhile but more than one doctor says if I have tingles in head and upper back, then it can't be my lower back that is the problem! It's so confusing because I know I do have a problem. The reason they have looked up upper spine is because my neck is stiff and although I can move it, I rarely do move it to the right as that causes very bad tingles and pain. I can't look up much either. But I have tingles and numbness in legs too. I've 36 and have had these symptoms for 4 or 5 years. 

      Plaza let me know if you found out what it is...hopefully was. 

      Thank you  . Claire

  • christine22151
    christine22151 heather60265

    Posted

    Really feel for you I was 18 months with fatigue numbness in the hands no balance till a MRI scan and it was my top 2 discs herniated so had a op 1 year ago not as bad as i was the pain and fatigue have gone and i walk slow ........find the best sugeon you can if you have this ...op acdf it's called I'm in uk ..
    • heather60265
      heather60265 christine22151

      Posted

      Thank you for reply. I will see more specialist for 2nd & 3rd opinion before getting surgery. Neurologist made it sound as if no nerves impacted. She didn't say either way really. I would like to explore this further. Some nerves MUST be impacted after slides & report I reviewed
    • lindagkelly
      lindagkelly heather60265

      Posted

      You might ask about the Nevro Sensa HF10 neurostimulator as an alternative to surgery. It's a wire they implant in your body that sends out high frequency waves that disturbe the pain signals in your body.  I don't know if it would work fo ryou, but it's worth asking about.  Also, be sure you do all of your researcch on this before you decide to get it.  I'm putting it off for at least a year because I hear they have problems with the battery.  It's a hard decision.

      Linda

  • marie52818
    marie52818 heather60265

    Posted

    Hi

    I am due the same operation that Christine mentioned. In fact I think she was kind enough to respond to my thread asking for reassurance.

    My MRI showed degenerative discs and stenosis no spinal cord impingment but narrowing of foramen and trapping of nerve. Symptoms dull ache which is chronic in neck across front of shoulder down inside of arm under bicep then over forearm into thumb and index and middle finger.

    Referred to a spinal surgeon who was going to do a ACDF sept last year but I postponed to see if I could manage it conservatively. I have now reached the end of that road as my quality of life is deteriorating. Seeing him again in 2 weeks and then hopefully the op.

    Can you ask your GP to refer to you to a spinal surgeon for their opinion as your MRI suggests nerve trap meet surely

    • heather60265
      heather60265 marie52818

      Posted

      Thank you for your reply. I am sorry you have had such a struggle.

      I firmly had my GP refer me to a spine specialist. I go in few weeks. Have not had thoracic spine MRI. Just cervical & lower spine. I am scared for my EMG nerve test. Fearful how much nerve damage. I've never had an injury. Healthy in all other aspects. I was active in the gym and with my children up until 3 months ago when these drastic symptoms began. Originally my numbness started in toes few years ago. then last summer I would wake at night with limbs asleep so badly. Saw a cardiologist for heart health. Began neurologist as well. I had 3 months of very little symptoms then in December 2015 came back with a vengeance. I have newer sensations and more pain (nerve pain is what im gathering i feel), oddly less numbness in toes now. More my hands, wrists, arms pain/ache all over. It is spreading more & more my upper body. I do not trust medical specialists through the inconsistent, laid back attitude, responses I've encountered. I get thrown around a lot. Told its in my head. Take anti-depressants?! First I'm told by neurologist I have a bad disc herniation which is main source. Says she will set me up with great team & neurosurgeon. 10 days later in next visit with her she can barely remember anything of our phone conversation, asks me to fill in her memory of phone conversation of disc herniation?! Next she then looks at slides closer while I witness & switches course when I tell her of new increasing symptoms/aches in arms. I appreciate her doing more testing for neuropathy and/or lupus etc but she barely looked at my cervical slides that closely. Brushed them off so easily compared to her original diagnosis herniated disc. Makes no sense. Hence, I am going to spine dr for 2nd opinion.

      She really indicated I had no nerves impinged, that disc bulge wasn't too bad. I saw it! It was making indent into spinal canal-there was a curve How can that not impact or irritate some nerves somewhere?! Now she has me scared I have a serious nerve disease. I am sad, depressed and worried my children won't have healthy mommy.

