I had an EMG test too--indeed, no fun. My EMG didn't reveal anything. Did yours reveal something?
My EMG revealed damage to the nerves in my hands and feet. My spinal tap showed a highly increased protein level without the presence of elevated white blood cells. These together pointed to GBS. I was diagnosed in June and am still dealing with it so they rediagnosed me as chronic. I could have missed this in the discussion, but what symptoms are you experiencing that makes you think it’s Cidp?
Dana said:
I had an EMG test too–indeed, no fun. My EMG didn’t reveal anything. Did yours reveal something?
When I was diagnosed a little over a year ago, my reflexes and issue with my gait became really evident within 2 months of onset. The first 2 months when I had very strange neurological issues happening (swelling, sweating, twitching, metallic taste, autonomic issues with heat and the paresthesia in my hands and feet), my EMG came up normal. I saw 4 neurologists and was in the ER twice panicked. It wasn't until I went to a neuromuscular physician that a spinal tap (showing protein) and a new EMG (much more thorough) was ordered and confirmed CIDP along with my physical examination. At that time, I was hardly standing, had no dexterity in my hands. For 2 months, I sought proactively to have all the other tests to rule out different diagnosis (Lyme, lead poisoning, thyroid, MRI- MS, etc.). It looked like CIDP, but the original EMG had the neurologists thrown off.
I hope you get some answers!
Thank you so much for replying. This is very helpful. I am desperate and don't find anyone who has my symptoms. My EMG was normal, but it was in my arms, and my main problem is in my legs.
Dac1223, I have several questions: 1. in what way was the second EMG you did more thorough?
2. You said that at the time you could hardly stand. I can hardly stand myself and am in a lot of pain. Were you in pain? What changed the situation since? Can you stand now and what did they do to help you once you were diagnosed?
3. What kind of paresthesia and other weird neuro symptoms you had in hands and feet? I have numbness at night--hands and feet--and a lot of burning all over my body, plus weird sensations, like being hit with a cold tip all over the body.
4. I am surprised you were able to see so many neurologists in such a short time. Where do you live and how come it was so easy to get several appt. so close to each other? My dr. wouldn't even give me a referral to so many people. And you said that the neuromuscular phys ordered the spinal tap. Is that also a neurologist?
5. What did the MRI show?
Thank you.
Daniela
Dana said:
Thank you so much for replying. This is very helpful. I am desperate and don't find anyone who has my symptoms. My EMG was normal, but it was in my arms, and my main problem is in my legs.
Dac1223, I have several questions: 1. in what way was the second EMG you did more thorough?
2. You said that at the time you could hardly stand. I can hardly stand myself and am in a lot of pain. Were you in pain? What changed the situation since? Can you stand now and what did they do to help you once you were diagnosed?
3. What kind of paresthesia and other weird neuro symptoms you had in hands and feet? I have numbness at night--hands and feet--and a lot of burning all over my body, plus weird sensations, like being hit with a cold tip all over the body.
4. I am surprised you were able to see so many neurologists in such a short time. Where do you live and how come it was so easy to get several appt. so close to each other? My dr. wouldn't even give me a referral to so many people. And you said that the neuromuscular phys ordered the spinal tap. Is that also a neurologist?
5. What did the MRI show?
Thank you.
Daniela
I completely understand the desperate feeling and empathize. The experience I had at the Cleveland Clinic, where I was diagnosed was “180” from prior care. Maybe, it is due to my neurologist herself. Also, I am a little “passionate” about the path to diagnosis given my own experience. I couldn’t say on your diagnosis, but you may want to see a neurologist in the neuromuscular area. To expand on your questions:
1) My symptoms were equally balanced on both sides of my body. When a symptom was active in one hand, I also had it in the other. Same with legs, feet, arms (peripherals). I am not sure why they only tested your arms, but I am not a physician. This said, when CClinic “redid” the EMG, they focused on 1 side (my full left arm, hand, leg and foot) in very concentrated sections and I would call my original EMG test “light” compared to the intensity of the second test. It was still bearable. My hands turned out to be the worst in terms of damage; this is where the symptoms original presented. They also put my hands in water before testing. I just can't remember why. The testing itself was longer. The thorough comment is my perception, NOT scientifically basedJ
2) It’s been a year+ since onset and I have had very little pain. I am very lucky on the pain front as it seems very common. I had some arthritic feeling in my hands intermittedly and some pulsing in my arms when this originally presented (pre-IVIG treatment). The biggest pain I had was from showers where I had a sensitivity to heat (autonomic). I felt like I went from rolling out in the snow to a hot shower. My body itched and burned at the same time. I wanted to crawl out of my skin for about 10 minutes post-shower. I had to switch to luke warm water.
