help to swallow

[mixedblessings]

i am now having trouble swallowing. what can "they" do to help me? swallow?even swallowing spit

[ggreg]

Thanks for the kind words.  Didn't realize you were getting that heart I.V.  I remember on TV they wound up putting it in the neck, which is VERY dangerous, so I remember that PIC line now.  Since your regular doc doesn't have views on weakened immune system, hopefully the neuro might have something to say or can refer you to a second specialist that specific issue, in case it matters.  But at least the neuro will be able to figure out your ear, I do believe.  And I hope your nephew finds answers too, and remember, it's just an off chance that what I read said it was genetic.  GG

[mixedblessings]

Hello there.
again i have to tell you that you are one phenomonal person! every where i look you are responding to people that need so much hope and info! and to boot you are trying to cope with your own issues! i hope you know how much people are grateful to you. Back a couple of responses ago you mentioned having the iv antibiotics in my hand. the type of iv line they use for these antibiotics have to go through a large vein that ends up close to the heart it is call a PIC lin. i have earlier tried a mid line but even that one was inserted into the inside of the arm but does not go close to your heart. the medicine is very strong and with one dose would blow out the veins in your hands. even with the midline i ended up with vasculitis and other hosts of issues so they needed to beging using PIC lines. so far i have had aabout 7 pic lines. they aren't fun to say the least but that is usually the only way i can fight infections.

again thank you so much for the support and hoope you give to all of us.
BTW went to my gp  and as i described the way my body is responding to infections he didn't say anything...just stared at me asking when i see my neuro. i will be so glad when that aaptmt comes...may be some answers. my brother has so far broken his hand from fallling and got a major concussion from falling. i just can't shake the notion that we are dealing with some sort of genetic disorder. to boot my son has had heart issues almost every day.we took him in for ekg and blood work.
i just wish we knw what we are dealing with.

sincerely,

mixedblessings

[ggreg]

Dear Sandi,
No, I looked around and could not find about the familial thing.  Could be I misread an article, I went thru quite a few last time I looked.  Anyway, I looked again this morning and just could not find it.  So, I am sorry if I gave misinformation and sorry I couldn't find where I thought I'd read it.  Hope they figure you guys out soon.
GG

[mixedblessings]

thank you very much for your replies. as each day passes i seem to get weaker and weaker. you mention that you had come across a site through google that had genetic links. i am so sure that my brother is going through exactly what i have and i am concerned about my son. he occassionally has heart pains and they don't know what is causing these. one blood sample they took from him had some kind of protein that would cause this type of trouble but brian hubby couldn't remember what its name is and alll tests on his heart come back normal.
if you ould even remeber what it was that you googled so i might be able to find what you came across that would be great!!

thank you so much you seem to be a great source of information for alot of people on this site!!
sincerelly

sandi turner

[ggreg]

When you go see your doc for I.V. antibiotics, ask him to explain your ear in terms of a CSF leak.  By the way, they can put the I.V. in your hand vessels.  I am older and that's sometimes the only way they can get a line in.  Also ask them what you should do for a weak immune system, just in case that is playing a part.  By the way, one of the websites that came up for me on Google said there is a type of inherited or familial weak immune system, and later I remembered your relative being sick too, so could be that's what you guys have, but sorry, can't recall what it was.  

[mixedblessings]

thank you very muc for your response. i went to an on call md last night to again address my ears leaking. again there is no ear infection. i am concerned that it is a cerebral spinal fluid leak. after hearing there is no infection in my ears, i had him check my urine (he didn't think it was necessary but my body lets me know loud and clear if i have an infection) sure enough red blood cells white blood cells and puss loaded in my bladder. since this is the second one in 2 1/2 weeks the antibiotic they are giving me is not working.so it is back to my infection dr for iv antibiotics. i don't know how they are going to do this. last time it took almost 2 hrs to get the pic line in and i ended p in hospital for a week from severe hematoma. can't say life is predictable.


thanks again and any more thoughts please let me know. ohyes vitamins 2 x day water by the bucket on a daily basis, infection or no.

