HELP! FEEL SO LOST IN ALL OF THIS

    • amysplawn
      March 14, 2018 at 1:22 pm

      Hello! I am hoping there are some of you on this forum who can help me or at least tell me if they experienced similar symptoms during the onset of what became a CIDP diagnosis. Here is a little back history (and thank you for reading). I am so desperate for answers and feel like doctors think I am CRAZY.

      One year ago (roughly around the same time) I started experiencing very strange sensations in my hands and feet. It was on both sides but would not always occur simultaneously. The pattern was any of the following:

      sensation running from forearms to fingertips
      sensation running from knees to tops of feet

      I have to call them sensations because they are by far the strangest things I have ever felt in my life. They have never been painful but VERY UNCOMFORTABLE. The way I described it to my neurologist was like a buzzing/ or mild vibration radiating from the inside to the surface of my skin. I sometimes describe it as a creepy crawly sensation or like nails on a chalkboard When I get it, I immediately grab the part of my body where it’s occurring and try to squeeze to stop the sensation.

      I never really thought anything of it although it did freak me out a little bit but it eventually went away.

      Fastforward to January 21 of this year. The sensations started coming back. I immediately recognized them because they happened the exact same way. I started with an integrative medicine doctor because sometimes they look more thoroughly at things like food allergies, vitamin deficiencies, etc. but while I was waiting on my bloodtest to come back, I decided to make an appointment with a neurologist (on 2/6 of this year) so roughly two weeks after the sensations came back.

      At the time of the appointment, I had already started feeling other things going on in this order:
      1.) radiating groin pain
      2.) strange tightness in my back legs
      3.) radiating pain wrapping around hips and running into front of thighs
      4.) mild foot cramping
      5.) mild hand cramping

      I gave all this info to my doctor. He performed a MRI of the brain and cervical spine and suggested we do an EMG.

      The MRI of the brain came back normal/the cervical spine showed mild degeneration on the C4-6 vertebrae. He ran extensive bloodwork panels (ANA/etc) and only found that my homocyesteine was slightly elevated. He performed ONLY the nerve conduction portion of the test. When I asked him what the “red spots” on the nerve conduction test meant, he said he was seeing minimal nerve damage due to a B12 deficiency because I wasn’t methylating properly since my homocyesteine was elevated. I also asked him why he didn’t perform the needle portion of the test and he said he got all the muscle information he needed from the nerve conduction test.

      When I looked at my results online, he coded my EMG as “abnormal” when I asked him why he said, “don’t you remember us talking about the b12 deficiency causing all of this?” Mind you, my B12 wasn’t great but it wasn’t low (464 total). I later found the notes of his EMG which read, “MILD AXONAL DEMYLENATION PRESENT.”

      Fastforward one week from the EMG (which was on 2/19)

      1.) I started experiencing very strong muscle twitching in both my right and left thigh (front portion). Some twitches would last ALL DAY.
      2.) I also started experiencing this sensation of my shoes not feeling right on my feet. Like, they were heavier than normal. I tried explaining this to my husband and he looked at me like I was crazy. All I wanted to do was take my shoes off and walk barefoot because I felt more grounded.

      I called the neurologist in a panicked state. He brushed me off and told me to keep taking the B12, go the PT and for now he would give me one pack of Methylprednisone to alleviate some of the inflammation.

      I FELT GREAT ON THE PREDNISONE!! LIKE THE OLD ME!!

      Then after dosing down, the “new Amy” started creeping back in.

      While the groin pain still occurs, although with less frequency, I have started to experience knee pain. There are times where my knees almost feel like they are going to buckle on me.

      My integrative doctor recommended I try and infrared sauna to “detox” and BOY WAS THAT A MISTAKE. I don’t know if it was the light from the sauna but after my second visit all the joints in my hands/fingers felt like they were breaking and the tops of my hands felt like they were on fire.

      Yesterday, the sensations came back with great fury and were mainly consistent in my hands and forearms. They were so strong, it felt uncomfortable to try and make fists. And it was literally driving me crazy to type because the sensations seem to be worse when I’m moving or by something that is vibrating.