3) In terms of original symptoms before I started IVIG: I had the tingling in the hands and feet (paresthesia). This wasn't constant, but overtime, it's appearance moved up my arms and legs as I weakened. As it moved up my limbs, I was more shaky then tingling. My face twitched intermitteduly. I had some hot flashes during the day, hot feet at night. My mouth had a metallic taste. I had the burning feeling associated with heat mentioned above with water. I had a few weeks where I thought I had a UTI (This subsided), but labs ruled out. I would sweat in my palms out of the blue, while my hands would swell up and turn red (sometimes they became stiff and would feel cold and sometimes they’d shake). On the latter, I had a hard time typing. I started to arthritic wear gloves in the house. Some of these symptoms would come and go. The only thing that remained constant was my weakness once it started to get worse the second month (gait became progressively bad, some shaking). Eventually, I could not do stairs. I couldn't judge space. I would drop my keys on the floor instead of the purse. At this time, I knew I couldn't drive. My reflexes started to go slowly. They disappeared the second month. At the worst (for me), I couldn't twist off a cap, button my shirt, brush my hair (without dropping brush), stand up without support. I even went to the ER. I was having some chest pressure (probably anxiety from not having an answer) at the time the pain in my arm happened (light). All that said, please keep in mind that symptoms vary from one CIDP patient to another. The gait/balance, weakness, paresthesia, loss of reflexes seemed to be common indicators. A year of IVIG treatment has returned my reflexes.
4) With my current insurance, I don’t require a referral for specialists. I only went to 4 neurologists because the first 3 offered no answers. The first neurologist (MD referral), ran the EEG, first EMG (and MRI) and said he didn’t know, offered a referral, which I didn’t accept because the referral only handled MS patients and this was already ruled out??. The second one was with a reputable teaching hospital and was referred to me from the ER visit (above). He was stuck on me having an iron deficiency when tests clearly proved otherwise. He only had to hear I was vegetarian and had a prior/resolved issue with iron to conclude (even though my labs showed normal iron levels) that it was anemia. He actually ran a weekend trial on me with Mirapex (for restless leg) and said if it was due to anemia, my symptoms would improve. His test failed and when I reported back, he told me that he still thought it was anemia, to get my iron up and if I still had issues, to come back. The third was stuck on the initial EMG being normal, but said my physical exam looked like CIDP. She offered to treat my symptoms with Neurontin (pain wasn’t my main issue). I shared all blood-work and tests between each one of them in advance. The fourth diagnosed me at Cleveland Clinic neuromuscular area.
Working through my MD and the initial neurologist, I requested labs to rule out other potential causes (Lyme, thyroid, heavy metals testing- given the weird tastes I had). In between, my sister in law showed me an article about reactions to the flu shot. My symptoms came down within 2 weeks of a first time flu shot. When I researched CIDP, I felt like I was looking in the mirror. My md and the ER said at 1 point, the neurological issues could be a reaction to the flu shot, but never put a name to it. I immediately sent my files to a neurologist in India ( an online service I subscribed) and she told me it sounded like CIDP and recommended the blood-work and tests (spinal tap) I may need. She said if I did have CIDP, they will likely want to try IVIG asap. I called the GBS/CIDP foundation and they told me to see a physician in a neuromuscular area. I set up an apt in weeks to see the Cleveland Clinic, out of state for me. I faxed all my blood-work, tests, etc. The whole team read it in advance. This was the first time any neurologist spent a significant amount of time with me.
5) Brain MRI confirmed not MS, but the fact that I have symptoms on both sides equally may have been all they needed. I just happened to have a brain MRI from that year on file. I actually never needed an MRI, but that is a whole different debacle related to my original MD and neurologist, unrelated to this CIDP. It is part of the reason why I am my own advocate in researching.
To be fair, it is not a widely understood disease, but I can’t give a pass to my initial physicians. I was still able enough to be aggressive and my work was supportive, had good insurance. My quick diagnosis was due to the prior, sites like this, the foundation's guidance, family support, and a great physician and team who diagnosed me.
Thank you so much for this thorough answer. It's very helpful, given how dismissive the doctors have been with me. When they did the EMG at the Cleveland clinic, did they only do the stimulation with that machine (don't know how to call it) or did they also do the thing with the needle? It's the part with the needle inserted into the flesh that I found very hard to bear.
You mentioned that someone recommended the spinal tap, but it's not clear whether you really had that done. Did they do a spinal tap and what did they find?
