January 12, 2018 at 1:08 am #113758
I was diagnosed with GBS Dec2 and started on IVIG 5 d in hospital.
I had sensory symptoms since first week Oct, got my flu 2 wk after the sensory symptoms began[ I did not know then that I was having nerve pain]. I developed left foot weakness end of Oct[ noted by physiatrist] and right foot weakness was noted end of Nov[ noted by neuro surgeon], 2 d after Neuro surgery appt, my leg weakness deteriorated significantly. This led to hospitalization for presumed GBS. No LP done.
1 week post IVIG , my neurologist did EMG/NCV, said no signs of demyelination, bilat axonal damage of only one nerve so unlikely cipd and most likely GBS with proximal nerve demyelination since my reflexes and strength improved post IVIG. She noted left hand weakness. This developed after receiving the IVIG.
I am now 1 mo post IVIG and this week started having acute shortness of breath with walking and talking. My fatigue has gotten worse in the last 2 weeks. My legs are Ok, I am able to walk, my hands still weak. I have written my neurologist and she will not respond.
Has this happened to anyone? that they have shortness of breath after ivig…Can this be due to acute nerve injury to respiratory muscles? or is this fatigue?
Is this continued progression of my illness?
I have an appt at the tertiary hospital Feb 2 with a neuromuscular specialist, do I wait for that? do I go to the ER? I am trying to avoid an er visit since I have been twice in last 2 mo…
Thanks for all you input
January 20, 2018 at 11:12 pm #113787BParticipant
I hope that you were able to figure this out. I haven’t heard of IVIG causing breathing problems, but CIDP/GBS can. For me, my breathing is sometimes affected, but more of a sensation of lack of breath vs. actual lack of breath (pulsox is usually in normal range). I would call your neuro of there is no response to email. Do you have any future IVIG treatments scheduled after the 5-day loading dose? If you’re having trouble breathing and neuro (or PCP) won’t respond, I’d go to ER.
February 10, 2018 at 12:32 pm #113878
I am doing better.
Not sure what caused it.
Since then I saw a another neuro for a second opinion and was told I had Transverse myelitis and not GBS.
February 10, 2018 at 3:54 pm #113881GHParticipant
Diagnosis of neuropathies is often difficult. Will you stick with the 2nd neurologist for now?
February 10, 2018 at 8:34 pm #113882jkParticipant
What’s the phrase I’m looking for? I like GH’s reply, it is concise, succinct and meaningful.
I’m feeling like chatty cathy right now.
Do you have any information on what basis the 2nd neuro made the diagnosis? For example, according to the literature did you have an MRI showing lesions in the spinal cord? In some people a Lumbar Puncture (LP) will have both elevated protein and elevated white blood cells. Sometimes a blood test looking for other diseases and the presence of certain autoantibodies is sampled.
In any event, apparently, the treatment for Transverse mhyelitis and CIDP/GBS are all similar. Specifically, Intravenous corticosteroid drugs, Plasma exchange therapy, Intravenous immunoglobulin (IVIG), Pain medicines. Differing treatments include anti-virals.
Further, it is unlikely that your description of left foot weakness, right foot weakness and left hand weakness matches the 1st neuro’s diagnosis of “bilateral axonal damage of only one nerve” because you’ve reported muscle weakness in these multiple limbs.
As B stated, generally shortness of breath is not a side effect of IVIG. And as B and GH asked- what is your follow up plan?
One 5 day set of treatment is not likely to be productive in the long term for either condition.
February 16, 2018 at 1:03 pm #113910
Thanks for your responses. I am in a funk today. Recovering from flu. I am having a hard time due to general weakness.Unable to do even the few things I was able to do.
I had an MRI during hospitalization. It showed spinal cord lesion c3 down all the way but the hospital neuro told me it was normal.
The second neuro is having my MRI repeated, I go this weekend.
The second neuro did an emg/ mcv again and it was normal. He thinks it is transverse Myelitis due to many reasons:
I recovered my reflexes in a very short time and my first NCV/ EMG was normal 5 days after IVIG as also my second NCV/ EMG even in a proximal nerve, unlike GBS and my fatigue has been excessive. I am able to walk but get tired and need to rest a lot to recover and I recover with rest. I also have urinary symptoms and lightheadedness related to slow heart rate. All these fits with Transverse myelitis.
He said the IVIG helped me since TM responds to IVIG as well.
I am sticking with the second neuro, he is in a tertiary care center. He is sure it is not CIDP.
His explanation of my symptoms makes sense to me.
I am still not ready for work due to fatigue even though I am able to walk!!!!Very frustrating
February 26, 2018 at 2:06 am #113952Terry S.Participant
I never had the IVIG thing but I had shortness of breath during the GBS attack and after mostly when in a crowd or when a friend was asking me multiple questions for example. Like being severely over whelmed.
I still don’t have full lung strength and I now think it’s another symptom of GBS now that I have the diagnosis a year after it happened because I have read in many sites that some people had to have breathing support during the attack and even others who were in a coma or were put into an induced coma. Turns out this syndrome can hit anyone at any level and I kinda feel lucky it didn’t stop my breathing or affect my head.
I’m tired of trying to recover because a year later I’m still trying to walk the length of a Half block. Not near that yet, my lungs get too tired first and then I feel weaker and as if I could just collapse. Must keep on tho even tho my PT is a nasty old thing with no compassion. She just thinks I shoulda ran a mile way back. She makes my lungs get tight just thinking about her before I go in. I’m hoping soon my lungs recover so I can do a block and at least make it to 7-11 some day, just to be able to do it. Ya,,, haha 7-11 is my goal and has been for a year now. I’ll get there.
February 4, 2020 at 1:31 pm #117449jon swansonParticipant
Responding to Terry S. I am 14 months in recovery, and my goal is just to be able to drive my truck again. What stops me, is my concern about my general energy level and how far can I walk without getting overwhelmed with foot nerve pain. I was forced to do some back yard weed wacking for my little dogs. I worked for about a 1/2 hour till I was totally exhausted. I was down to just 2 – 25 mil. Lyrica’s a day. The next day my foot pain was so severe I went back up to 150 mil. of Lyrica and even that did not work. This pain has lasted 4 days now. I was wondering if I should “get back on the horse” (former marine) and try it again in a few days, or just stick with the basic treadmill exercising I have been doing for about 6 weeks without any major pain? Its a waste of time talking to a doctor about it, they are clueless.
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