Here is a follow-up question, please see a previous post:
Fever and Paralysis
Date of admission: 20-10-2003
Diagnosis:
- recurrent polymyalgia
- ? recurrent guillain-barre syndrome (polyradiculoneuritis)
Presentation:
14 years old female presented with weakness of all limbs, but more profound in lower limbs, with cough & greenish sputum with fever for 3 days.
Past History:
She had milder episodes of weakness in the lower limbs only in the last 4 years, latest was in march ’03, from which she was not fully recovered as she was not able to climb stairs without support before the onset of the illness.
Physical Examination:
Conscious, oriented, mild pallor, BP: 100/62 mmHg, Pulse: 90/min, Temp: 38.5, chest: occasional rhonchi, Heart: regular, Abdomen: soft & lax, CNS: sensation reduced in lower limbs. Power 2/5 in upper limbs involves mostly the peripheral muscles. Lower limbs 1-2. Reflexes reduced (hyporeflexia).
Treatment & Hospital Course:
The patient was admitted for further investigation. Her weakness is noticed to be progressing. Peak flow was worsening, from 200 L/min on admission. Patient was kept on close observation Q2-3 hours with peak flow for respiratory muscles. Patient was started on Immunoglobulin 20 grams IV x o.d. for 7 days. Her condition showed only mild improvement. Last peak flow was 200 liters/min on the day of discharge.
Nerve condition study confirmed the diagnosis of a predominantly axonal neuropathy involved mainly the lower limb, evidence of partial block noted in upper limbs consistent with segmental demyelination. So Dr. T wanted to get nerve biopsy done to the patient and other investigations include ANA, AB, ESR, C3, C4 & Antiphospholipid, but the insurance company refused further investigations as the limit of expenses was crossed and so she was discharged.
Her status on discharge:
Power: UL 3-4/5, LL proximal 1-2/5, distal 3-4/5. Deep tendon reflexes absent.
Take Home Medications: Megamox 1g PO BID for 5 days, Adol II PO TID.
Follow-up Plan: Follow-Up in OPD after 1 week with Internist, Neurologist.”
When I came back for the follow-up I was given high doses of Prednisolon & Ultralan.
I was then suggested Physiotherapy twice a week in the hospital.
But when I saw myself not recovering I refused to my parents to not to go back to the doctor.
But now when I went to Pakistan in my summer vacations I got this problem again. And I hope you could understand how bad it is for me, being an Asian girl, to show people that I am paralyzed to walk. Because, according to my parents, it may affect your marriage in the coming future, and I too understand this thing … because mostly people don’t accept my kind of girls.
I still remember what you said “Please bear in mind that I cannot offer diagnosis or treatment suggestions over the Internet”, but Dr. pls help me know the treatment, what should be done to get to the root of the problem & what is its treatment in order for me to never get this problem again and be healthy forever without being tensed of outsiders, as due to my illness I always feel I won’t go to my friend’s house she has many stairs, I want to go to a shop but it has many stairs, I won’t go there because I will have to walk a lot, and I can’t continuously walk too much. And plus I have gained a lot of weight due to continuously sitting for a long period of time and then I have got too much of fat on my hips & thighs. And Dr. there’s one more thing I would like to share with you is that because I’ve got fat hips I & my family have noticed it a lot that my hips (because of being heavy and then because I feel most of the pressure on hips while walking, climbing stairs, or getting up from the floor) look bad.
Dr. I expect help from you despite the fact that you stated “Please bear in mind that I cannot offer diagnosis or treatment suggestions over the Internet”. I still hope to receive some sort of help from you.
Would be grateful to you.
Doctor Joshua’s Answer:
Thank you for the additional information. There are many forms of neuropathies, and not being a neurologist, I don’t know this area very well. Guillain-Barre did cross my mind when I read the original post, but I was not familiar with the rare, recurrent type. There are also many other recurrent or chronic neuropathies, including chronic relapsing (autoimmune inflammatory) polyneuropathy, which usually has a more gradual worsening nature as opposed to the relatively rapid development of symptoms in Guillain-Barre. A triggering infection also points more toward Guillain-Barre, and the hyporeflexia is one hallmark sign of this disease. Also there are many genetic disorders (which apparently do not fit your case because there is no family history), and some rare mitochondrial diseases, and I’m sure many others that I don’t know about.
Treatment of Guillain-Barre and certain other neuropathies usually consist of intravenous immunoglobuline (IVIG) and corticosteroids (such as prednisone). Plasma exchange is also used.
Treatment options for multiple sclerosis (MS) today include interferons, novantrone, glatiramer acetate and natalizumab (Tysabri). Immunoglobulins (IVIG) are sometimes used for certain types of MS. Exacerbations (flareup, attack, relapse) of MS are usually treated with corticosteroids, sometimes with plasmapheresis (plasma exchange).
If I understand correctly, you have not fully recovered and are still suffering from motor weakness. I feel that if this is the case, you should receive physical therapy focusing on making you stronger and improving your quality of life. Also, with such a devastating illness, psychological support is helpful, in the form of psychotherapy or counseling aiming to help you cope with your illness. I have much sympathy for you being a young girl with a disability and anxiety over your body image - I understand that this is a very difficult situation for you.
I hope this information is helpful to you in some way, but I’m sorry that I cannot give you specific advice, diagnosis or treatment suggestions - first of all because I cannot physically examine you and I do not know your complete medical history, and of course also because I’m not a neurologist and do not have the requisite experience with diseases of this type.
My recommendation is that you make an appointment with a neurologist who has special knowledge in neuropathies and/or demyelinating disease, if at all possible.
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