I was told by a doctor that I couldn't have CIDP because I "didn't have breathing problems," yet on this forum no one does. Do you?
Hello:
On the EMG, they did both (was over 2 hours). I was pretty numb on my peripherals & some other places; so, my pain tolerance was different that it is now that I am recovering most of my sensation (with IVIG). Not enjoyable as you saw. I just kept thinking of the end of the road- getting through the tests will help me obtain a diagnosis & I was ready! I don't think my current neurologist and her team would have conducted the tests if they didn't think from my physical exam and symptoms that I had CIDP. The spinal tap- they would not have. They did this after EMG. See below my comment on getting a second opinion.
I had a spinal tap on a Friday after the EMG earlier in the week. The spinal tap was more of a final confirmation. They were very efficient in getting me in for all the necessary diagnostics as I was out of state. The spinal tap procedure was ok for me. I used my spirituality to work through any initial angst. I personally didn't feel a thing during the procedure. I am happy for a good surgeon too and all the elements that aligned. It is good if they have images as they did for me. I didn't have any headaches later, but I booked hotel for the weekend just in case. I followed all the instructions on fluids and resting/laying down. It is a one step at a time thing; first find someone who suspects CIDP or something else (has some answers/ hypothesis).
My CSF from the spinal tap showed high protein. That was the indicator, especially with my physical exam (Gait, lack of reflexes, dexterity, and progression of the symptoms) and the EMG results. She also reran/included some new labs to rule out other possibilities for the neurological issues &/or possibly triggers for CIDP (west Nile). I had high inflammation noticed in my sediment rate results. The labs (list attached here) are not comprehensive, because I ran a lot of them prior and shared them with my neurologist. It looks like you have tested for Lyme.
Also, below is a list from the CIDP booklet of the GBS/CIDP Foundation regarding symptoms which Neurologists look for during physical exam. I haven’t noted how long you have experienced the Paresthesia-like symptoms? Paresthesia in my hands was first symptoms for me and would come and go for a few weeks. At first I thought it was carpul tunnel. Then it started getting coupled with odd neurological symptoms like the hot flashes, metallic taste, nose twitching. Etc. I remember conducting a training session, I started to get hot flashes, my palms were sweating and my face started twitching. No-one reacted, but I was horrified on the ride home. I even thought- is this hormonal? Then, my feet started up the following week and the metallic taste.
From what I have read here, people's symptoms sometimes develop more slowly. I have heard of autonomic issues (systems) as a parallel issue with CIDP and in fact feared this with temperature issues (hot/cold sensations and reaction to warm water). My neurologist didn’t want to test for it until I had been on IVIG for some cycles. She said sometimes those things resolve themselves with treatment (and they did in my case). That said, I haven’t seen that breathing troubles are a common indicator? Maybe with GBS, the acute form, but even so, not all GBS patients end up on a ventilator. Sometimes, it doesn't travel there. I am not sure I understand your neurologist's input.
If you can and you feel that you could have CIDP from your research, I'd get a second opinion from someone who can recognize CIDP (has experience). I would go to someone who can ALSO recognize other conditions as you don't want a narrow focus. You just want an accurate diagnosis.
From the CIDP booklet:
"The symptoms the patient experiences and the neurologist
confirms by examination include:
• Muscle weakness
• Loss of deep tendon reflexes
• Poor balance
• Distal loss (feet or hands > calves or forearms) of sensation
including the ability to feel pain, light touch, vibration
• Decreased perception of the position of a body part relative to the space around the patient which is otherwise known as proprioception.
Although most patients manifest weakness early in their disease,
a predominantly sensory form can occur that results in poor balance,
clumsiness, and falling. Seventy percent of these primarily sensory
patients develop muscle weakness within two to three years."
Again, my symptoms developed pretty quickly over a 2 month period, but not all symptoms were present in month 1. Everyone is different. From what I see, some patients have these symptoms present (the onset) over a longer period of time. I also never had the type of nerve pain so many others endure/d. The demyelination only got to my myelin sheath by the time I had my loading dose of IVIG. I had no axonal damage when my second EMG was ran. This is due to early diagnosis.
I respect the 8+ years of physician education over my internet research :), but we know our body. Some of these drs. don't take the time to fully educate themselves and can be so dismissive. You have to be your best advocate. Get a second opinion, especially if you don't have answers yet that fit.
3-Tests.JPG (15.5 KB) 4-Test2.JPG (15.3 KB) 5-Test3.JPG (7.43 KB)
Just to confirm- I am not advocating that these are the proper diagnostics/labs to run. I am just sharing what was done in my case. Each case is individual. You can see that some of the tests were on the spinal fluid.
