questionable diagnosis

    • June 4, 2017 at 1:39 pm

      I recently found this forum and I would like to ask for some guidance. I appreciate any assistance. My story is rather long and I will cut out what I can but maintain the story.
      I have many aches and pains over the last 7- 8 years. I had significant lower back pain and received several facet joint injections between 2010-12. In may 2012 I had a tick attachment. I subsequently had a single dose of doxy. I never had a positive test for lyme. In 2013 I had a right knee partial meniscectomy ( scoped the meniscus) Upon rehabilitation of the knee I started having pain in my other knee and some issues with my shoulders. I was working in construction and exercising and yard working heavily. I wrote alot of these symptoms off to an over active life. Not long after the knee surgery I also started getting burning pain in my right ankle and foot. I wrote this off to left overs from the knee surgery. I then started to get issues in my other foot and leg. In this time my leg strength was pretty good and I was still exercising alot. I went to an LLMD and was diagnosed with Chronic Lyme. Did a little more than a year of oral and injectable antibiotics. I was not able to see any improvement. I did not have the classic Herx reactions that I can tell. I just have slowly gotten worse and worse. I stopped antibiotics and did nothing for 6 months, besides various supplements.
      My legs are now very painful to the waist. I am dizzy, headachey, fatigued and disoriented all the time. My legs are fatigued but not weak. I feel I could squat alot of weight, but I would be ruined for a few fays.
      I have seen several neurologists. Had 2 normal EMGs at my local hospital. A small fiber biopsy at Beth Israel in Boston, said I was in range, but I read the report and my ankle sure seemed low at a IEFND of 6.2. Had LP in 2015 I think, All normal. I went to a Dr in NYC who is “Lyme literate” and familiar with CIDP. He completed an EMG and NCV and told me I have evidence of mild to moderate conduction issues, and was able to get me approved for IVIG.
      I have had two very small doses of gammunex, 5g and 10g. each creating significant headache during and after the infusion. I pretreated with advil (800mg) and benadryl. I will be having my third 10g infusion at home tomorrow. I will be getting Toradol infusion first (IV NSAID) I have been so tired on these little doses I can barely function. The goal is to get me up to 30g weekly but I feel I will be risking my functionality to do this. I am very scared. I am not certain of the diagnosis. My spinal fluid was normal a year or so ago. My emgs were normal to 3 neurologists and abnormal to one.
      I greatly appreciate anyone who read this long winded plea. Best Regards.

    • June 4, 2017 at 7:34 pm

      IVIg Side Effects?

      It is fairly common for patients to experience headache (which can be mild to severe), stiff neck, fever, and symptoms of a low grade cold during or shortly after an infusion. Patients may often feel fatigued or flu type symptoms for a day or two after their infusion too. This is called aseptic meningitis syndrome (AMS). These symptoms are manageable and can be minimized or prevented by infusing IVIg very slowly.

      If the dosage of IVIg may be hard for you to tolerate, ask your doctor to have it reduced or consider SCIg as an alternative treatment. SCIg does what IVIg does treatment-wise with less possibility of AMS. More info about SCIg here:

    • June 4, 2017 at 7:41 pm

      I forgot to include these links to more detailed info about AMS:

    • June 4, 2017 at 8:21 pm


      Thanks for your reply. I have been reading your posts for months, you are clearly a significant resource for this forum.

      I am concerned both about the side effects and the substance of my diagnosis. I have learned the hard lesson that their are few certains with chronic illnesses of any kind, I just wish someone would tell me with certainty that this is the direction to go in. I can march through with my head down.

      How is switching to SCIG typically regarded by insurance companies? I was originally denied coverage for IVIG until my most recent neuro appealed. This is essentially what I think I paid for with him.

      Does it even seem possible that I could have side effects lasting 4-5 days after a small infusion of 10g?

      I will be having another 10g tomorrow preceded by an IV NSAID. Hopefully it is manageable.

    • June 4, 2017 at 10:02 pm

      Hi Ryan,

      Insurance companies almost always consider justification for IVIg to be the same as for SCIg. They are simply different delivery methods for the same drug (Ig).