[ggreg]

I think I can address your ear and swallowing issues now.  You most definitely have an ear infection, I don't care what the clinic told you.  The one you have, otitis externa, will make that sticky smelly drainage AND will make your neck area hurt like the devil, which will make it very hard to swallow.  You need to see an ear nose throat ENT doctor, he will fix it.  

Now, since your ear is infected, and you also had an infected bladder, this is telling me your immune system isn't working as it should.  Your immune system is weak, and there are about 50 reasons for that, including the adrenal problem your docs are now talking about.  You can do a general search on the internet with the words "weak immune system, causes," and a whole pile of websites will come up that discuss it.  As long as you have a weak immune system, you're going to get these wild infections everywhere.  For example, AIDS patients have the worst immune systems there are, and what kills them is not the AIDS virus, but rather the immune deficiency problems the virus creates.

Hope this clarifies things for you.  Check out those websites on weak immune system, and also get your ear infection cleared up with an ENT doc, and I hope someone will eventually find a way to treat your weakened immune system.  In the meantime, drink plenty of water all the time and also take a multivitamin and mineral supplement a couple times a week.

[mixedblessings]

i am sorry for not being more detailed. so many things have been happening in this last month that my head is spinning! sometime literally:) for 15 yrs docs told me i had ms. now they have told me that it is more along the lines of adrenalleucodistrphy and huntingtons. from what i have read in this forum this is very common thing the docs do. my brother has been fighting infections for the last 5 years almost mirroring me and now has cns involvement. a neur has only picked hime up about 2 months ago so it could be a while untile we know exactly what it is.however with me in the state i am now i don't think the docs are going to try the "MS" pretension. my son as well has fought infections his whole life as well.
i went to a ear doc hoping that drainage is from an infection but no such luck and i don't see my neuro until march 23. so, i don't know where i go from here with leaking i sure don't think it is a good thing and i don't know how long it is to safely wait til march 23.
adrenalleucodistrophy is the nom de jur but nothing is certain i guess til i see them.

the difficulty swallowing is like my throat muscles won't do what they do naturally to swallow even to swallow and has been a symptom of infecion the last time. so we went to a walk in clinic and although me ears are normal (NO INFECTION) my bladder was full of red blood cells, white blood cells and puss. sorry i know it is disgusting. i am on alot of pain meds which would probably be why i didn't feel the pain.
if someone could give me a little guidance i would sure appreciate it about leaking ears and swallowing are my iimmediate concerns
thank you all for your patience.

sincerely
mixedblessings

[ggreg]

Dear mixedblessings,
Yeah, tell us the whole story, we don't know what you're talking about.  I did look at your profile page where all your posts are listed, and another post you made said your docs were looking into an autoimmune disorder.

You also said you would wake up with lots of sweat on one side of your neck.  About all I can offer with that and your trouble swallowing posted above, absent any other info, is you may have a dreadful ear infection, which can swell up your neck lymph nodes, and make it hard to swallow.  Also, anytime you have infection, you'll have a fever, and that will make you sweat, perhaps it's on the side you slept on.  Or, if it's in your ear on one side, that might explain what's going on with the one-sided sweat.  You had also mentioned Huntington's in another post, but those symptoms mimic so many other things, no way can we say that's it without more info.  

You should visit an ear nose throat ENT doc, and you may need a scan of your head, and they should draw blood to see what sort of evidence that might provide as to what you got.  Post back to us, and we'll try to figure you out.  In the meantime, drink lots of extra water, eat hot soups, gargle with salt water.
GG

[Bridget A. Hewitt, RN]

HI,

Can you clarify your question a little?  You say you are "now" having trouble?  Do your have other symptoms?  Are you currently being evaluated for something?  Can you repost your question with a little more info so that it can be answered?