not diagnosed but full of questions

    • Anonymous
      December 1, 2010 at 12:46 pm

      What a whirlwind. I am on my third neurologist now and have nerve conduction studies at the end of the week. I am glad to have found this forum!

      I would like to know:
      1. do you think this could be cidp (esp for those who presented with sensory symptoms)?
      2. are there any women around the age of 29 or those who were diagnosed around this age here?
      3. did anyone have tinnitus early on and how has your hearing progressed?

      Short history:
      Sep 2008: formication on both feet for 30 min (didn’t give it a second thought)
      June 2010: postage stamp numb patch found at upper Left leg next to groin (still numb) + tingly tops of feet for 2 weeks
      Sep 2010: Downhill from here–Right toe went numb off and on for one day; global twitches, jerks, even had 3 days of lower abdomen ‘twitches’; little ankle tendons formication after exercise; tinnitus appears and gets worse; ‘cold’ back after walking + zits across shoulders; sharp pains nearly anywhere, but concentrated in now tingling feet; arms and feet fall asleep, even hip and backside; getting weaker in arms and legs; can’t run anymore as too painful in feet and knees; feeling more ‘zaps’ in my elbows and knees

      I have been emailing a neuropathy specialist (the trick is to email the university professors–they are amazing!) and have encouraged me to keep going in tests. The first neuro (after the numb toe) did a clinical exam and I was completely normal and he said ‘see a psychiatrist’ with no further tests. The second did all my bloodwork and MRI of brain and spine–all clear so ‘go see a psychiatrist.’ Finally I found a third who is giving me an EMG on Friday. Unbelievable how I have been treated, but that is another story.

      So what are your thoughts? I am sure that I will need a spinal tap at some point and it is thought to be autoimmune because my symptoms are relapsing (though not know apparently) and global. Thanks for your help!

    • Anonymous
      December 1, 2010 at 2:06 pm

      Your symptoms could be almost anything and it is hard to comment without all appropriate testing. i.e. NCS, LP, bloodwork for autoimmune factors. My husband has CIDP–MADSAM and he has almost no sensory sypmtoms. He has muscle atrophy, decreased reflexes, and lost of function of rt hand and foot drop. i.e. couldn’t hold a coffee cup, turn a key etc. Sounds like you have some sort of peripheral neuropathy happening. Good luck in finding answers.

    • Anonymous
      December 1, 2010 at 9:34 pm

      In general, CIDP usually presents symmetrically, if one foot is numb the other is numb. Begins in feet and/or hands & proceeds in an ascending fashion (up the legs or up the arms), with loss of feeling & motor function. Reflexes usually absent. These are just generic symtoms as to how it usually begins, one must have an EMG & spinal tap for a more definitive dx. They used to also give sural nerve biopsies routinely, but not so much anymore. Your symtoms are so varried, leads me to think maybe something else might be going on?

    • December 1, 2010 at 10:35 pm

      Your symptoms are very similar to my husband’s . His starting with mainly sensory and progressed to weakness in arms and legs and some cranial symptoms over about 8 weeks. He also was refereed to a psychiatrist and was ignored as his symptoms were not “classic”. They did not show on MRI or EMG but were definitely REAL.

      Finally he went to NYC (we live in Ontario Canada) where he was diagnosed, after a spinal tap, with a post-viral , small fibre neuropathy and given 4 days of IVIG. It helped immensely,

      He has seen 6 neurologists (5 in Canada) but has received no further treatment since returning to Ontario in April .

      Keeping pusihng because without “classic” CIDP symptoms it is hard to get treatment.

      Keep us posted.


    • Anonymous
      December 2, 2010 at 3:55 am

      Thanks so much for your replies. I am well aware that I am very atypical, but that it looks autoimmune. And I will not stop fighting! It has been 6 months of being treated like a child and 6 months of increasing physical pain, so I will get to the bottom of it!

      I would like to ask one more thing. I am an American living in Denmark. My residency is in Denmark and so I have no American health insurance. However, I am leaving for the states for one month on Monday. That gives me three more days in this system, one of which will be spent getting an EMG test.

      I don’t like to think that I will go another month damaging my nerves if there is medicine for this. What bothers me most is the ear damage and potential deafness though I have no idea how long that would take or if it has stopped for now, etc (nobody does I suppose) but it feels like it is getting worse.

      Obviously deafness is not worth a Christmas vacation. I could go to the US, pay for the spinal tap there and have the ball rolling and come back with a diagnosis. I def can’t get IVIG out of pocket. Or I could postpone my ticket, but in this holiday season that is probably impossible. Looks like the most prudent choice is to cancel.

      Any suggestions?

