Are my symptons CIDP related or other

Viewing 12 reply threads
  • Author
    Posts
    • #117602
      Richard Robinson
      Participant

      Good Afternoon,

      I am a 33yr old male. Within the last several months , I’d day starting in October, I would randomly stumble and or fall. My falling used to be just a straight drop from standing to one knee on the ground. The falling started with one knee/leg as the primary, but progressed to both of my knees/legs. In the last 6 weeks, I have developed tingling in both my feet. The falling has gotten worse. When I fall now, it has more forward motion and I have to catch myself on either near by objects or catch myself with my hands on the ground. My arms/hands do not seem to have any issues. One of the other things that is strange, there is absolutely no pain or warning involved with the actually fall itself. The only pain that is associated with this is when I fall alot in a day or twist my knee in a weird way when falling. Not sure if it related or not, but my deep tendon reflexes are severely diminished.

      Also, A few weeks ago I got into some Poison Ivy. I react pretty strongly, so I was given a shot of low dose steroids. For the next few days after that shot, my walk was near perfect. I had very little issues. After the shot started wearing off the falling started coming back.

      So far my doctors have done an MRI which revealed disc compression in the lower lumbar area.
      An xray of my knees, which came back absolutely normal
      A Nerve Conduction Study/EMG, which found a sensory nerve with a decreased response and motor nerve in my foot that was basically dead. After this study was finished, the neurologist ordered a Spinal Tap, which is being done next week.
      Several rounds of blood work, with everything in “normal” ranges.

      They have ruled out ALS, but I am still in limbo as to what is wrong with me. I know this is a vague and very high level overview of my issues, but I was hoping someone might have experienced something similar to this and have some insight

    • #117606
      Roy Roark
      Participant

      I can not say if your symptoms are CIDP but they are similar to the symptoms that eventually led to my diagnosis of CIDP. I pray for the best for you whatever your final diagnosis.

    • #117607
      Richard Robinson
      Participant

      Thank you for replying. If I may ask a few questions:

      Did you ever develop a dip or fairly consistent partial knee give out? I’ve noticed that I have a dip in my walk. My knee like slightly gives out/quits working/whatever you want to call it.

      Thanks- hope you are safe in this pandemic.

    • #117609
      Roy Roark
      Participant

      Yes I did. I am glad to hear you are getting tested for CIDP so quick, it took them around 10 years before I was even tested. It was after I had been in a wheelchair for 2 years. If it is CIDP and they catch it quick the prognosis is good. I am no longer in the wheelchair even with my late diagnosis. Prayers for health and safety.

    • #117640
      Maylo
      Participant

      Hi Richard

      It sounds like CIDP, since it can progress very slowly too.
      From my personal experience what you can test yourself is:

      – Behaviour of your conentration / momvement / balance when exposed to a lot exterior impressions
      like for example in a crowded spot. Since CIDP surpresses the response of the nerves, it might cause problems when you get a “data overflow” because the brain can’t handle the automatic “tasks” anymore.

      – Fast movements like for example jumping up or running.
      The fast movements require more concentration. Like described before, if your nerves are really surpressed, you will feel like a moment of being disconnected from your legs, because the information of your legs position where it is, can’t be given in the required time back to the brain.

      Nevertheless, a liquor testing will give evidence whether it is CIDP or not.
      It’s the only almost 100% evidence you can have, if the protein level in the liquor is increased.
      Yes, it is not a nice to do test but the better you know your enemy, the better you can fight it.

      That is all based on my personal experience with GBS / CIDP.
      Feel free to ask if you got further questions.

    • #117652
      Richard Robinson
      Participant

      Hey,

      Thanks for the reply. I will have try and take note of my reactions in those situations.

      My doctor updated my patient portal two days ago with a diagnosis of Myelopathy. I haven’t had a chance to talk with her yet, but I have a thoracic and cerival mri scheduled for next Friday.

      After she gets those results, she wants to have a face to face to go over everything and I guess explain it all.