      If there is something about the Ig that you are allergic to, or makes you ill in some way, you could switch to the other treatment method of Plasma Exchange. Insurance companies have different policies regarding its justification, although much of that is the same as for Ig products.

      The other thing to consider is that maybe there is something in Gamunex that you don’t tolerate well. Maybe switching to another brand would make it more tolerable. Check with your doctor about that. Here is a comparison of the major brands:

      As far as CIDP goes and knowing whether that is exactly what you have, here is a publication that describes how to confirm it:

      I hope the treatments work for you and work quickly.

    • June 16, 2017 at 10:23 am

      hi guys.. so i don’t know i have cidp but ihave many symptoms took third nerve test.. most things normal but at end it says mild demylineating polyneuropathy..Last night was the worst pain ever i both of my legs burning in both of my legs just around both knee caps non stop for hrs.This started month ago in feet.Before id be like oh i got a pain in ankle or knee a here and there now its worse!!Im taking gabapentin.On top of this i have been having breathing issues in hospital 3 times the last month cat scan shows ground glass non specific..i had pulmonologist appt a 2nd opinion for this cough that won’t go away but i could hardly move this morn i had to cancel.I notice when i eat I’m having problems swallowing a bit.Is this part of cidp.I have to go to a 4 th neurologist soon trying to go sooner than later.I can barely walk and also my heart is reduced.A;lot of stuff going on i know can anyone relate.Im prob going to have to do a spinal tap the nerve pain is now leading to my hands and my feet starting to look like frankenstein.It seems its getting worse and worse.Its frusturating out of work my parents think I’m nuts..Anyone relate help this concerned and worried
      from ny

    • June 16, 2017 at 4:17 pm

      CIDP symptoms vary widely between those of us afflicted. I had breathing and swallowing problems (amongst several others) and many forum participants have reported the same. The symptoms you reported are all fairly common for CIDP.

      I would suggest expediting a decision to get treatment. If there is one thing we know about this disease… it must be treated quickly to help avoid longer term complications.

    • June 16, 2017 at 6:43 pm

      Those can be symptoms of CIDP bcproblems.

      Get to a neurologist asap. As Jim says, the sooner you receive treatment, the less damage will occur.

    • June 19, 2017 at 11:58 am

      I have been diagnosed with CIDP. I live most of the time in my vacation home in Central America. Insurance will not cover IVIG in the foreign county and paying for it out of pocket is out of our financial means. I was treated with one IVIG treatment in the USA of 123grams over 3 consecutive days. Pre-treated with Benedryl and Tylenol. They were NOT kidding about the headache. Headache aside, I can find very little on SCIg for CIDP treatment. This would be a great alternative to IVIG because of the easy delivery system. What I did find in my research is that it has less side effects and can be taken more often to keep the drug level in your system.

      Does anyone have more information regarding SCIg?

      • June 24, 2017 at 7:35 pm

        i know the government has a site for clinical trials. i don’t know the web address, as I looked at it sometime ago, but i remember that you enter in the name of the disease or condition, and they tell you if there are any active, recruiting or completed clinical trials. CIDP was in there (I looked at it when my late father had CIDP) but I don’t know about GBS. They also listed a LOT of foreign hospitals and universities that are in on the listed clinical trials. I don’t know where you are living now, but maybe you could do some research, and see if there is a trial going on where you are. Good luck, and your God bless you! Let us know how you make out!

    • June 19, 2017 at 3:06 pm

      Myraann, please read through the following posts for info about SCIg:

    • June 21, 2017 at 10:34 am

      Hi guys sooo fourth nerve test.. says i have sum weakness and abnormal numbers. My fingers while sitting still move now.Im on gabapebtin 400 mg dnt seem to be working esp at night. The other night for three hrs cinstant pain wehere i couldnt get up.This doc wants to test for other blood work at this point i feel like im a guinea pig.If blood comes back normal spinal tap.Im feeling weakness in hands just holding phone and my fingers also have like what looks like scratch lines goin down them.i cqn barely walk walk with a cane and still habe this cough for a over a minth i see pulmonologist tomm.Also saw cardiologist yest it seems this all systematic but im not sure.Its stressful i just want answers. It said at end of nedve test before mild demlyineating neauropathy this doc said its not as bad as it sounds. I can feel my body is just getting worse##

    • June 21, 2017 at 5:02 pm

      Were you able to get an appointment at Columbia with Dr Brannagan?

