Long Newcomer Story/Guidance Needed

    • March 20, 2018 at 7:14 pm

      Hello from TX,

      I’m Sophie. I was diagnosed a few weeks ago with GBS/AIDP at UT Southwestern. I’m healthy, mid 30s, mom of young kids and work full time in corporate law. Illness was rapid onset as follows: upper respiratory infections off and on throughout Jan and Feb, including 2 strains of flu and mild pneumonia. Recovered and felt fine for 4 days, then out of nowhere both feet fell asleep w/ pins and needles during a meeting. Within 30 minutes the sensation covered both legs entirely. Muscles began to ache, and the muscle ache became unbearable within 3 hours. 3.5 hours after onset of tingling, could no longer bear weight on legs due to weakness. Took ibuprofen, went to bed, got up and was a tad better. Could stand and walk slowly, but muscle aches were still horrible.

      Went to GP, and long story short I spent a week inpatient at UTSW on the neuro floor. Got MRI with and without contrast, CT, ECG, EMG, blood gases, lumbar puncture, etc. The only tests that showed anything even slightly abnormal were the MRI (which showed subtle enhancement related to the ventral nerve roots at the level of L1) and Antinuclear ABS was positive, 1:160 (mild) homogenous. Potassium is always just below normal limit, even when on IV potassium supplement, which is just an odd side note.

      Everything progressed rather rapidly, and respiratory was watching like a hawk. Blurred vision, intermittent double vision, and bright flashing lights in peripheral view started, but doctors were unconcerned by that. I started to lose swallow function but wasn’t fully aspirating. The leg pain was unbearable, but instead of giving any relief, the attending (who specializes in Epilepsy) argued that I shouldn’t be in any pain from GBS, since it’s a disease of weakness, then suggested I was probably seeking narcotics. They started plasmapheresis very quickly. I continued to deteriorate after the 1st plasmapheresis treatment, and hit rock bottom just before the 2nd treatment was started. There was marked improvement after 2nd plasmapheresis. In the morning I could barely lift my head or swallow without colossal effort, and by evening I was on my feet with a walker. More improvement after 3rd plasmapheresis – could walk slowly without walker and swallow was stronger, but I was still very long way from normal.

      Dr decides suddenly that I improved so much he was releasing me and cancelling the 2 remaining PLEX treatments. PLEX tech, nurse, and patient care tech all told me candidly that they thought that was absolutely insane, and that I was nowhere near ready to go home. Not wanting to argue with “the expert,” I was fine with being discharged. Dr said likelihood of regression or relapse was basically nonexistent, and I’d continue to get better on my own.

      Rested just over a week at home and was doing ok. Sick visitor gave me his germs and I was down with a stomach virus, and the first day I felt better from that the pins and needles in my feet were back. In similar progression as last time, though slightly slower, the tingling has progressed to numbness and painful aches. Blurred vision and bright flashing lights have returned along with intermittent double vision worse than before.

      Saw GP, who sent me back to UTSW ER. ER doc was worried, respiratory spent hours with me b/c I was failing all their “blow/suck” tests again, and both said I’d likely be admitted. They called in one of the residents who had seen me while admitted, and she did full eval, I had no sensation whatsoever on the pin prick tests and missed all the hand eye coordination and “how many fingers am I holding up” tests. It was pathetic. However, she tested my reflexes (which never, ever subsided from the start–in fact they got stronger than usual), and enthusiastically exclaimed that I still have ankle reflexes, so I’m fine. Say what?? I reminded her that my ankle reflexes were always there from the start and had never decreased. She said they shouldn’t be working now since it’s been more than two weeks from original onset, so that means this must not be GBS. I asked whether 3 PLEX treatments could impact that, and she shrugged. I said, “so what you’re saying is this wasn’t GBS at all and PLEX was unnecessary and wasted effort?” She shrugged again and said “sometimes viruses do weird things to your body.” I said “like make people paralyzed?!” She said yes and left.