      Did you/anyone else ever have another issue like myelopathy that was a symptom of Cidp?

    • #117653
      Richard Robinson
      Participant

      Hey,

      Thanks for the reply. I will have try and take note of my reactions in those situations.

      My doctor updated my patient portal two days ago with a diagnosis of Myelopathy. I haven’t had a chance to talk with her yet, but I have a thoracic and cerival mri scheduled for next Friday.

      After she gets those results, she wants to have a face to face to go over everything and I guess explain it all.

      Did you/anyone else ever have another issue like myelopathy that was a symptom of Cidp?

    • #117654
      Maylo
      Participant

      Hi Richard

      Happy to hear it’s going on.
      Unfortunatelly I can’t tell you anything about Myelopathy.
      Best is to ask your doctor or to link directly with a neurologist.

    • #117655
      Ausvoltz
      Participant

      Myelopathy is an injury to the spinal cord due to severe compression that may result from trauma, congenital stenosis, degenerative disease or disc herniation. The spinal cord is a group of nerves housed inside the spine that runs almost its entire length. When any portion of the spinal cord becomes compressed or constricted, the resulting symptoms are known as myelopathy.

    • #117667
      Richard Robinson
      Participant

      Good evening,

      An update from my last post. Two mris were ordered, thoracic and Cervical. The doctor called me today and said the mris did not show anything that stood out. Then she went on to say that some of my blood work was slightly abnormal which was in line with autoimmune/upper motor neuron neuropathy. They want to start me on IVIG to see if it helps.

      Since this all started I’ve read a decent bit about IVIG, but was curious how long it could take before positive results could be seen? I’ve seen some post say it was immediate others say months- etc.

      Still no confirmed diagnosis, but at least getting some treatment may help with the falling/dipping/tingling legs.

      Thanks for all the support and encouragement. Hope everyone is staying safe and well out there.

    • #117668
      Jim-LA
      Moderator

      I hope IVIg works for you. IVIg attempts to stop your autoimmune system from producing more antibodies (‘T’ cells) that can attack “self”. It won’t do anything for the ‘T’ cells already released into your body. Depending on the volume already in your body, positive results could come fairly soon or take some time, if it works at all for you.

      IVIg alone does not always work for everyone, it didn’t help me a bit and I got worse while on it. If there is no improvement in a week or two you should try another treatment like Plasma Exchange or Corticosteroids.

    • #117682
      Richard Robinson
      Participant

      Good Day,

      Just a follow up on the thread since I started. I finally had another appointment with my doctor. We went over all test results from my spinal tap. The only thing was my CSF protein was slightly elevated around 67, normal range (at least online) is between 40-60. So not sure if that is a strong enough indicator or not. She ordered an EEG, which came back normal, and tested by Type 1 Diabetes. That came back negative, She ordered a Brain MRI and drew blood to check my IGa levels.

      She wants to start me on IVIG to see if my symptoms improve, and narrow down my condition to Autoimmune or other. My IVIG starting dose is 0.4grams/kg daily X 5 days. So I figure around 250 grams over the week. Not sure where that lies in terms of large or normal starting doses.

      She also referred me to an ENT to make sure my symptoms were not being caused by Meniere’s Disease. I have that appointment this coming week. In my last appointment, she ruled out MS and ALS, which was good to hear, but she isnt sure what is causing my issues.

      Again thanks to everyone who has commented and hope every one is staying safe!

    • #117683
      Maylo
      Participant

      250grams is what Ingot on a weight of 100kg.
      IVIG reaches its full potential after up to 2 weeks so a little patience is needed.

      I agree to Jim that IVIG’s not always THE solution but in regard to other solutions, I’ll take the plasma exchange as the last option, since it is a whole procedure and also very intense for the body.
      Corticosteroids or even Immunsupressiva could be the way to go or even a combination.

      Keep us posted and wishing you success with the IVIG treatment.

Viewing 12 reply threads
  • You must be logged in to reply to this topic.