    • June 21, 2017 at 5:29 pm

      no i didn’t jimit was different doc and these apps very hard to come by he didn’t have one till july. i couldn’t wait that long. So i went to a professor at montefiore.Hes the one who wants more blood work done.Do u think i have cidp jim?And if so does it seem i have a lot of damage that cant reverse.What was your story btw jim as I’m talking the gabapentin just kicked in ouuuuuuuchhh..

    • June 21, 2017 at 6:02 pm

      I read through it. It explained a lot. I am now trying to get financial help to get the IVIG. Subcutaneous may not work for me. I would like to speak to my doctor, but cannot get an appointment until January 2018. If I cancel my insurance, then I can get financial aid that would pay for the drugs for a year and I could go to any state. That would solve my “can’t get an appointment” problem. As an Illinois resident, I am only covered in Illinois. Since teh University of Chicago was my 11th neurologist and the only one to diagnose me, I think I am better if I cannot go back to same doc, that I go to a center in another state with doctors who understand CIDP. As it is, I am stuck in a loop.

    • June 21, 2017 at 9:21 pm

      Have you tried Northwestern? Here is a doctor their that knows CIDP according to one of the forums respected members:

    • June 22, 2017 at 9:12 am

      No, I haven’t tried Northwestern. I can research and see. Northwestern is certainly more centrally located. University of Chicago is in a tiny nice area surrounded by very bad areas. Northwestern is downtown. Did you have a doctor’s name?

    • June 22, 2017 at 9:27 am

      ok as i get up today my fingers the tips are red there are lines almost look like scratches going up each finger.I also have a pain in right ankle .My fingers shaking more when i sit still.Has anyone gone through this?I need to get this next rd of blood work done I’m calling doctor asap.It seems its getting worse.

    • June 22, 2017 at 10:07 am

      Dear BCProblems,

      I have never heard of those symptoms with CIDP. I suggest you get yourself to an emergency room. Could be some kind of poison or allergic reaction. I have had CIDP for 14 years and I do not think red lines and red fingers are a symptom. Usually, it starts in the feet, then begins to work it’s way up the body. I have it everywhere to some degree. If the pain is really bad, it could be cellulitis. I had it once in the foot, and that was exactly the symptom. If it is, it needs treatment without delay. Try to get to a health professional quickly.

    • June 22, 2017 at 10:23 am

      hi it started in feet went to legs now its in hands. yes pain throughot body. emergency room will do nothing i just have to get blood work done.I have the tingling th numbness.Yet i grabbed ice cubes with hand after 45 mins my hand was nerves are shot

    • June 22, 2017 at 2:13 pm

      Your disease seems to be progressing rapidly. How long ago did it start?

    • June 22, 2017 at 2:26 pm

      Middle of march..Started by the creepy crawlies in my bed i though something was in it it was me.My nerves. So followed up with doc and neuro I’m now on 4th neuro.. this next blood test spinal tap i think will be key

    • June 22, 2017 at 2:35 pm

      I sure hope it works for you. Since March only; that’s really quick. Of course everyone is different, but CIDP is normally slow moving to get to the point you are. I guess I am lucky. I’ve had this since 2003 or so and it started getting bad only in the last few years. I do get the creepy-crawlies where it feels like bugs are crawling on me sometimes. I didn’t know if that was a symptom of CIDP, or maybe a symptom of Neurotin. Weird stuff. I do get get mixed sensations in my feet. Sometimes it feels like I’m walking in a wet sock. Also, I am both numb and hypersensitive to pain. Go figure! I’m interested in what your test results are. What is your area of the country? In my mind, I still think this is being caused by something in the food we eat everyday. It took over 20 years to find out saccharin caused hardening of the arteries and not for everyone. Too bad our country has been behind in medical research for the past 15 years. I am from Chicago originally.

    • June 22, 2017 at 2:37 pm

      And… it took 11 neurologists before I was diagnosed. I’m healthy otherwise, so they kept just shrugging and prescribing Lyrica or Nuerotin while I got worse and worse. All my blood work as good. Tested for heavy metals, poisons, you name it.