      I met with another neurologist last week and even though she couldn’t find anything unusual about my exam, I kept trying to tell her I just don’t feel as strong as I usually do. Even in my PT, it feels like the most excruciating work out ever and I am not that wimpy normally. But I guess because I’m not dragging a leg behind me or I can still squeeze her fingers, telling her I don’t feel as strong as I used to isn’t enough.

      But she still wanted to do her own EMG because she thought it was really weird that the other neuro didn’t do both pieces of the test.

      Does this sound like anything anyone else has gone through? I’ve considered bringing this up to her at my appointment when we have the EMG on Friday.

      Thanks in advance for reading. I know this was a novel but I had to start somewhere

    • GH
      March 14, 2018 at 2:23 pm

      Neuropathies are difficult to diagnose. Stick with the neurologist who wants to do a more thorough test, and keep a close watch on your strength. CIDP will manifest itself as a loss of strength, usually from the lower extremeties upward. B12 won’t hurt anything and may help.

      My advice is to stay away from “integrative” medicine. This just the latest quack buzzword. It is about integrating quackery with medicine. Quacks used to call it “alternative” medicine, then “complementary,” but they have become more adept at infiltrating the medical profession by adopting new vocabulary which sounds more legitimate.

      • amysplawn
        March 14, 2018 at 2:54 pm

        Thanks for your feedback. Yes, I am somewhat skeptical of integrative doctors as well. Although, they did seem to be the right fit for my step mom who was diagnosed with Fibromyalgia. The only bit of information they told me that was interesting is that I had high levels of Tin in my red blood cells. That did come up on the lab work but then they wanted me to do more testing which is just more $$$ that I don’t have when I am actually trying to figure out what the heck is wrong with me. I’m 37 BTW and it just feels really odd to be struck down with neuropathy at such a young age. And considering it’s more than just some pins and needles, I keep wondering if this is autoimmune. My ANA was done right when I first had the symptoms but it came back negative. My sed rate was on the high end of normal but other than that my blood work is fine. I just can’t figure out what’s going on with me. Weird sensations, symmetrical joint pain, muscle fatigue. I’m not at the point where I am dropping things or cannot walk but I certainly don’t feel like the strong 37 year old I was back in December. I think I may ask the neurologist to schedule a small fiber neuropathy test as well. I also have an appointment with an esteemed Rheumatologist. Just trying to make my rounds to figure out what’s going on. What has me really stumped though is that the steroids they gave me for a few days was like a miracle drug and I felt like my old self again so there’s got to be some type of inflammatory response going on inside of me….

    • B
      March 14, 2018 at 11:21 pm

      Was the MRI performed with and without contrast? Has anyone suggested a lumbar puncture (spinal tap)? That is typically performed during the diagnosis process for CIDP. Another test is a skin punch biopsy. Was your NCS performed on all 4 limbs? Will the next one be?

      Are you aware that this Foundation has identified Centers of Excellence with doctors who have shown an interest and competence in CIDP? Is it possible for you to be seen by one of these physicians?

      Your positive response to steroids seems to warrant further investigation to see if more is helpful. It may or may not be something you wish to be on long term, but it can be helpful as a treatment and also in diagnosis.

      • amysplawn
        March 15, 2018 at 9:15 am

        No MRI with contrast was done. Only without. I only had the brain and cervical done and the only thing that came up was degeneration on C4-6 (minor stenosis). My new neuro did suggest a skin biopsy to rule out SFN (small fiber neuropathy). She is only performing the EMG/NCV test on my left leg and left arm. I plan on telling her that my symptoms have increased since our last visit (roughly 8 days ago). I was not aware that this site has a Centers of Excellence for specific doctors who focus on this condition but I will most certainly check that out. I am with a neuromuscular neurologist at Emory named Vita Kesner. She did do a very thorough evaluation. My next test is tomorrow, 3/16. None of the doctors have suggested a spinal tap yet but that is another question I will have for her. I am certainly willing to pay for it. Considering this has been going on for two months now and doesn’t seem to be easing up, I certainly feel like something is going on.

