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Old 02-05-2017, 03:21 AM #1
Kkensen Kkensen is offline
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Kkensen Kkensen is offline
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Default Any idea as to what is going on

A little background I am 34 year old female. In May of 16 I had my gallblader out after 3 months of throwing up.

1 week after having it out my allergies went into hyperdrive so I went to my pcp he recomended that I get a kenolog shot. 2 days after getting this shot I started having what I thought were asthma attacks so I went back to my pcp who prescribed an inhaler and preventive. Went home a week later I was s having attacks (5) times or more a day went back to pcp who added a steroid and another preventive. After another week Still having really bad breathing issues except instead of attacks it is now full on shortness of breath I feel like there is a truck parked on me at all times. I go back to pcp who tells me that maybe I have a chest cold and gives me an antibiotic and sends me home again. At this point it has been going on for over a month and nothing is working.

I have an episode and nothing is working or helping and it feels as if my throat is closing off and I am having a hard time swallowing so I go to the er they think that it is a blood clot in my lungs where nothing is helping and want to do a MRI. Get into the MRI and the inject the contrast and the attack gets worse and I start coughing and it feels like my throat is closed off completely the Dr thinks I am having a reaction to the contrast ( have had it 6 times in last year no reaction) inject me with epi reaction gets worse so the I left with benadryl break out in hives and chest feels like it is on fire with back to back coughing spells where I am turning blue and on the verge of passing out.

We decided they are not equipped to handle me and lifefligjt me to another hospital to see pulmonologist when I get there i am told they don't have I e put on bypas machines for 4 hours given lorazepam and sent home with a referral. I call the Dr on the paper about 4 hours later to see about getting an apt was told it was be 3 months.

Go back to pcp they get me an apt for next morning while waiting for them I have Another attack and taken by ambulancGo back to the er that I was at the night before to begin with they give me breathing treatment and lorazepam and send me home.

Go to pulmonologist have attack on his office sent to another er have broncoscope done told I have vcd ( vocal cord dysfuction) told there is nothing They can do about the coughing just to deal with it. But they don't see why I am having trouble breathing send me to neuro. Neuro says he won't see me until I see ent. Ent says I have heartburn gives me acid reducer says come back in month.

By this time I have been back to the pcp because not not only can I not breath but my legs and arms feel like there are weights on them they are just so weak. Pcp thinks that it may be a year prob refers to heart Dr for stress test. Comes back normal. Decided he is going to do blood work everything comes back normal b12 and mag inluded only thing off is platelet count refers to blood Dr for thrombocyctosis.

Finally get in to neuro he does MRI of brain c- spine t- spine mra of brain everything normal says doesn't know what is wrong refers back to pcp.

By this time I now have shortness of breath constraint fatigue in arms legs tingling in arms and legs and electric shock in arms legs. They are all in the hands and feet as well. And I am physically exhausted all the time. Neuro says not me doaent know why is you g on to go back to pcp prob some autoimmune issue.

Go back to pcp more blood work ana normal sent to contagious disease Dr. A lot more blood work ( thought I was going to run dry) confined thrombocyctosis . Get I. To blood Dr explain symptoms says get bone marrow biopsy results are secondary thrombocyctosis due to inflammation. Sent back to pcp refered back to ent. Ent does MRI on sinuses says sinus infection given antibiotic says come back in q0 days.

Get call next day to come back in says I have tumor in nose and deviated septum and I need surgery they do the surgery everything fine all symptoms gone for 3 days then all back worse than before now including temp paralysis I call in ( er cLled extream fatigue) I can feel pain and some touch but not able to move legs and some times arms for hours at a time.

Go back to pcp Go over symptoms again in there for 2 hrs he says he thinks it is cidp ( chronic inflammatory demylating polyneuropathy) and refered me to neuromuscular specialist at u of u hospital. I go to apt tell her what is going on and on at this point pcp has finally a great to up gabipenton to 1800 mg and cymbalta 60 daily so in extream pain at this point.

Neuro says I want to get eeg and emg but I think it is all I. Your head. Tells me to come back in 3 months of it gets worse.

This was over a month ago able to walk a little better for now thanks to Gabi but arms and legs hands and feet still in a lot of pain and now constantly feel like they are trying to wake up with the pins and needles achey mucessle pain and electric shocks. Ended up back in er with episode of not being able to breath and unable to move arms and legs er Dr said that he agreed with pcp on diagnosis of cidp and that I needs to see neuro.

I am now on month 7 with no releaf in constraint pain if this continues the way it is going pcp says I will be in a wheelchair. But no Neuro wants to figure out what is wrong and if is cidp they don't want to treat. What do I do

Last edited by Kitty; 02-05-2017 at 10:46 AM. Reason: Added paragraph spacing for easier reading.
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Old 02-05-2017, 05:34 PM #2
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kiwi33 kiwi33 is offline
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Hi Kkensen

Welcome to NeuroTalk.

I am sorry to read about your health problems.

My understanding is that CIDP can be difficult to diagnose - it is sometimes a "diagnosis by exclusion".

The information here might help you in terms of diagnosis and possible treatments when talking with your neurologist and other members of your health care team All About CIDP - GBS/CIDP Foundation International.

All the best.
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