      So I was sent home, barely able to walk, a diaphragm so weak respiratory was worried BiPap may be needed, and vision issues. And possibly the wrong diagnosis from the start…awesome.

      They told me to schedule a neurology follow up ASAP, and the earliest I can get in is in 3 weeks. I found a doc at another hospital who can see me in 1 week so I set that up as well. Meanwhile, I’m getting worse. I can barely move today. Getting out of bed for any reason is a colossal effort, so this impacts every part of my life from career to parenting to eating/basic living.

      I’m not sure whether it was a misdiagnosis, or whether this is the same thing (it sure feels like it), but what I do know is that plasmapheresis was a game changer, whatever the issue is/was, and they stopped after only 3 of the 5 scheduled treatments.

      Does any of this resonate with anyone? Any advice? Thanks in advance!

    • jk
      March 21, 2018 at 5:00 pm

      Is UTSW where you went this center of excellence?

      UT Southwestern Medical Center
      5323 Harry Hines Blvd.
      Dallas, TX 75390

      Yes, or no it’s often been stated on this website that peripheral neuropathies are difficult to diagnose. Your report of “…slightly abnormal were the MRI (which showed subtle enhancement related to the ventral nerve roots at the level of L1)…” reminded me of another post a few weeks back.

      Recalling, here it is- “MRI allows identification of enlarged nerves in hypertrophic polyradiculopathies.” Not to pretend to be diagnosing merely comparing similar wording from the posts of two patients with difficult diagnosis.

      If UTSW has left you wanting, try-

      University of Texas Health Science Center at Houston
      UT Physicians Neurology Clinic
      6410 Fannin Suite 1014
      Houston, TX 77030

      It is not unusual for spinal taps to initially come back normal. It is unusual to have feedback on an EMG without also having Nerve Conduction Velocity tests.

      Oh. Advice. Yes, get a substantiated diagnosis and ask about the benefit of IVIG.

      Good luck.

    • March 22, 2018 at 3:23 am

      I’m from Texas as well. Gbs is very difficult to deal with. I was diagnosed in 2016 but it took almost 2 months to get diagnosed. I started with numbness and weakness stated in my feet and traveled up my body. Within 3 weeks I was paralyzed. I kept going to Er and they kept sending me home telling me it was my imagination. I was imagining I was losing my legs really! When I lost my legs they admited me to hospital they still didn’t figure out what was wrong they kept me for 3 days then sent me to a nursing home the doctor said he didn’t know what was wrong and he wasn’t going to look for what was wrong. I ended up back in Er a week later. They finely did a spinal tap and that was when they diagnosed me with GBS. I was Intensive Care for 3 days and in hospital for almost 2 weeks. When I came home I was in a wheel chair and I couldn’t even turn over in bed by myself or pull myself up. That was in June of 2016. The numbness has gone all but my feet. And now I am diagnosed with CIPD. And I take IVG treatments every 4 weeks. Had to have a port put in due to my veins wont handle the iv’s I kept blowing out veins. But I am walking now with the use of a cane when I get out. And without one inside my home. I even drive myself to town. I don’t have anyone to drive me any more so I don’t have much choice. My feet are always numb some days i cant feel my toes at all which gets real scary for me. And my feet are always heavy and feel like a tight band around them. I have nerve pain in my toes. I have a lot of muscle weakness. I have good and bad days. I don’t know if any of this helps you at all. You need a doctor that is experienced in treating GBS. I’ve got to change doctors myself and it looks like I’m going to have to go to Dallas which is a little of a drive for me. Not sure if I can drive that far with my feet.

    • jk
      March 22, 2018 at 5:11 pm


      Become the little engine that could. (from a children’s story)

      If you find you just can’t do it, find a friend, a neighbor, a new friend, or a relative. Approach every task with the notion that for now, all of life is little-by-little.

      good luck.

