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NolaJen

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Oct 21, 2013
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13
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Lost a loved one
Country
US
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La
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New Orleans
Hi, I hope this is an appropriate place to post this. Four years ago my dad started having drop foot and other symptoms in his body, including twitching. For a year they doctors thought it was a pinched nerve and other things. By the next year he was experiencing weakness and difficulty walking. We were referred to an excellent specialist.

They have never been able to give us a concrete diagnosis. CIDP vs some form of MND but always leaning towards CIDP.

However, over the past 4yrs, since the start I have watched my dad decline consistently. He is now complete assist, he's in a motorized scooter, we have a handicapped van. His bedroom and bathroom have been converted to handicapped accessible. He is unable to eat/dress/bathe or use the restroom without complete assistance. It's been heartbreaking.

He's had lots of IVIG, steroid and even chemo. Still progressing.

He told me today that he is starting to have difficulty breathing. They saw his primary care today and I imagine will now proceed with pulmonary function test.

Has anybody had a similar course or known someone similar? It is so frustrating to not know exactly what we're dealing with.

I've noticed him having trouble coughing and sounding more hoarse lately as well. This is the first he's admitted to breathing issues, which likely means it's been going on for some time.
 
get to a neuro ALS specialist immediately, even if you must drive a long distance
 
Yes, I agree. Find the nearest ALS clinic and get qued-in for an appointment....this takes a while sometimes, or may require a referral from a neurologist. I would push on both fronts quickly.
 
I agree! we were told CIDP but that was ruled out when it was not put into remission with Steroids or IVIG, You need to get him to an ALS clinic, insist for a referal
 
Thanks for the replies. He actually sees a well known specialist in this area. He's had such a bizarre case.

He has also been having extreme constipation. He saw his primary care twice last week. They did tons of blood work, a chest x-ray and abdominal x-ray. He had a cardiac ultrasound.

He is having pulmonary function tests this Thursday. His breathing is still slightly labored and he has this strange type of cough:(

He sees the neurologist on Nov 12th, so I am hoping we will have more answers than.

Thanks for your responses. Any other suggestions?
 
Just to clarify this neurologist does have an ALS clinic.
 
Thanks for the replies. He actually sees a well known specialist in this area. He's had such a bizarre case.

He has also been having extreme constipation. He saw his primary care twice last week. They did tons of blood work, a chest x-ray and abdominal x-ray. He had a cardiac ultrasound.

He is having pulmonary function tests this Thursday. His breathing is still slightly labored and he has this strange type of cough:(

He sees the neurologist on Nov 12th, so I am hoping we will have more answers than.

Thanks for your responses. Any other suggestions?

for the constipation problem, i recommend using fiber supplement and stool softeners. i have similar problems. also drink lots of water
 
Water....LOTS of it helps with constipation.
 
Ok, thanks. They did stool softeners, laxatives and even an enema. Things have started to move but for the future I will tell him to drink more water. I think he plans to continue with the stool softeners. He's always hesitant to drink much b/c he can't go to the bathroom on his own. However, it's better than what he's been dealing with for the past few weeks!

Again, thanks for your answers and support. I don't know anyone in real life who has dealt with anything like this.
 
Ok, thanks. They did stool softeners, laxatives and even an enema. Things have started to move but for the future I will tell him to drink more water. I think he plans to continue with the stool softeners. He's always hesitant to drink much b/c he can't go to the bathroom on his own. However, it's better than what he's been dealing with for the past few weeks!

Again, thanks for your answers and support. I don't know anyone in real life who has dealt with anything like this.

metamucle or something similar mixed with apple juice really helps. i have to use both every day
 
This is from the LiveStrong website:

In the book "Dr. Earl Mindell's Amazing Apple Cider Vinegar," author Earl Mindell describes a special recipe for constipation using apple cider vinegar along with other ingredients. The recipe includes 2 tbsp. of flaxseeds added to 2 cups of boiling distilled water. Drain the seeds after boiling for 10 minutes. The water will turn a jelly-like consistency due to the released fiber from the seeds. Fill a cup with the mixture and add a tablespoon of apple cider vinegar. This offers the alleged benefits of apple cider vinegar with the constipation-relieving effects of flaxseed.



It is definitely not medically proven :)
 
I tried to post a recipe using flax seed and apple cider vinegar, but it doesn't seem to be here
 
have they done a nerve biopsy? 4 years is a longtime to not be told something solid.
I don't understand if the ivig and the steriods are not doing anything why are they continueing them. We did 2 rounds of ivig with no results then a huge dose of steroids and with no results and his condition continued to slowly progress CIDP was ruled out.
Next my husband had neck surgery to fix a compressed disc fro an accident years ago, they said it wouldn't fix the "possible" ALS but he figured it wouldn't hurt and perhaps we would get lucky, we weren't.
Nerve biopsy was next, he is now 3years diagnosed, and sounds he is about at the state your father is..... needing much assistance.

if your dad is on any pain meds that is not helping the constipation...medimucil 2x a day, we are in a panick if running low on the stuff!
 
Thanks for the replies. He has had a muscle biopsy, not sure about nerve. He saw another neurologist last week and he really doesn't have some of the hallmark ALS features. He had a cat scan today, they wanted to rule out a pulmonary embolism.

I just don't know what to do. He was unable to complete his pulmonary function tests b/c he just couldn't do it. He is retaining co2, his levels were high, due to his breathing issues. I am thinking he will need a bi-pap. The co2 is making him extremely lethargic and he is sleeping most of the day.

According to the neuros it could be a very bad cidp or some other unknown on the spectrum.

I guess it doesn't matter what we call it, at this point, we need to get his symptoms treated first.

Again, thanks. My heart hurts for everyone affected by these diseases, patients and caregivers.
 
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