        Much like you just said, the fact that I responded beautifully to the steroids is another reason why I cannot help but think/wonder that there is some type of serious inflammatory condition going on. But I guess I am stumping my doctors because they equate autoimmune to high sed rates and high C reactive numbers and mine have been in normal range. I even had an ANA done (albeit only about 14 days after symptoms’ started). Any additional advice/insight you have would be greatly appreciated. I would certainly say, I’d love to be on the steroid right now but I think doctors tend to think they are too dangerous but my quality of life is diminishing exponentially

        I should probably add that when the initial neuro eval was done, I kept trying to tell them, I do not feel like I am numb. This is not pins and needles (although as of recently I am feeling some of this and some weird burning sensations in my hands…this has literally developed in the last week). She kept poking me with a little stick to see if I felt things the same all on my legs, arms hands and feet. I could feel everything relatively well but the “sensations” which feel like buzzing/crawling/low current of electricity running through me were still going on. These sensations do not affect my ability to not feel things.

        I basically feel like these neurologists have no idea what I am talking about but it’s funny because I have read so many places people describing exactly what I am feeling. Also, I should add that the sensations were localized to a “stocking and glove” distribution but I am now feeling them move upwards so into my thighs and now upper arms. It’s a slow progression but I feel it happening

    • B
      March 15, 2018 at 10:57 pm

      The reason I understand that contrast is used for a brain and spinal MRI is to look for MS lesions. Here is what the MS society says on the topic:

      “A contrast agent containing gadolinium is often injected into the vein before an individual undergoes an MRI scan. Gadolinium is used to identify areas of active inflammation that can be associated with MS. ”

      I too had some disc degeneration and was originally treated for disc issues before the problems became more widespread and full body neuro. But once I was with a neurologist and had a CIDP diagnosis, the neuro said that the disc issues were not nearly severe enough to cause the nerve issues I was having.

      It seems that that EMG/NCS could be done on all limbs. My first one was legs only, my second one three limbs. I wish it had been all, especially for insurance authorization purposes. Many insurance companies are looking for issues in a certain number of limbs and incomplete tests don’t help this (for IVIG approval). Also, CIDP is usually considered bilateral, but variants can be asymmetric and knowing what you’re dealing with would be helpful, in my opinion.

      A spinal tap can’t lead to a definite diagnosis for CIDP, but elevated proteins can contribute to a diagnosis. But 20% of CIDP patients have normal levels. The spinal tap is helpful to rule out other things too, since the CIDP diagnosis is largely one of ruling out other causes.

      My neuro didn’t even run CRP and doesn’t use it at all in my case. We run it occasionally at my request.

      My neuro has never put me on steroids and has been very against them in my case. Even though IVIG is more costly (both financial cost and time intensive), he feels IVIG is a more appropriate treatment for me than steroids. He thinks it’s safer and has less serious side effects than steroids. But steroids are cheaper and more accessible and many people do very well with them. There is one man on one of the facebook groups who’s always pointing out that he’s almost symptom-free on steroids, no IVIG.

      Totally agree about the weird sensations. I’ve had cobweb feeling, diminished sensation and the “sensation of sensation” if that makes sense. Their tests that search out complete numbness don’t really identify all of this other weird stuff going on. I try to ignore these minor sensory issues. I’m more concerned when I have weakness or when lack of sensation is affecting balance, walking, uneven surfaces, etc. I’ve even gotten to the point that my legs go numb during exercise, but if it’s not affecting balance I just kind of ignore it. It’s strange, but the motor nerves seem to be able to do their thing even if the sensory nerves are out to lunch. I just trust muscle memory, and know that if I ever fall that I need to re-evaluate. I realize that for many people this isn’t an option and their numbness is much more disabling.

    • EllenW
      March 16, 2018 at 10:36 pm

      Hello, Amysplawn.
      I was diagnosed with CIDP Nov. 2017 because I finally had a spinal tap.
      January 2016, I had EMG testing and my Emory St. Joseph neurologist suggested a spinal tap as another diagnostic tool, but I chose to wait because the symptoms were only in my feet and legs and it seemed I had PN, a non-treatable condition. Because I put off the spinal tap, I experienced more nerve damage and many more life-altering symptoms.
      January I began IVIG, and am now experiencing some improvement.
      I wish you well in finding a diagnosis.

