Post Doctoral Visit VAMC

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Post Doctoral Visit VAMC


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Old 02-02-2014, 05:01   #1
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Unhappy Post Doctoral Visit VAMC

Today I saw the doc in the OKC VAMC. It turns out that I am worse than even I suspected.

I have no feeling from the knee down.

I can only sense pressure from the waist down to the knees.

I have little feeling in my lower torso roughly 2 inches above the waistline.

I couldn't resist the doctor when they asked me to push their hands away with my legs (yet surprisingly I can walk rather clumsily and very slowly).

I couldn't raise my legs (in a sort of flutter kick fashion) more than 2 inches off the bed.

NO reflexive response in my right knee, severely diminished reflex response in the left knee.

Weakness in my bladder and colon.

And I have lost a lot of tissue mass from atrophy in my legs.



They refilled my insulin and test strips (thank god)

I got prescribed Gabapentin 300mg for the nerve damage pain.

I got prescribed 5/325mg Hydrocodone for when the pain gets to be really bad (I can endure a lot so I won't take it unless it is absolutely needed)

Yay me right?

God...I'm so tired of fighting...I'm so exhausted and weary from all this. I fought in the military for the lives of others and suffered. I'm fighting now and suffering. When will it stop...When will it all end...

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Old 02-02-2014, 08:59   #2
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I am so sorry you must endure so much bad news.

Were they able to tell you why all of this is happening? Do you have a diagnosis?

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Old 02-02-2014, 10:34   #3
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I'm so sorry, Justin! This sounds awful.

Any chance of seeing a neurologist? This is moving so quickly for standard diabetic neuropathy, and from what you've reported your glucose is good.

Seems like something else might be going on.

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Old 02-02-2014, 10:52   #4
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((((((((((((((((((((((Justin))))))))))))))))))))))

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Old 02-02-2014, 11:42   #5
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That appointment was to get the referral to neurology at a later date...they still don't know what's going on with me.

Don't know what else it could be other than proximal neuropathy. All the symptoms fit perfectly. I don't feel unwell and my last blood test showed no elevation that I'm not used to seeing in my wbc (been elevated for 10 years straight now on all types of immunity cells...it explains why I'm never physically sick with anything other than diabetes complications) so i'm not sick with anything I can feel. My lipid profile is outstanding. Spinal tap showed no conclusive evidence that I had CIDP, meningitis, multiple sclerosis, or any infection of the spinal fluid. Though proteins were just mildly on the high side of normal it wasn't relevant.

Why must my body be so challenging lol. Dr. House would love my case haha

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Old 02-02-2014, 12:56   #6
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Just a wild stab at it... DKA perhaps?

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Old 02-02-2014, 13:22   #7
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Well IC it could play definitively into my total diagnosis but I wouldn't say it's the major culprit. I've had many hospitalizations for DKA that didn't do this but it could have exacerbated the overall nerve damage.

That and 8 years of HbA1c levels of 10 - 13 (mostly 12 and 13) on account I didn't know about LCHF MCT Ketogenic Diets, Basically going through the five stages of dying trying to accept my disease doctors not putting me on a pump when I needed one.

Oh and my five month stay in Italian prison (long story, I was exonerated though and pardoned) where they wrote down I was treated and then shoved me in solitary without treatment might have played a major role in the exacerbation of my condition in the beginning. Imagine needing insulin and not getting it for five months. The only reason I lived through that is (i think) because I ate only meats and vegetables and refused the breads and pastas after a while AND they rarely fed me anyway (once every three to five days) but wrote I was on a proper dietician approved diet and compliant with that diet.

God that was torture...

Anyway, overall this disease has been poorly controlled since its inception...but I have to admit the disease progression is atypical and has come on rather quickly with the comorbidities and complications.

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Old 02-02-2014, 13:27   #8
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Wow. Sounds like hell. Well, when I hear "Italian prison" these days, it's usually about Amanda Knox, but that's another story.

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Old 02-02-2014, 13:59   #9
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I don't know, Justin. This is just terrible. I do agree with Tamagno - this seems to be quickly moving forward and from what I understand, you've been in pretty good control. You're only 28 years old and the damage seems to be pretty intense for that age. It sounds to me like something else is going on, too. How old were you when you were diagnosed?

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Old 02-02-2014, 15:04   #10
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I've only been this way for 8 years. Doctor said she's 70/30 (Diabetes/Not Diabetes) certain it is diabetic related. She's concerned as well as to why it's rapidly progressing.

And yes, while my bg had stabilized for the most part I don't think a week will undo 8 years of the massive abuse my body had endured at 10 -13 consistent HbA1c levels.

It's plausible to assume I'm just a medical mystery when it comes to how fast this is progressing. I've learned my diabetes had been very curious and brittle and adaptive to treatments. It is very atypical in its progression. The endocrinologist who reviewed my case said they've never seen diabetes do this to anyone in their ten years of practice and my neuropathy is the worst they've seen.

I'm like chaos with a heartbeat when it comes to this disease.

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