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Suggest Treatment For Chronic Inflammatory Demyelinating Polyneuropathy
Question: hello:
After three neurologists with no diagnosis, I sought an out of state research Hospital. suggested due to my physical symptoms and progression to test for CIDP. My doctor saw the same. She reran my EMG and conducted a spinal tap which showed high-protein. Between that and the other tests ruling out other condition, my diagnosis was confirmed. I have the reflexes, and generalized weakness in my limbs, issues manipulating objects. I also seem to have temperature issues. My hands are always freezing. Sometimes only on the inside and sometimes with swelling on top, and sweaty palms. I still can't do stairs or lift my body.
My IVIG loading dose brought some improvement in stability of short distances in my home. Right before, I had just started relying on the Walker. I still get all red from a short warm shower and extremely weakened. I also have been getting chest tightness rarely. I was recommended by the ER for a stress test. EEG and chest xray didn't show anything.
Could there be autonomic damage?
I have been extremely fatigued.
I started PT with just a safety assessment and did a few knee lifts and reps and felt it the next day. My OT is next week as I have trouble with grip, etc. I use dictation software now.
If you have any suggestions on complementary solutions to help symptoms (diet, exercise, etc), I am open. I am limiting carbs and refined sugars, staying hydrated and avoiding alcohol.
I have no reflexes (modification to above).
Thank you again.
After three neurologists with no diagnosis, I sought an out of state research Hospital. suggested due to my physical symptoms and progression to test for CIDP. My doctor saw the same. She reran my EMG and conducted a spinal tap which showed high-protein. Between that and the other tests ruling out other condition, my diagnosis was confirmed. I have the reflexes, and generalized weakness in my limbs, issues manipulating objects. I also seem to have temperature issues. My hands are always freezing. Sometimes only on the inside and sometimes with swelling on top, and sweaty palms. I still can't do stairs or lift my body.
My IVIG loading dose brought some improvement in stability of short distances in my home. Right before, I had just started relying on the Walker. I still get all red from a short warm shower and extremely weakened. I also have been getting chest tightness rarely. I was recommended by the ER for a stress test. EEG and chest xray didn't show anything.
Could there be autonomic damage?
I have been extremely fatigued.
I started PT with just a safety assessment and did a few knee lifts and reps and felt it the next day. My OT is next week as I have trouble with grip, etc. I use dictation software now.
If you have any suggestions on complementary solutions to help symptoms (diet, exercise, etc), I am open. I am limiting carbs and refined sugars, staying hydrated and avoiding alcohol.
I have no reflexes (modification to above).
Thank you again.
Brief Answer:
Improvement is evident in your case.Consume fiber rich diet.
Detailed Answer:
Hi Mam.
I understand your concern.
Its seems pretty good that you have responded to IViG finally through a confirmed diagnosis.
Of course it will take some more time to get better and achieve near normal reflexes.
Fatiguability will gradually improve.
Yes certainly your warm shower symptoms point to Autonomic dysfunction which is a part and parcel of CIDP.
I suggest you avoid warm water baths until you improve for the next 3-6 months.
Destress yourself to avoid chest tightness.
Dictation software is a pretty good option.
In all cases you need to avoid exercises which can weaken your muscles and accelerate your fatigue.Complete physical workouts are a big no no.
Knee lifts and PT are very much allowed.
Avoid all fried and fatty food stuff.
Have Oatmeal daily for breakfast.
Its good that you are keeping yourself hydrated and avoiding alcohol.
Compliance to therapy is most vital in your case.
Post your further queries,if any.
Thank you.
Improvement is evident in your case.Consume fiber rich diet.
Detailed Answer:
Hi Mam.
I understand your concern.
Its seems pretty good that you have responded to IViG finally through a confirmed diagnosis.
Of course it will take some more time to get better and achieve near normal reflexes.
Fatiguability will gradually improve.
Yes certainly your warm shower symptoms point to Autonomic dysfunction which is a part and parcel of CIDP.
I suggest you avoid warm water baths until you improve for the next 3-6 months.
Destress yourself to avoid chest tightness.
Dictation software is a pretty good option.
In all cases you need to avoid exercises which can weaken your muscles and accelerate your fatigue.Complete physical workouts are a big no no.
Knee lifts and PT are very much allowed.
Avoid all fried and fatty food stuff.
Have Oatmeal daily for breakfast.
Its good that you are keeping yourself hydrated and avoiding alcohol.
Compliance to therapy is most vital in your case.
Post your further queries,if any.
Thank you.
Above answer was peer-reviewed by :
Dr. Pradeep Vitta
Thank you so much for your reply. You initially suspected CIDP and were right; I know you have familiarity with this rare disease.
I did not mention occasional motion sickness. My OT therapist suspects autonomic issues as well. My neurologist, whom I am seeing this week, mentioned autonomic issues are feasible.
If so, is this something that we should test for separately (tilt, breathing, stress, sweat or other test)? Does it automatically get better with IVIG or does it need to be monitored/treated separately? I got the sense from my OT therapist that there were additional medications and possible complications (hormones, urinary, circulation, etc.) which needed to be managed.
Thanks again.
I did not mention occasional motion sickness. My OT therapist suspects autonomic issues as well. My neurologist, whom I am seeing this week, mentioned autonomic issues are feasible.
If so, is this something that we should test for separately (tilt, breathing, stress, sweat or other test)? Does it automatically get better with IVIG or does it need to be monitored/treated separately? I got the sense from my OT therapist that there were additional medications and possible complications (hormones, urinary, circulation, etc.) which needed to be managed.
Thanks again.
Brief Answer:
Special tests and drugs are needed in your case to combat Autonomic dysfunction
Detailed Answer:
Hi Mam.
I understand your concern.
Yes certainly you need to go for separate tests which can diagnose as well as indicate the severity of autonomic dysfunction.
These tests are
1.Cardiac response to deep breathing.
2.Cardiac response to valsalva maneuver.
3.Quantitative sudomotor Axon reflex testing.
4.Tilt table testing specifically for cardiac sympathetic function.
You also need special drugs along with IvIg to control this dysfunction.
These drugs include Fludrocortisone and Glycopyrrolate.
Speak to your doctor with regards to these.
Thank you.
Special tests and drugs are needed in your case to combat Autonomic dysfunction
Detailed Answer:
Hi Mam.
I understand your concern.
Yes certainly you need to go for separate tests which can diagnose as well as indicate the severity of autonomic dysfunction.
These tests are
1.Cardiac response to deep breathing.
2.Cardiac response to valsalva maneuver.
3.Quantitative sudomotor Axon reflex testing.
4.Tilt table testing specifically for cardiac sympathetic function.
You also need special drugs along with IvIg to control this dysfunction.
These drugs include Fludrocortisone and Glycopyrrolate.
Speak to your doctor with regards to these.
Thank you.
Above answer was peer-reviewed by :
Dr. Pradeep Vitta
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