    • Anonymous
      December 2, 2010 at 10:40 am

      [FONT=”Microsoft Sans Serif”]this could be anything and your symptoms, while i/we are not doctors or diagnosticians, sound very disturbing and some things may be time sensitive.

      that’s my opinion.

      prednisone may be a cheap initial treatment to consider if your doctor thinks the condition is autoimmune/inflammatory in nature. just a thought.

      it also may be prudent to begin setting up medcaid in the US: [url][/url]

      just for fun, i tossed your symptoms in a search on found this:

      best of luck–keep us posted.


    • Anonymous
      December 2, 2010 at 11:27 am

      Yep, I agree it could be almost anything. And, yes, standard CIDP is generally believed to be symmetrical. However, other variants of CIDP may not be symmetrical.

      First of all, I wanted to understand that word you used, ‘formication.’ Interestingly, to me, it is a word not found on a search of this site except in your post. So, I looked it up as much for my sake as for the other readers here.

      “Differential diagnosis

      Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as diabetic neuropathy, skin cancer, syphilis, or herpes zoster.

      Formication can also sometimes be experienced during high fevers. Itching, tingling and formication often occur when surfacing from a dive or during ascent to altitude (decompression sickness or the bends).

      It can be a side effect of Ritalin (methylphenidate), Adderall (dextro/levo-amphetamine) and Lunesta (eszopiclone) and other prescription drugs or of cocaine or amphetamines. (Accordingly, it goes by the slang term “coke bugs”.) Formication can also be a withdrawal symptom of weaning oneself off of cocaine or amphetamine. It can also accompany alcohol withdrawal in alcoholics, along with delirium tremens, and can often be accompanied by visual hallucinations of insects.”

      Now, I’m not suggesting you have any of those things. Only that nobody here has used that term before.

      Dr Lewis says, in an article linked to by Emily’s mom that “Papilledema with pseudotumor cerebri syndrome (eg, headaches, transient visual obscurations, pulsatile[COLOR=”Red”][B] tinnitus[/B][/COLOR], visual field defects) are observed rarely in patients with CIDP and are due to a very high CSF protein level (usually >1000 mg/mL).”

      So, the spinal is a good test to rule things in or out. However, even a negative spinal tap does not rule out CIDP.

      Time may or may not be of essence. My question would be- what tests can I get done, at home, in the next month? If you have to wait for 3 months to see a specialist why, heck, make the appointment and take your trip.

      good luck

    • Anonymous
      December 2, 2010 at 12:14 pm


      I would have to agree with Alice that this may be fibromyalgia if your tests are “normal.” I presented with very bizarre symptoms, a lot of neurological symptoms, after the H1N1 flu vaccine last year. I went to 6 neuros in total and all my tests were “normal”, (3emgs/ncv’s, no spinal tap, skin biopsy, sweat test, numerous blood tests, MRI’s) despite losing my reflexes, having arm weakness, numbness/tingling, hypersensitivity, etc. The neuros said it could be mild GBS or dysautonomia (where your autonomic nervous system goes out of whack.)

      I am now treating with a rheumatologist who is on the working diagnosis of fibro, but is still doing tests. My nerve issues have improved, but are not gone completely, and have been replaced by muscle and joint pain and a host of other issues, all very uncomfortable and unpleasant. Mind you, I had NO to few problems before this vaccine so it was all triggered by this, even if the medical community will not totally accept this. I would recommend that you keep exhausting your options with the neuros, and make sure that you see good ones.

      As for tinnitus, you should have a hearing exam by an audiologist. I have had moderate to severe hearing loss since birth, and oftentimes get tinnitus. It can mean that there is some hearing loss going on, but most often, it is benign. Go get an audiological exam to be sure. If there is hearing loss, you want to catch it early, and see an otolaryngologist to see if there are any preventative measures. I was recently told by my audiologist that if you have a virus that can cause hearing loss, there is a 48 hour window in which to prevent this. Now who knows that this is happening and can catch it in time? Beats me, but I suspect that may be what happened to me since my hearing loss was not diagnosed until I was 3. I learned to read when I was 3, so I must have had hearing at some point. If you do get hearing loss, there are hearing aids and cochlear implants. I have worn hearing aids my whole life, and have gone to normal schools and law school, so try not to worry about this so much! 🙂

      Good luck.

    • Anonymous
      December 2, 2010 at 1:08 pm

      I wanted to add that I have had muscle twitches for a YEAR, daily and hourly, constant. They started one month after the vaccine and have never gone away. Muscle twitches are a part of fibro, but they can also be indicative of another disease, like CIDP, RA, etc. so you really need a thorough exam.

