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-   -   What is your experience? How were you diagnosed? (https://www.neurotalk.org/peripheral-neuropathy/224838-experience-diagnosed.html)

DejaVu 08-23-2015 11:02 PM

Grateful for Residents with Strong Convictions
 
I have gotten may breaks through residents at a teaching hospital. They have taken more time with me, more time with my chart, etc.

After many years and tests and getting nowhere, a new resident came to the outpatient clinic and he knew I'd needed a skin punch biopsy asap. He did the biopsy. A specialist from Washington University came to see me at this location, to examine me, after having seen the biopsy. The attending docs here, whom had known me for years and could not sort out the problem, then went on high alert and started to order more tests, sural nerve biopsy, etc.

Years later, when I was additionally diagnosed with myotonia, this was due to an astute Resident having seen me in the E.R.-- unable to walk, unable to use my hands, difficulty breathing, etc. I was in a severe flare of myotonia. The ER docs were lost and were sending me home, again. I had presented at the ER many times, often weekly, in this condition and they just kept sending me home. (It was clear I was extremely impaired. I was in a wheelchair, my husband had to dress me, had to hold any water for me to drink, fed me, had to move me onto the bed, had to adjust my pillows, had to do everything for me.)

I had refused to leave this time and told them I needed to see a neurologist. The resident came to the ER and had recognized the signs immediately. He asked to be assigned to my care. He had studied the past 20+ years of my medical chart and made his case to the Attending Physicians. He had pushed to get the testing done, etc. Confirmation was made, repeatedly, through neurophysiology lab testing with the Chief of the Neuromuscular clinic, a specialist in myotonia.

I am grateful to strong-willed intelligent, insightful Residents, as they are often taking a chance when strongly differing in opinions with their supervising doctors. :hug: :hug:

DejaVu

v5118lKftfk 08-24-2015 07:20 AM

chemo induced
 
Had very early ovarian cancer, in the middle of the night the day after my very first round of chemo (carboplatinum & paclitaxel), set in very strong, decided to stop chemo early, have had it to varying degrees ever since.

... caught the cancer so early, perhaps never needed the chemo in the first place.

Natalie

Healthgirl 08-24-2015 07:58 AM

Here is one of my first posts from last year when this happened. I am still with out an answer as to what happened/ is happening. Some things have improved, some new symptoms are happening, and some things stayed the same. I was diagnosed by skin biopsy and tilt table.

I have been recently diagnosed with idiopathic small fiber neuropathy. A year ago I started having heart palpitations and strange buzzing surges that would happen in my upper torso to head just as I was about to fall asleep at night. The only other symptoms were orthostatic hypotension and foot and hand tingling and numbness from certain positions that would go away with moving around. I went and had my blood work done and everything checked out ok. Life was manageable so I just continued on. Over this summer I wasn't able to keep up with my interval strength training routine and was losing range of motion in my neck and shoulders. Shooting pains were happening from my shoulders to my hands randomly day and night. I thought it was due to my weight lifting so I decided to ease up on it and take some time off and switch to light aerobics. It continued to get worse but still wasn't that big of a deal until I woke up one morning in September and could not move my neck. My traps were in severe spasms. Since that day, my body has been ravaged. My arms and shoulders just hurt and fatigue from even folding a towel. Throughout the past four months I have been unable to much that requires my arms because of my neck and shoulders. I now have random shooting and pulsing pains everywhere and muscle twitches all over my body, buzzing feelings in my upper body and down left arm into hand. The low blood pressure has become worse. Some days are worse than others. Is there anyone out there with a similar story? I think the doctor is missing something and could care less what the cause is. I also have a high ANA and have been to a rheumatologist who doesn't know.

_dreamer_ 08-28-2015 03:51 PM

Thank you everyone for sharing your stories.

Aurelia 09-04-2015 09:15 PM

Aurelia
 
Quote:

Originally Posted by janieg (Post 1164974)
Idiopathic SFN based on symptoms and ruling out major causes of SFN with four MRIs, several rounds of bloodwork, and a spinal tap. My neuro didn't think the punch biopsy was necessary.

I'm better than I was last year when diagnosed. Possible reasons are less anxiety about it, better diet (low sugar/processed food), supplement regimen, shift in hormones. I don't take anything for pain now.

I was diagnosed with SFN last week and am now taking 300 mg of neuroton a day. I am pre-diabetic and my a1c is 5.7. I thought I was doing great controlling my glucose levels, but apparently not good enough. My neurologist said that even at my level, neuropathy is still possible. Since the pain in my feet has escalated, I'm also having headaches, hot flashes, balance issues, and depression. I' m not dealing with this very well. I still have pain and do not want to increase the neuroton but I need to deal with the anxiety and depression. I am a 68 year old female and was diagnosed with SFN through a physical exam. I have changed my diet, taking 600 mg of alpha lipoic acid and am going to try some of the other supplements that have been used by others in this forum. Any recommendations would be greatly appreciated.


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