    • March 23, 2018 at 12:49 am

      Symptoms, MRIs, LP, NCV and EMG gave me a CIDP Dx after my issues went beyond 4 weeks. Find a neurologist with neuromuscular/neuropathy background!

      IVIG got me going again initially after treatment #3 of loading dose (still taking every 2 weeks) but hasnt been as effective lately and PE has been added as a treatment when I relapse hard. 5 x (every other day) each treatment cycle and I see improvement on #3-4.

      All the best to you

    • March 26, 2018 at 3:34 pm

      Thank you all so much for your replies. I was readmitted to the hospital (same UTSW that’s listed in the center of excellence list here) from Wednesday-Saturday. By Wednesday I could barely feel my legs at all, was short of breath, and had fallen 3x, one of which resulted in banging my head against a tile wall. They were pretty adamant that this was not the AIDP flaring back up from three weeks prior; rather, they felt this set of symptoms was all in my head. They started taking me more seriously after PT confirmed that I could not, in fact, use my legs, and when with little warning I suddenly got violently ill, sustained high HR, high BP, and low O2 sat. They ended up adding to the diagnosis, so it’s now AIDP and SIRS (severe systemic inflammatory response syndrome).

      I followed up this morning with a more conveniently located neurologist affiliated with Baylor who works with AIDP and CIDP patients and she was so wonderful and reassuring. I’ll continue to learn more on this forum and appreciate that this support mechanism is here.

    • April 9, 2018 at 1:43 am

      I am a US citizen living in India. Two weeks I was diagnosed with the Lewis-Sumner subtype of CIDP. My original two diagnoses, however, were Leprosy, aka Hansen’s Disease. It has been a very circuitous three months for me.

      I see a neurologist regularly for Cluster Headache Syndrome, and in February I mentioned to him that in December the tip of the fourth finger on my left hand had become numb and tingling. He told me to observe it for any changes, but that likely it would resolve on its own. Three weeks later the third and fourth fingers were numb and increasingly immobile, with the left palm also affected. Then it started with the right foot.

      I returned to my neurologist, and he asked, “How long have you been in India? Don’t be alarmed, but when these symptoms are present in an Indian patient, Leprosy is always an initial consideration.”

      To make a long story short, two doctors confirmed it was Leprosy, and I was placed on the full regiment of Leprosy medications. The skin biopsy was returned as negative, but apparently this is routine, as biopsy of the ulnar nerve is the only valid indication of infection. The rule is that when you present these symptoms, the course of action is to immediately treat as a potential case of leprosy.

      Intuitively, something didn’t seem right to me. A colleague directed me to a particular neurologist who had saved his life, and within five minutes of this doctor reviewing my file, he exclaimed, “This isn’t Hansen’s! You don’t have conduction blocks in Hansen’s!”

      Fast forward through a long hospital stay and numerous tests, I finally received the CIDP/LS diagnosis. Had I not followed my instincts in getting a third opinion from a neurologist, I would have spent the next year on Leprosy medications rather than being on the proper course of treatment. The diagnosis has allowed me to place closure on this episode and move forward in battling and recovering. Alongside, I have gained empathy with the plight of Leprosy patients, as I was one for a month…albeit it an incorrect diagnosis.

    • July 4, 2018 at 3:56 am

      Very similar experiences with GBS. I was finally diagnosed in August 2017. I had a CAT scan & two MRI’s. My second MRI was 2 hours long! The first time I went to the hospital they sent me home. Three days later I had to go back in the hospital. I stayed for a week or so. Then I was sent to a nursing home. My neurologist said my vision problems are not due to my GBS. I’m going to a ophthalmologist next week. I broke my right ankle in three places & had to have surgery. MY 40th birthday was June 22ND & I broke my foot in two places. The ER sent a prescription for painkillers & the pharmacist called to yell at me. I never asked for them to fill a prescription for more painkillers. I take CBD’s & wait 30 minutes before taking a painkiller.
      This is my first time on a blog. Hope I’m doing it right?