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Old 07-15-2010, 06:07 PM #1
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Unhappy worried about symptoms.

Hello, I wanna keep this as simple as possible, ok I went to the Dr. for symptoms of shakey, weak, fatigue, dizzyness, and I had a blood work done up and results came back that I had anemia.. it was 9.8 so she put me on iron and some vitamins and also some bactrim for a uti, well I am not sure when the tingling and numbness started but it did.. it was real close when I started taking the meds, so I dont know if the bactrim caused it but after 5 days of taking it they told me to stop because it wasnt the right meds for my infection but my infection was gone so I never took the other meds they perscribed me , so I told her about my symptoms and she said let her know in a week if they are still there, well my symtoms progressed after a day to pain and cramping, burning and random pains on my legs, knees, arms, hands, hip, and latley the last couple days in my throat it feels like numb or cold, and it seems to be getting worse in there, its like it goes into a cycle to where it doesnt hurt to bad and its tolerable but then it starts and it moves in different areas.. and somtimes I get muscle twitches, I am just worried I have 8 children ( 3 r step) happily married and I am only 32 years old, I am in the process of buying my first home. and this starts? my dad died from PN.. any one have any advice or input on whats going on? Thanks april
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Old 07-16-2010, 12:02 AM #2
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When drugs cause allergic reactions, these can go on for days after stopping them. The Bactrim is a long acting one besides.

So if after 2 weeks you still have this, I'd see the doctor again.
In the meantime, try some Benadryl 50mg 3 times a day, and Zantac 150mg 3 times a day and see if this resolves. Both are histamine blockers and often used together for drug and food reactions.

I think you need a B12 test, and Vit D test. Your B12 should be 400 or above. Don't accept "normal"...get the numbers. Many doctors think 200 range is normal and it is NOT. Anemia may be due to low B12, as well. The target for the D test is 50-80ng/ml. Don't accept 30 as normal either! It is sad but true that many doctors don't have accurate ranges for these tests in US. So patients have to take over in this case for themselves. You can ask the doctor if in your blood work, the MCV was elevated. If so, this points to low B12 also.
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Old 07-16-2010, 07:32 AM #3
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Quote:
Originally Posted by april05 View Post
.......... my dad died from PN.. any one have any advice or input on whats going on? Thanks april
This is the first I've ever heard of this happening in 12 years of researching and being on PN boards. I doubt this very much.
PN is a chronic condition, not a disease - and it is not known to be fatal.
Could you give details, please?
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Old 07-16-2010, 08:46 AM #4
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This is the first I've ever heard of this happening in 12 years of researching and being on PN boards. I doubt this very much.
PN is a chronic condition, not a disease - and it is not known to be fatal.
Could you give details, please?
well he started out with numbness in his hands then couldn't lift his feet up as high, he was tripping over things so he went to the dr. so they did one of the those tests where they stick a needle in his skin and checked his nerves, and it came back that he had PN, well he got progressively worse to where he was using a walker and finally he had to go into a nursing home, while in there he ended up in a wheel chair and got worse and worse to where he couldn't feed himself any more and he had to be in a supported wheel chair, because he couldn't cough any more he developed pnuemonia and ened up in the hospital well he got so bad while in there they sent him to ccu and put him on a c- pap and then he went into a coma slight state because of his oxygen levels and they gave him antibiotics but they weren't working fast enough and he couldn't eat and drink so the dr. Said he would probably starve to death before the antibiotics and because of the PN he would need a trach. To breath the rest of his life because his stomache muscles weren't working any more due to the PN he previously signed a dnr, hevdid wake up one time before he passed away and we all got to say goodbye to him, he died two days later, I was very upset. Because I didn't know he was gonna die from it I thought he was just gonna be dissabled for the rest of his life but my older sister knew he was gonna die from this, I guess because it attacked his breathing muscles he would have died anyways or would need a trac. Which he did not want done.
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Old 07-16-2010, 09:30 AM #5
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This is the first I've ever heard of this happening in 12 years of researching and being on PN boards. I doubt this very much.
PN is a chronic condition, not a disease - and it is not known to be fatal.
Could you give details, please?
ok I think all this happend in a year time span, maybe less, He started out with numb hands and then he was tripping over things, so he went to the dr. they did one of those tests that they stick a needle or somthing in his skin and test his nerves and it came back that he had PN, and it was probably caused by his alcholism, but he did have diabetes but it went away because he lost weight... but then he was found in the snow and my brother found him passed or somthing and all his symptoms happend after that so I dont know what really caused it but it progressivly got worse and he ended up using a walker and then he finally ended up in a nursing home in a wheel chair, well he was having trouble doing many things and then he got to the point to where he couldnt feed himself anymore and had to be in a supported wheel chair, and then he ended up going to the hospital because he was having trouble breathing and he had pneumonia, he ws sent to another hospital and admitted to ccu and and went into a coma like state because of his oxygen levels , he was put on a c-pap and the dr. said that he would probably die of starvation because he wasnt eating and the antibiotics wasnt working fast enough and even if he did get better he would have to be put on a trach for the rest of his life because he couldnt use his muscles to breath because of the PN , he wake up two days before he passed away and we got to say good bye to him...I was pretty upset at the fact that he died cause I thought he would only be paralyzed the rest of his life but my sister and him knew that he would eventually die from it.