    • June 23, 2017 at 6:54 am

      I also live in Illinois. My doctor is in Rolling Meadows, Illinois. He was able to diagnose me in a few days, if your interested in his information let me know I’ll pass it on to you.

    • June 23, 2017 at 9:12 am

      Thank you for the offer. If I continue to not be able to get an appointment with my doctor in the University of Chicago, I might need that. Send the name along just in case. I’m calling them back again today. F

    • June 23, 2017 at 1:31 pm

      Northwest Neurology

      Dr. Ahmir Khan

      3701 Algonquin rd, Suite 800
      Rolling Meadows, Il. 60008

      He is also a great guy.

    • June 23, 2017 at 3:00 pm

      Thank you for the information. I just spoke again to my doctor’s office and they promise me that I can get an appointment “soon”. So I am going to wait a week or so, and if I still haven’t gotten an appointment, this doctor, might be “plan B”.

      Oddly enough, I know this doctor. He was a partner of my neurosurgeon who operated on my herniated and was at this office. My doctor quit and took a teaching job in the University of Mass. I email with him every so often.

      Small world!!

    • June 23, 2017 at 4:44 pm

      Very frusturated symptoms getting worse.. fingertips are red now fingers till move on own while sitting.. Doc i saw other day wants more bloodwork thru the doc that i saw before him.I call today he wants to see me before the blood work appt july 5th.. idk maybe its time to see another doc i cant be waiting that long unfortunately it takes that long to make apptmt.These docs just dint care see me in few weeks but by that time these symptoms will be worse…They close to answers its frusturatting..This last neuro said if blood work normal spinal tap..Any suggestions advice to get thru this?

    • June 23, 2017 at 5:28 pm

      I looked up your symptoms on the web, as I am sure you have done. Nothing that meets all symptoms. Until the doctors can figure it out, you could try an herbal remedy. 1 Tablespoon Turmeric in a cup of hot water 3 times daily. If you can find fresh turmeric root that is better. It helps relieve nerve twitches and inflammation. Not a cure all, but maybe slow down the suffering.

    • June 23, 2017 at 5:41 pm

      ummm it does meet a lot of the symptoms actually and could be disorder

    • June 24, 2017 at 8:37 pm
    • July 2, 2017 at 12:35 am

      ok so as i await to do more work for something specific they want to test.. I’ve had a tough weekend in pain tremendous knee pain and in foot stabbing burning and some weakness in hands.Im taking gabapentin 400 ms my knee today has felt like someone is stabbing it and also pain in other knee.I have not been diagnosed but its frusturating.A friend of mine said to go to hospital earlier i been to hospitals enough the last month.Today i could hardly put weight on my leg for a few hrs and now as i write this it just started again the pain.My question is this has anyone had pain like this.Im walking with a cane i was hobbling on that opposite leg earlier.i don’t know if i should go to another near I’m awaiting my 4th to get into office after 4th to do bloodwork.All the bloodworm has been normal.If normal this time they want to do a spinal tap.on top of this i have ground glass on lungs causing me breathing issues and coughing.The breathing issues are better now but now i have a monotone voice.Im scared idk if its smoking of disorder like ms cider gbs tho it cant be that cause this has been going on 3 n half month now.Any advice helpful thank u.

    • July 2, 2017 at 4:13 pm

      bcproblems, CIDP can usually be distinguished from GBS/RGBS through the following key tests, but GBS usually doesn’t last longer than a couple months:
      • Diminished or absent deep tendon reflexes.
      • A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
      • A Nerve Conduction Velocity Study that measures how well individual nerves can send an electrical signal from the spinal cord to the muscles.
      • Complete Blood and urine tests.

      You appear to have had some but not all the tests. Sometimes it takes them all to confirm or deny the presence of the condition. A nerve biopsy may also be needed in tough cases.

      CIDP rarely remits without treatment and nerve damage usually worsens and becomes more permanent if not treated. More info about CIDP can be found here:

      CIDP can be a difficult affliction to diagnose exactly. Even assessing the results of an NCV is a bit of an art. Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. Other tests can be found in the following publication and may help you and your doctor better understand the disease, its variants, and how to treat it: