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Living with Polyneuropathy CIDP, GBS, & CMT

Newbie looking for guidance


#1

Hi, I’m a new member that is struggling to understand my current condition and looking for guidance in this new journey that is in front of me.

I recently went thru a life changing episode that started with something as simple as widespread muscle cramps and an unwell feeling in the morning that quickly escalated into a feeling that that we better get to the hospital soon. By the time we arrived at the ER 15 min later I was barely able to walk and they rushed me into evaluation room a couple minutes later and I could barely sit up in a chair. They took me in a wheelchair to to an ER room and then I could barely crawl into the hospital bed. Then they pulled some blood work and and by the time they asked me for a urine sample I was barely able to lift my arm to pickup the urinal.

By that time all of my muscles had started shacking in what I can only relate to something similar to a seizure. By the time the seize stuff slowed down I noticed that I couldn’t move my legs and I could barely lift my arms off the bed.

That progressed until I could barely open my eyes and my speech and breathing took great effort and the ER doctor gave me a high dose shot of prednisone that finally stopped the progression.

A couple hours later I started feeling pins & needles in my feet and then eventually I was able to move my feet slightly and eventually regained full movement a couple hours later.

When I was well enough to do some tests, the ER doc sent me thru a 2-3 hour MRI of my entire spine and said he suspected GBS. But the tests came back “Normal” and by the time I had recovered enough to walk around that night at the ER they decided to send me home with an unknown paralysis and general weakness diagnosis.

The episode really freaked me out and I’m wondering if the suspected GBS possibility is something I should reasonably pursue and also if the onset and remission timeline in my situation would fit within the scope of a GBS or CIDP episode?

I found a Polyneuropathy specialist in the next closest city but I didn’t wan’t to waste their time if this doesn’t seem to fit within the criteria.

Just for some background info to consider… I’m a 40 yr old male with two C-Spine fusions over the last 10 years and have currently been recommended for a fully hip replacement for both hips but otherwise I’m described as the football player type?


#2

Good luck to you. See the specialist and let them figure out what you have. I have CIDP an receive IVIG. Take action.


#3

So sorry for you life changing episode, and praises for your recovery to date. The rapid onset would not be indicative of CIDP, more like rapid onset of GBS. I have CIDP with slow, steady onset. Treated for 3 years of weekly IG and 1 year of weekly Steroids. Now in remission but with all residual pain in feet and legs below the knee.
I would continue to see doctors even if you have to travel across states to see a recognized GBS specialist. Neurologist is a must!
Reply back any questions. Bless you and Heal you! Bill Scott


#4

My situation was similar to yours. I was training for a 1/2 marathon, I ran 10 miles on a Sat, squated 140lbs 30x on Sun and by that Thurs I shuffled myself into the hospital and was put in a wheel chair and then couldn’t get out of it, couldn’t stand or walk.
I made multiple phone calls (fortunately my daughter had a doctorate in Chem from Univ of Mich. and met some wonderful medical drs along the way). I was given many diagnoses (ALS, MS, GBS…) I learned about a procedure that was used for GBS similar to IVIG called plasmapheresis. I asked the neurologist on staff at the hospital if I went through a plasmapheresis and didn’t need it would it hurt me. He said, no. So I said, let’s do it and I could walk again after the third treatment.
I have had two relapses since and Plasma treatments thru Sept. still recovering but able to walk and do normal household chores, but w much fatigue at times.

You have to follow up bc early diagnosis is so important. Remember I pursued my Plasma treatment the first I was in the hospital. I asked the neuro what his plan was if I didn’t do the treatment. He said he would send me home and see me in his office in about 4 days. I thot, WHAT?
I know now I would have regressed until I wouldn’t be able to breath. One of my daughters dr friends got me out of that hospital ASAP.
I have read 100s of these posts and yours is the first in I have read where prednisone was all that was needed. So definaley follow up and keep a close eye on your coordination, balance and numbness.


#5

Thanks all! I appreciate the optimism and encouragement!

I’m planning to make an appointment with a specialist soon because my regular physician kinda shrugged it off during my followup and said we’ll look into it if it happens again. I can almost guarantee they wouldn’t wait for it again, if it happened to them.

After reading about many disorders like this, I’m still not sure how I bounced back so quickly. I had told the nurse not to give me any pain medicine because I felt like I needed to fight whatever was happening to me and I didn’t want to fall asleep. Strong prayers along the way too!

I’m just looking to make the most of my second chance. Thank you all for the info and encouragement!


#6

Apyper65, thanks for your post. You gave me so much perspective about what is in front of me. I appreciate it!
I hope you’re feeling better now!


#7

Hi socny, I can relate in that much of my lab work and MRI came back normal initially and I was sent home. Eventually, I saw a neurologist experienced with GBS who determined I had Miller Fisher Syndrome.

The sooner you get checked out the better. If something is off, it’s more likely to show up now than later. It took me awhile to get seen and then to see the right person; made it tougher to get a diagnosis.

Just wondered if you still have any symptoms?


#8

Thank you Tarhealing, I was thinking the same thing about having the tests done soon when the results might give a clearer picture about what happened.

I tried to schedule with a Polyneuropathist today but they require a referral from my Physician. I guess I’ll have to followup and work thru the Politics.

I still have symptoms. my lower back still hurts and it started during the paralysis. Hasn’t gone away and never had this problem before. Plus the weakness in my arms and legs is still bothering me… still having to pull myself up the stairs. Just thankful things have regressed as much as they have in the meantime. Hopefully it gets better with time.


#9

Still trying to get that appointment with the Polyneuropathist. My primary finally submitted the referral after the symptoms continued.

But now my Neurologist appointment is held up because the office manager for the Neuro is “reviewing it”. It’s been over a month and still no word about an appointment. Now I’m skeptical about even going to this place for evaluation.

Is this typical? Anyone else have experience about how to handle it?


#10

Hi Scony – I’m in the USA as well and I would say what’s happening to you is not typical of health care here. I’ve actually worked in the the health insurance/prescription management industry for 25+ years so I have some suggestions for you, assuming you’re using insurance:

  1. call your medical provider, find out if you NEED a referral to a neuro there is a member services number on the back of your medical card

  2. if you do not (most do not) do some leg work of your own, you should be able to get a list of neuros on your plans web site so you’ll know they’re in network, check their profiles and start calling to make your own appointment

  3. some specialist do require a referral, but that’s a practice rule, usually not an insurance rule (see point 2) don’t argue with them, just move on to the next office

  4. if you feel more comfortable staying with the place you’ve been referred to I would get on the phone with your GP and find out why they referred to that office in the first place (I once had a doctor’s office tell me they don’t make referrals exactly, they just go down the list of specialist until they find one with an opening, they knew nothing about them)… if you’re okay with the reasons get on the phone to the specialist and get the reasons why the office manager is reviewing anything and does the office manger have medical training to make decisions about your case? if not, be highly annoyed is my suggestion

  5. why did your GP wait so long to refer you out? that would annoy me immediately, I don’t believe in “we’ll deal with it if it happens again” attitude at all… you may want to take a long look at that provider

Good luck! Let me know if you need help navigating all of this.

azurelle


#11

Thank you azurelle. You’re right and I need to be more persistent to get things moving.
Things are starting to move in that direction now and I finally have an appointment next month.