      Appreciate reading this forum for insight and info. I feel for everyone experiencing these awful symptoms and conditions

  • lindagkelly
    lindagkelly heather60265

    Posted

    Dear Heather,

    Oh my gosh, bless your heart. First of all, everything on your MRI report is serious and all of your symptoms are serious.  Yet the doctors just brush you off! I have been through that as well.  Makes me so mad!

    First of all, you are going to be in this for a while. Get yourself organized and it will help you down the road like you don't know.  Start a folder and get a copy of every single MRI report, EMG report, x-ray report, etc.  Get an actual copy of the disc with the actual MRI imaging on it if you can. Collect and organize all copies of medical reports because I promise you, you will need them later. If you go in the hospital, get a copy of all of the hospital records for your file. You might need it in the future to bring to a new doctor, and you'd be amazed how much easier it makes everyone's life if you have the copies for them. You might need it - I hope not, but you might need it later for a short term or long term disability claim. (I am talking from experience)

    Second, you are going to a neurosurgeon. That means you are going to have surgery because you are going to a surgeon - and your neurologist referred you. If you do have the surgery, make sure the surgeon sits down and tell you all of the possible bad things that can happen; and how likely that is.  I had a surgery where they did a lateral surgery on the left side of my back and put in a cage - they did not tell me what a  high rate of people end up with permanent nerve pain in their leg, or I might not have done it. 

    3. If you don't like your neurologist, can you find another one.  Or google the name of the neurologist you are going to and see what other people are saying about him/her.  I went to a surgeon I didn't like, and I googled him, and he had 9 out 10 bad reviews.

    4. This is a hard one. If there are times you don't think you should be driiving your kids to preschool, then you are probably right.  What if you had an accident? Or got pulled over and given a field sobriety test? The police aren't sympathetic that you are not feeling well.  I'm so so sorry that this happens some times.  I had to quit driving because I have so much neuropathy in my foot.  You would be surprised that there are services out there - one is called Dial A Ride.  It has programs all over the United States. try googling it to see if there is one in your area.  It would be through your bus system. We also have a thing called Ride Choice through the bus system where I can take a cab raide and it costs me 25 cents to the dollar for cab fare. I'm just sorry you are going through this. 

    Bless your heart, push for your healthcare. It's amazing how many doctors just drop the ball. You have to take charge, and get copies of everything!

    Linda

    • heather60265
      heather60265 lindagkelly

      Posted

      Thank you so kindly for all of your helpful suggestions. So very nice of you to take the time. I miss being the active mom I usually am with my girls. Breaks my heart i had to miss a field trip with them today as i just couldn't move around or function well. They are so magical & important to me every day & my health stuff has interfered. I dislike medications. I refuse to take the high doses of gabapentin neurologists prescribed me. I take 100 mg at bedtime and 100 mg during day. I am SUPPOSED to take 300 mg 3x day! I am too afraid at side affects. I'm trying to brace myself for all of this. Your reply has helped more than you know. Thank you
    • marie52818
      marie52818 heather60265

      Posted

      I too am on gabapentin. I have managed to keep the dose down to 300mg three times a day as I am sure I couldn't function on more. They have said I can have 300mg three times a day!!! I just feel at some point I have to get off this and would rather come off a lower dose.
    • lindagkelly
      lindagkelly heather60265

      Posted

      Hi Heather,

      I'm so sorry that your pain keeps you from enjoying your children.  I'm so lucky that my injury happened when I was older. I can relate though, I was in Colorado for Christmas visiting my daughter and grandchildren.  My pain was so much worse because I tried to babysit my granddaughter for 4 days and by Christmas I was totally shot and only spent a couple of hours with my grandchildren and then I had to go to bed and I actually flew home 2 days early.  I love my grandchildren dearly, and I want to know them, but I am not able to do anything with them. I used to be very active too. As for the Gabapentin.  My doctors slowly increased what I take. I take a lot more than you do. I take 2 800 mg in the morning and 3 at night. It does not make me sleepy and I dont' have any of the side effects that are mentioned. Maybe those side effects affect people who have convulstions. I do take a medication that makes me very sleepy - thats tizanidine. But I don't mind taking naps during the day, because I'm home alone duront the day most of the time. The problem is that I can't sleep at night. Or at least, I don't want to. But the gabapentin is pretty safe. Try increasing it slowly. The level you are taking is probably not doing any good.  You might not need to go as high as I do because mine is for neuopathy.