Thank you so much for taking the time with all this. It is immensely helpful. My biggest problem is that I had some symptoms last year, which were acute for a while, but then diminished, so I stopped looking for answers after having seen a rheumatologist and a neurologist who didn't find anything. I am pretty sure I got some infection because of the weird attack I had in July 2014, and the fact that your dr. said that CIDP could be triggered by things like West Nile confirms that. Also, thank you for sharing your tests. That gives me an idea--I saw they also tested for Lyme and herpes virus in your CSF.
At this point my main symptom is severe weakness in my legs and pain all over when I stand. Basically, for the past 6 months I have become a person who can hardly walk, and when I do that I am in a lot of pain. It is not nerve pain, but muscle, tissue and bone pain. I guess I should write to the rest of the group and see who else has these symptoms.
You said something interesting about 8+ years of physician education over Internet research. I have been doing intensive research over the past year, but why did you have to do it for the past 8 years when you were diagnosed only a year ago?
Thank you,
Dana
Hi Dana:
Glad it helped. The 8 years referenced was in relation to our neurologists education, not mine. Just saying I respect that I’m still new to this and my experience is limited to my own condition and my research. This is still new to me.
I hope you get answers soon!
Sorry, Kelsey. Just read your reply. Since August I've been having severe weakness in my legs and it's very hard to stand up. I force myself to get out of the house and walk for about ten min, but after that I am in a lot of pain. I am also in a lot of pain after I exercise at physical therapy. I spent the last 3 days laying around in the house and the pain is not as bad, but I am terrified of becoming an invalid and not being able to walk again. Don't know if I should push myself to walk in spite of the pain. When I brush my teeth I need to sit down--it's that bad. I have numbness in hands and feet but only when i sleep, not during the day.
You said: "My legs got weaker and weaker until i was no longer able to stand up. My hands also lost almost all their strengh and coordination. It became difficult to feed myself. From the time i felt the nubmness to when i had to be hospitalized was only a month."
Can you stand up now?
Dana
Kelsey Johnson said:
My husbands hands go numb at night quite frequently. His is caused by his back being out of alignment.When I first noticed my numbness i thought it was caused by the same thing. But mine started progressing up my legs. I started falling. My legs got weaker and weaker until i was no longer able to stand up. My hands also lost almost all their strengh and coordination. It became difficult to feed myself. From the time i felt the nubmness to when i had to be hospitalized was only a month. You didn't mention what your other symptoms are. What else are you dealing with?
I wonder if the evening numbness or pain is due to daily stress catching up to us. My pain is way worse in the evening than in the daytime. Just going to a doctor's appointment wipes me out for several days too. Fatigue is set off by doing so little.
I didn't know that respiratory problems were part of CIDP. Is it the inability to move the muscles to breathe? the remembering to breathe? I use oxygen at night because I forget to breathe when I sleep. Is that what you mean by respiratory problems? I just thought that was an after effect of being resuscitated twice. It's a problem for those of us who have been resuscitated.
Thank you to anyone who can explain this to me.
JanD
JanD said:
I wonder if the evening numbness or pain is due to daily stress catching up to us. My pain is way worse in the evening than in the daytime. Just going to a doctor's appointment wipes me out for several days too. Fatigue is set off by doing so little.
I didn't know that respiratory problems were part of CIDP. Is it the inability to move the muscles to breathe? the remembering to breathe? I use oxygen at night because I forget to breathe when I sleep. Is that what you mean by respiratory problems? I just thought that was an after effect of being resuscitated twice. It's a problem for those of us who have been resuscitated.
Thank you to anyone who can explain this to me.
JanD
I don't know what the reason for the respiratory problems is--it wasn't explained to me--and it seems that almost no one here has respiratory problems. So, I just read about it and my GP mentioned it.
Do you or anyone else use an oxygen concentrator when you sleep because you forget to breathe? Such weird stuff!
JanD
Dana said:
I don't know what the reason for the respiratory problems is--it wasn't explained to me--and it seems that almost no one here has respiratory problems. So, I just read about it and my GP mentioned it.
No.
Sorry to read that you are not doing well. My reflexes are still fine, but was diagnosed with CIDP. The diagnosis was verified by a spinal tap and the amount of protein in my spinal fluid. It took over a year of visits with local providers and the Mayo Clinic in Jacksonville, FL to get a diagnosis, but I did finally get one.
My balance is getting bad and am starting to have shortness of breath, but right now most of my issues are in my feet, thighs, shoulders and right arm - significant pain in all areas and pins and needles and burning in my feet.
Hope you get some help soon.