Adult CF?

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ellie2153

Guest
I am a 23 year old female. I don't use any drugs, drink heavily, or have any serious medical issues that I know of. Several months ago I had numbness in all my extremities that lasted four days and then went away. At the time I also had some trouble performing motor tasks. I would try to move or lift something and it felt like my forearm muscles just constricted instead moving the direction I wanted to move.

After that the symptoms just cleared up and for a month I was fine again. I had all but forgotten about it and then suddenly I was numb in all my extremities again. My lips were also numb. I had the same motor issues. This time I had a burning pain down my back on the sides, and also right under my belly button. I would sometimes have pain in my belly that I thought was intestinal but when I went to the bathroom it turned out my bladder had just been really full. But I had not felt any urge to urinate other than this pain. During this episode I went to class and I was having a lot of trouble following the conversation. I felt foggy, dizzy, slow and confused. I was writing notes and found that it was really difficult to remember the shapes of the letters. Afterwards my mom asked me about class and when I told her about it she decided we should go to the ER.

In the Emergency Room they did a neuro exam and it was normal (no stroke.) They took some blood and urine and they told me my liver enzymes were elevated (ALT128 and AST 60-something). They also said there was blood and mucus in my urine. However, they did not believe the test results were related to the symptoms and so they sent me home and said to follow up with my primary care physician.

That appointment was about five days later. My PCP reran the same tests which showed microscopic hematuria. My liver enzymes had come down but were still elevated (ALT 68 and AST normal). I also had low vitamin D (level was 14). My doctor did not try to interpret these results, but referred me to a neurologist, and put me on a Vit D supplement.

The neurology appointment was three weeks later. The doctor reran all the same tests and also tested ACE levels, blood count, sjogrens antibodies, lime antibodies, and ordered an MRI. At this point all the tests were normal except my vit D was still a little low (level was 20) even after a few weeks on the supplement. The MRI was normal except there was a lot of mucosal thickening on one side of my head. The neurologist said maybe a virus had caused all my symptoms and the odd liver tests. He sent me on my way and said I could come back if I have more symptoms, but for now everything looks good. I have had numbness since then and burning in my back and bladder that has lasted only a day or so at a time and gone away again. I haven't gone to the doctor again because it costs to much and so far has been useless anyway.


I've had flu-like symptoms (congestion, cough, etc.) every time the numbness has started.

I am thinking maybe this is a mild form of Cystic Fibrosis. I've read some posts by people diagnosed in their 50's. Am I over-reacting?

 

Printer

Active member
I was dx at age 47. I have never heard of CF symptoms similar to yours. Having said that, I would do two things. Contact your nearest Approver CF Clinic and request a sweat test and make an appointment with the Neurology Department at the largest Teaching Hospital that you can get to.

Bill
 

LookingforPeace

New member
Potentially relevant, maybe not. I've had numbness in my LEFT arm, blurred and tunnel vision, and my speech was slurred. I went to emerg as well. I forgot where it was. While I was there the symptoms worsened. I was told I was having a migraine. Couldn't believe it.

You have several more symptoms. But your first few reminded me of this instance so I wanted to share.
 

CFkitty

New member
I am a 23 year old female. I don't use any drugs, drink heavily, or have any serious medical issues that I know of. Several months ago I had numbness in all my extremities that lasted four days and then went away. At the time I also had some trouble performing motor tasks. I would try to move or lift something and it felt like my forearm muscles just constricted instead moving the direction I wanted to move.

After that the symptoms just cleared up and for a month I was fine again. I had all but forgotten about it and then suddenly I was numb in all my extremities again. My lips were also numb. I had the same motor issues. This time I had a burning pain down my back on the sides, and also right under my belly button. I would sometimes have pain in my belly that I thought was intestinal but when I went to the bathroom it turned out my bladder had just been really full. But I had not felt any urge to urinate other than this pain. During this episode I went to class and I was having a lot of trouble following the conversation. I felt foggy, dizzy, slow and confused. I was writing notes and found that it was really difficult to remember the shapes of the letters. Afterwards my mom asked me about class and when I told her about it she decided we should go to the ER.

In the Emergency Room they did a neuro exam and it was normal (no stroke.) They took some blood and urine and they told me my liver enzymes were elevated (ALT128 and AST 60-something). They also said there was blood and mucus in my urine. However, they did not believe the test results were related to the symptoms and so they sent me home and said to follow up with my primary care physician.

That appointment was about five days later. My PCP reran the same tests which showed microscopic hematuria. My liver enzymes had come down but were still elevated (ALT 68 and AST normal). I also had low vitamin D (level was 14). My doctor did not try to interpret these results, but referred me to a neurologist, and put me on a Vit D supplement.

The neurology appointment was three weeks later. The doctor reran all the same tests and also tested ACE levels, blood count, sjogrens antibodies, lime antibodies, and ordered an MRI. At this point all the tests were normal except my vit D was still a little low (level was 20) even after a few weeks on the supplement. The MRI was normal except there was a lot of mucosal thickening on one side of my head. The neurologist said maybe a virus had caused all my symptoms and the odd liver tests. He sent me on my way and said I could come back if I have more symptoms, but for now everything looks good. I have had numbness since then and burning in my back and bladder that has lasted only a day or so at a time and gone away again. I haven't gone to the doctor again because it costs to much and so far has been useless anyway.

Also possibly relevant: I was diagnosed as failure to thrive as a baby- I had severe tracheomalacia and GERD, but I was put on a feeding machine and my doctorsdid not understand why I still failed to gain weight for so long (I was about 10 pounds at a year old). After I started eating solid foods I began gaining weight and became a pretty normal toddler, but I had low blood sugar and was a little underweight all through my childhood. I have continued to have reflux/heartburn issues all my life. As an adult I've been pretty healthy but I have Raynaud's syndrome in my hands and feet and also have occasional migraine headaches.

I've had flu-like symptoms (congestion, cough, etc.) every time the numbness has started.

I am thinking maybe this is a mild form of Cystic Fibrosis. Is that crazy? I've read some posts by people diagnosed in their 50's. Am I over-reacting?


The only way to know for sure is to have a sweat test, and if that's inconclusive, get a DNA test. Nobody here can diagnose you. As for your symptoms, they don't scream "CF" to me, but CF varies from person to person. Good luck and I hope you find answers.
 

HuntersmomTBM

New member
ellie2153,
Hi this is an old thread. I just saw you had Tracheomalacia and Failure to Thrive as a child. My 16 year old son has Tracheobronchomalacia, Innominate Artery Compression and Mild Variant CF. I would love to hear from you. Did you get tested for CF? What were the results. There is a dr who is studying the connect between malacia and CF. I am on Facebook under Colleen Pitts Longhi.
 
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