    • amysplawn
      March 19, 2018 at 12:06 pm

      Hello, thank you for the responses. An update here for you. I had my NCV test and EMG done on my left side (hand and left leg). This is the second NCV test done. The first was done on my left leg, right leg and right hand. The NCV test done this time around was a lot different. They had me soak my hands and feet in a warm bath which my first neuro didn’t do. When I asked the technician about this, she said it is BY THE BOOK and the only way it should ever be done because if your limbs are cold, sometimes it will cause your nerves conduction tests to give false information.

      So the NCV test on the left side this go round was within range. Nothing fancy to report. Perfectly normal according to the doctor. The EMG portion on the left side was totally normal as well according to the doctor. I asked her is there anything else this could be because for two months now I have felt like total crap. Strange sensations, fatigue, major joint stiffness in hands and knees, unexplained groin pain, etc…

      She said from a pathology standpoint there was nothing more she could do. She obviously did not see a reason to do a spinal tap because nothing alarming came up on the NCV/EMG or during her evaluation.

      I don’t know what more to do. As I sit here and type this, my hands feel like they are on fire yet “pathologically there is no story to tell.” At the initial visit, she had talked about small fiber neuropathy but that wasn’t discussed at the second visit.

      I am so tired of feeling so terrible. This AM someone shook my hand and it felt like they were crushing my bones. Yet again, I’ve had an ANA panel done (although it was very early in the symptom phase) and I’ve had my sed rate checked and C reactive. Again, so confusing there because One week my C reactive was 2.0 and the sed rate was 22 and then the next week I had it done at the neuro’s office and my C reactive was .2 and my sed rate was 2.0. How my inflammation could be that different in five days time is beyond me.

      The main symptoms I am currently feeling aside from the sensations is bilateral pain in both hands.

      Again – the only thing, and I mean the ONLY thing that has helped me is the steroids. When I told the neuro this, she said, “of course, they make everyone feel better.”

      Hmmmm….

      I’d guess if I wasn’t having pain before I was on them, they wouldn’t have really done anything for me. I don’t know why I cannot get any of these neuros to consider that if the steroid helped TREMENDOUSLY, there has to be something going on in my body.

      🙁

    • DJMACD
      July 4, 2018 at 4:39 pm

      Hey I was diagnosed 2002. I used to workout 5 days a week. I started to get tired. My dr said get some sleep. I wasn’t tired mentally and slept normally. A couple of months later my left arm started tingling. Didn’t think anything of it. A month later approximately I started losing feelings in my arm. Mentioned it to my dr. It’s nothing he said. Then I started to knock things over like my coffee cup because my arms weren’t as strong as before. Went to the dr. He checked my reflexes and I didn’t have any. He agreed to send me to a neurologist, appointment was in 3 months. At work I started tripping over stuff that I didn’t usually. So I started to workout more to get my strength up. After a workout I had to roll over to the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him abto the wall to get up. Still let it go. This is after my last dr visit. Then when I was shaving my vision doubled. I thought I am to close to the mirror. A week later I had permanent double vision, and I couldn’t get up steps. At the time I was seeing a neurologist for my migraines. So I lied and went to see him under false pretences. After he finished I asked him about my vision and he said get on the table,which I had a hard time doing seeing as by that point I could not walk very well. He checked my strength and my reflexes and asked how long. I told him that it started about 6 months earlier. Told him about strength tripping balance no feelings. He said mg. I can’t spell it,brain fog. He used to teach specialists. I got an appointment the following day. If I would have waited for 2 months I would be in a wheelchair permanently. I got spinal tap muscle nerve test and diagnosed cidp. I drove for a living. I didn’t have any ms symptoms, but I do now. I took a lot of prednisone and ivig five hours a day five days a week. Point being there are so many different symptoms and like my dr said “what are the odds “. You need a ms cidp specialist right away. I’m okay now, still dealing with other issues from other meds prescribed. The sooner the better,make waves.

    • DJMACD
      July 4, 2018 at 4:40 pm

      Sorry about that I didn’t want all that written so sorry