      WAIT! I just rei-read your first letter above.  The doctors are saying your back condition was brought on by stress! They have NOT done any MRI's? THOSE blankety blanks!  Your "condition" sounds terrible for anyone to live with. Anyway, I found a great article for you, but we're not allowed to refer to websites so I'm sending you a private message.

    • lindagkelly
      lindagkelly marie52818

      Posted

      Have you tried Lyrica? It is also used to treat nerve pain. However, the side effects say that dizziness and drowsiness "MAY" occur.  But not necessarily.  I would say it's different with different people. Just like gabapentin. Good luck to you Marie!
    • lindagkelly
      lindagkelly heather60265

      Posted

      Hi Heather,

      I've been reading that taking antidepressants like amitriptyline or norpramine helps with pain! Especially when combined with pain killers.  I'm going to ask my doctor about it as soon as possible!

  • shelbyrae
    shelbyrae heather60265

    Posted

    Heather I am going through a very similar situation as you are right now... Here is my original post:

    I was an otherwise healthy 35 yo when in late December I started to experience numbness (anasthesia) feeling in my torso that spread to my neck and face with tingling pins/needles feelings. By January it was roving all over my body....sometimes my feet, sometimes legs, arms, hands....sometimes whole body....Very scary and sent me to the emergency room...CT was clean and was referred to neurologist....brain mri and eeg were normal (although he did say there was some slowing on left side-weird) and cervical spine turned up a bulging disc at C3 C4 that is focally deforming my spinal cord and causing spinal stenosis. The neurologist diagnosed me with cervical spinal stenosis and spondylosis w/ mylopethy and I was sent to neurosurgeon who recommended spinal fusion surgery. During this time my numbness was more constant especially in my legs, eyes were constantly dry, neck stiffness & pain, sensitivity to sound & light, bad headaches in back of head, feet and hands sensitive to cold water & air.... At the urging of family and friends we went & had 2nd & 3rd opinions from another neurologist & neurosurgeon who both believe I was misdiagnosed & the spinal chord compression would never cause generalized numbness througout body & other symptoms I was having. Having more tests & seeing a 3rd neuro thursday to see what he says...Just wondering if anyone has ever had body numbness in large parts of body & what the diagnosis was-could it be from bulging disc???....I would so appreciate any advice or experiences as this is wearing on me mentally and am very confused & scared.

    ​Heather, I think the hardest part is not knowing what is going on in our bodies and not knowing who to trust! Please keep us updated... I am awaiting results from my emg that i'll get on wednesday... good luck and know that there are others out there going through the same thing & we will figure it all out...it's just gonna take time and patience

    • heather60265
      heather60265 shelbyrae

      Posted

      Shelby,

      Since this post, I went to ER (again) & was admitted overnight. My symptoms increasing & spreading as you mentioned. This time happened while driving & I almost 'blacked out', left face numbness etc. Super scarey. It was the first time I had attempted driving in a month & it is clear I can not. Symptoms too unpredictable & random. I can't get a break for even one day sad

      Hospital was concerned of possible stroke. They did CT scan, EKG, chest X-ray bloodwork urine. All normal. Kept me overnight for observation in the neuro unit. Many docs & on shift neurologist there all agreed these symptoms had little to do with my cervical & thoracic discs. They also agreed it is time for me to see a rheumatologist. I should get into one within 2 weeks I hope. Also they mentioned psychiatry?! That this could be some how stress related. I know stress ruins health but ALL of these symptoms?!. I've had normal EMG, several brain MRI's, spine MRI's, EEG's, you name it. Blood test for lupus, rheumatoid arthritis came back negative. Tested for some deficiencies-none.