    • Anonymous
      December 2, 2010 at 2:40 pm

      You have all been really helpful–thank you so much! Lots to respond to…

      It is very interesting to learn about the link with tinnitus and high CSF protein and that it is unusual with CIDP. It is very concerning to me, as it is waking me up when it is really loud (it comes and goes). I have told the neurologist who is seeing me tomorrow and he did not say it was an immediate emergency…I really hope this 48 hour rule is not what is happening in my case. It is so hard to know what to do. I read that tinnitus can be accompanied by PN but not deafness, which is CNS (and I imagine why people with MS have this problem but not people with CIDP if even tinnitus is rare?). I also found it interesting to read that there is a connection with tinnitus and skin cancer, which I had when I was 11 years old, but it would be a big surprise if that is what is happening now.

      Also, sorry I didn’t explain that formication is like a million ants crawling and biting your skin. That surprises me that it is not experienced by people with CIDP because I thought it was a pretty standard peripheral neuropathy issue, just like burning or tingling.

      I have not had a vaccination any time recently, but I did live in China from 2005-2007 as a Peace Corps volunteer and to put it mildly it was horribly polluted. I was also anemic in 2004, but that was corrected.

      I see what you mean that it might be fibromyalgia, which would fit better with my gender and age. I do not however have pressure spots of pain.

      My mother has put together prices for procedures in the US. I have been told whatever is happening is probably not metabolic or toxic, but I will have these tests anyways, including pre-diabetic to rule it out (and try and get closer to an answer).

      I think I will go to the US and the question now is…what about this tinnitus? On this website it says prednisone can stop autoimmune tinnitus and if I am in a race I obviously need to get this as soon as possible.
      I will talk to the doctor about it tomorrow.

      Thanks again for reaching out with your suggestions and support. Of course it is a bit wreckless of me to self-diagnose, but when you are being told nothing is wrong it is automatic or self preservation/survival to do so. I will let you know what happens tomorrow.

    • Anonymous
      December 2, 2010 at 4:49 pm

      Years ago I had tinnitus and saw a doctor about it. He held my hand and questioned me about anxiety. In the end he told me that it was likely anxiety related and he was right. Once he discussed what was bothering me in my life (I have MS not yet diagnosed then), the tinnitus went away and never returned. Maybe your other sx’s are so anxiety inducing that they are causing tinnitus?

    • Anonymous
      December 2, 2010 at 6:45 pm

      Every month counts… especially in terms of treatment, and recovery! It took me 14 months and it wasn’t a minute too soon! For several years things were in total abayence, meaning things didn’t get worse, times even better!
      Note also that set-backs are the norm, and be prepared for that.
      As for Nerve testing? I showed only slight diminishing of functions at first. It took a good 6-9 months of partial immobility and inactivity, plus increased nerve pain progression. It’s well documented that many CIDP cases do not show total disability to the degree of GBS folks.
      Read this web site about nerve and muscular diagnostics…it’s VAST. It also will let YOU know that your doc can’t know about ALL of this?
      url and this portion in particular: url
      Do NOT LET THIS SCARE YOU! Use it’s info as your tool to zero in as to what you have! Read up about the testing and know what you are in for…it’s a long road? But much shorter if you go thru ‘the mill’ and get diagnosed and treated! At least? Find out and keep track of the tests that are done – get copies!!! They can tell you more than you mite want to know? Or not much -either way you know where you stand or wobble in some quarters.
      Whatever you do? Keep your descriptions as concise and as consistent as possible! IF you have new ‘developments’? You can use your past consistent descriptions to augment or amplify and new ‘developments’!
      AS FOR ‘ANXIETY’? DUH!???? Who wouldn’t be anxious with this stuff! If they’re NOT anxious? I’d really worry.
      Keep faith, keep at IT and Bless you for your efforts!!! It’s not easy I know, but it’s worth it in the end. HUGS!!!!!!!!

    • Anonymous
      December 2, 2010 at 7:49 pm

      “AS FOR ‘ANXIETY’? DUH!???? Who wouldn’t be anxious with this stuff! If they’re NOT anxious? I’d really worry.”

      Sometimes I think the above is why this forum is dying a slow death. i.e. the sarcastic responses. I was just offering a personal experience trying to reassure her, and getting a comment like that makes me want to toss in the towel on ever bothering to respond.

    • Anonymous
      December 2, 2010 at 8:50 pm

      Hey, we’re all in this together. It is well documented that anxiety can bring about all sorts of physical symptoms, including tinnitus and even tingling and other neurologic-type symptoms. Some people have actually lost their eyesight!

      Having said that, it is vitally important to undergo all relevant medical testing to rule out — or in –an underlying medical cause for the symptoms.

      Of course we are all stressed and anxious to some degree with CIDP. It is a formidable foe. All the more reason we need to help each other as much as we can here. Let us not judge others too quickly. People have different viewpoints, and different ways of handling things and of expressing themselves. Let’s respect that, with compassion for others and ourselves.;)

    • Anonymous
      December 3, 2010 at 3:31 pm

      So EMGs are not so fun. The doctor said my motor nerves are normal and I have to wait for the sensory results.