I am scared that the same thing is going to happen to me, another thing I am wondering about is why is it not so bad when I wake up and it gets worse and worse as the day goes on? And why do the symptoms constantly change to differnent areas in my body and the accual symtoms change to..its really weird, and what really scares me is when it goes to my throat and I cant feel my food go down my throat.
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Old 07-17-2010, 01:40 PM #6
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I am so sorry, April. That was a rough decline.

There may have been other issues...perhaps he really had some myasthenia gravis, mixed in there. Autoimmune diseases sometimes cluster and overlap. In males, MG usually shows up after 50, and some doctors don't recognize it clearly. Just reading the MG board here, illustrates the challenges those patients have.

There are rapidly progressing PNs, and now they typically offer IVIG to stop them. But others can be hereditary, and don't respond to IVIG or other attempts to halt them.

Once a person gets pneumonia, and loses respiratory ability, it can be a fast decline. We had a cousin who developed pulmonary fibrosis after some radiation for a breast lump. This horrible cascade left her dead after 6mos or so. She was breathing normally until that one treatment, and boom, that was the end.

So I am sorry you had to lose your Dad that way.
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Old 07-18-2010, 08:26 AM #7
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I'm sorry you lost your Dad that way. too.
I thank you for giving us more info on his PN progression.
This happening may be rare, but could possibly be
inherited as an Autonomic PN process. I'd go to a specialist in
APN and be given as many tests asare in the book.
(go to www.lizajane.org for a list of tests)
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Old 07-18-2010, 08:22 PM #8
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Thank you for your condolences... And sorry for the double post, the first time it didn't show up so I wrote another one, well a small update it's not as bad as it was but it's mostly in my right hand, it is numb and achey, and somtimes feet and leg pain sporatically, I am soposed to call we'd if it hasn't gone away. Thank you for your help! I feel like I am going crazy somtimes and it help to talk to ppl that understand.
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Old 07-19-2010, 12:22 AM #9
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Quote:
Originally Posted by april05 View Post
ok I think all this happend in a year time span, maybe less, He started out with numb hands and then he was tripping over things, so he went to the dr. they did one of those tests that they stick a needle or somthing in his skin and test his nerves and it came back that he had PN, and it was probably caused by his alcholism, but he did have diabetes but it went away because he lost weight... but then he was found in the snow and my brother found him passed or somthing and all his symptoms happend after that so I dont know what really caused it but it progressivly got worse and he ended up using a walker and then he finally ended up in a nursing home in a wheel chair, well he was having trouble doing many things and then he got to the point to where he couldnt feed himself anymore and had to be in a supported wheel chair, and then he ended up going to the hospital because he was having trouble breathing and he had pneumonia, he ws sent to another hospital and admitted to ccu and and went into a coma like state because of his oxygen levels , he was put on a c-pap and the dr. said that he would probably die of starvation because he wasnt eating and the antibiotics wasnt working fast enough and even if he did get better he would have to be put on a trach for the rest of his life because he couldnt use his muscles to breath because of the PN , he wake up two days before he passed away and we got to say good bye to him...I was pretty upset at the fact that he died cause I thought he would only be paralyzed the rest of his life but my sister and him knew that he would eventually die from it.

I am scared that the same thing is going to happen to me, another thing I am wondering about is why is it not so bad when I wake up and it gets worse and worse as the day goes on? And why do the symptoms constantly change to differnent areas in my body and the accual symtoms change to..its really weird, and what really scares me is when it goes to my throat and I cant feel my food go down my throat.
My sensory PN is like that too, some PNs are typically like that: light in the morning and then grow more painful as the day proceeds with the most pain at night. I think sleep has a great effect on my pain level and even tho' my meds may be wearing off during the night, if I'm asleep, the body's natural pain killers take over, I've read. It works for me. But I've also read other PNers posts that their days are not like this....not everyone is the same.
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