      24 hrs after returning home from hospital I had episode of intense burning pain that wrapped around my middle body (chest, abdominal, back) plus arms & of course achey cramps upper legs. It was so bad I actually thought of pain killers for first time. I dread drugs. I don't even drink alcohol so it's pretty bad if I'm in that much pain to start going there in my head. 30 min later this pain sensation calmed down, then it jumped up to my head. Ugh! It's so random

      I can't get a break for even one day. The pressure sensation I'm feeling more & more is also scarey.

      I asked hospital neurologist about Guillan Barre syndrome but he said he didn't think so. That it would of showed up on my MRI. I was even willing to do the spinal tap test for it. He said no.

      I'm really nervous. Afraid of a serious syndrome or disease. Trying to keep the faith. It's difficult with your family on your heart & kids that need you back to normal. I've been reading more & more forums on fibromyalgia. I have a friend that has suffered silently, has opened up to me & it is surprisingly similar to my stuff. She strongly believes could be. How serious & debilitating it is! I had no idea.

      Stay in touch with me on here if you'd like. Support truly helps get through it all.

      Take good care!

    • shelbyrae
      shelbyrae heather60265

      Posted

      Heather,

      Oh my goodness!!!! This is so scary!!! At the start of all this anxiety was mentioned several times to me & I was floored...no way....Especially with you when you have so much pain!!! Have you been tested for lyme? It has a wide array of symptoms that fit a lot of yours & like you said fibromyalgia fits a lot of your symptoms too...I'll definitely stay in touch with you & please keep me updated... I'm really nervous to get emg results back Wednesday... If it shows nerve damage that means something's definitely going on & I've read that sometimes dr.s can't get to the bottom of it ughhhh...I hope you are going to start feeling better very soon & get some answers! Talk to you soon!

    • lindagkelly
      lindagkelly heather60265

      Posted

      Fibromyalgia is very difficult to diagnose. I read about a "new way of diagnosing fibromyalgia" but it was from 2010 - but it's something like this

      The new criteria avoid tender points and tender point exams. Instead, a widespread pain index coupled with a symptom severity scale is used. The pain index is a 19-item checklist; a person marks the number of body parts where they have experienced pain during the last week. The symptom scale comprises unrefreshing sleep, fatigue, and cognitive issues -- three hallmarks of fibromyalgia. Symptoms are rated on an ascending scale of severity from 0 to 3. The diagnosis revolves around the number of painful areas, number of symptoms, and their severity. The American College of Rheumatology gave its stamp of approval to these new criteria.

      Using the new set of criteria, “we will be diagnosing more people because we are casting a wider net,” Katz says. Fibromyalgia affects an estimated 10 million people in the U.S. and an estimated 3% to 6% of the population worldwide, according to National Fibromyalgia Association. “The number may double or even triple,” he says.

    • Seascape
      Seascape heather60265

      Posted

      HI,

       Just joined up. Noted you mentioned in an earlier blog about having sensation of vibration in your body. Well I had also this prior to my ACDF 5/6 last year. I had v marked compression of spinal cord + one of my symptoms was this vibration feeling over shoulders + down spinal column to between my shoulder blades. Settled shortly after op. Hope this helps.

       

    • Momof4Boys
      Momof4Boys heather60265

      Posted

      Heather, I so can relate to several of your symptoms...I have c5-6 disc herniation, major left upper arm pain, clumsy and shaky uncoordinated left hand and foot, twitching all over, brain fog and feeling off balance...I'm 41 and have a 1 year old and 3 older kids ages 9, 11 and 13.....my neurologist brushed off my symptoms and said I was exhausted from having a baby....I had 2 Meg's that were normal and the neck MRI which showed disc herniation....I'm about to try cortisone shots which might help my arm pain but likely not the other things...I worry so much about Parkinson's or MS...my anxiety is on overload and I struggle daily to care for my baby and older kids...I have been having near panic attacks over all of this....please update me on your condition and if you found any answers...it comforting to know I am not alone in this though it frequently feels that way....thanks sooo much and I hope you (we) start feeling better....this thing is stealing my joy and quality time with my family sad - Danielle

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.