      He also said don’t worry about the tinnitus. Great. So in the meantime I wrote a few otoneurologists state side at teaching universities. Some have already written back and uniformly replied that I now need auditory tests and could have some hearing loss. I am sick to my stomach as there is nothing to do till I get to the US and then I don’t even have an appointment… You can’t get these auditory tests in an emergency room even though I may need “emergency” steroids. I was told it is ok if I have to wait a few days for the test but that it is an immediate problem. I am so SICK of doctors (neuros for one) being so specialized that they can’t even see what is connected and what is an emergency. I am really upset right now and scared about my hearing whilst all of these other things are inexplicably happening in my body with “normal” test results…wow I don’t know what to do but will start next week when I get to the US immediately…

    • Anonymous
      December 3, 2010 at 8:58 pm

      Cope good luck with getting things sorted out when you get back to the States. In all likelihood, the steroids would certainly be a good test to see if they address the tinnitus and other symptoms. And it does seem that there is a lack of consistency with these neurologists as far as what they believe to be symptoms of CIDP i.e. the tinnitus. Many people on the forum have commented on this over the past years concerning many different symptoms. Here is a blog on CIDP in which tinnitus is commented on [url][/url] Keep us posted.

    • Anonymous
      December 12, 2010 at 8:24 am

      Thanks again for all of the help and feedback you have given me in this strange time.

      Well, it is not all in my head. The EMG came back normal, but the somatosensory evoked potentials did not. I have only been told, by the secretary, that I have a new appointment for the end of January because the SEP showed abnormalities in my legs and eyes.

      I have no idea what to make of this. No idea. That is CNS and PNS. I wonder if I should even ponder it at this point considering I am clueless about the results and what they could mean.

      So I imagine you all do not have [I]eye [/I]problems because that is CNS? I still think what I have is autoimmune because of the presentation. Would MS show abnormalities in the legs, i.e. coming from the legs the signal is slower because of problems in the CNS? OR would SEP problems in the legs mean actually in the PNS in the legs? I can’t begin to contemplate that I have a disease in both. I wonder if it is progressive MS that more rarely shows on the MRI. Gee whiz…

      I am in the US now and will try to see a neuro here with these results at least to get a consultation and some idea of what is going on and what i need to do next. Then I will see a neuro back in Denmark late January. Can’t stand the waiting…

      More unanswered questions but at least closer to solving this…thanks again for your help and any ideas on the SEP reading are welcome.

    • Anonymous
      December 12, 2010 at 7:06 pm

      Wow, I can understand your challenges in trying to cope (smile) with all this.

      Please confirm, since I have not had these kinds of tests, that for the evoked potentials you had:

      “One set of electrodes, which will be used to measure the electrophysiological response to stimuli, is attached to the patient’s scalp using conducting paste.”

      From what I read on-line there are three categories of evoked potentials and they are auditory, visual, and the kind you mentioned “Somatosensory.”

      For the auditory you would sit in a soundproof room with headphones. For the visual you would sit close to a screen a watch a shifting checkerboard pattern. Finally, for the Somatosensory you would have tiny shocks delivered to an arm or leg.

      The key to all of these are the pads pasted on your head.

      Finally, is there any chance the secretary said you had abnormal motor and sensory results? Those kind of sensory tests involve the nerve conduction portion of an EMG/NCV and probably are not evoked potential tests.

      No matter what, have the best possible holiday season you can muster.

    • Anonymous
      March 1, 2011 at 4:07 am

      Thanks again for the support on this site.

      I am still confused. They repeated the somatosensory EPs and it came back normal the second time. So they then did a VEP and MEP, both normal. Their best guess is potentially early MS, but I have never been typical for MS and I keep reading that first symptoms for many here were feet, esp toe parasthesias and numb spots, like what I am experiencing (my parasthesias are all brief, max 5 or so hours and usually very quick and fleeting).

      I was told by the neuro that they would repeat tests in a few months if symptoms continue. Now my feet are feeling wrong almost constantly, more and more with sharp pains.

      I haven’t had a spinal tap yet. Do you think I should? I have heard so many stories of false negatives or positives, and if I understand correctly, it is best to have this done around an “attack” to see the bands. I don’t seem to be having “attacks.”

      Currently everything is manageable and I am grateful for that, but it just isn’t going away and I guess there is nothing to do but wait a few more months and repeat the tests or ask for a spinal tap now?

    • Anonymous
      March 1, 2011 at 8:34 am

      Discuss with your doctor whether he thinks it is appropriate at this time to do further diagnostic testing, including a spinal tap, nerve or skin biopsy, etc. You can always also go to another neurologist and get a second opinion on your condition and whether you should undergo additional testing.