Restless
New member
- Joined
- Nov 6, 2014
- Messages
- 2
- Reason
- Learn about ALS
- Country
- US
- State
- Or
- City
- Portland
Long story short, my breathing started to become difficult when lying down, but was only getting really bad on some nights, and was mildly present in the daytime. I started to get concerned that something worse was going on so immediately got tested for Hiv, Syphilis (VDRL), thyroid panel, etc. Everything came back normal so they decided it was all anxiety and prescribed me buspirone. Upon taking the buspirone I had a grand mal seizure, and when the paramedics were assisting me they mentioned that my heart was extremely tachycardic and that I should follow up about that. Of course the dr didn't care and said it was anxiety.
Now a couple months in I started having cognitive decline to the point that I could barely read or watch tv, my my chest would ache whenever I stood up. I began walking with a shuffle, but blamed that on generalized weakness. I stayed in bed like a zombie hoping that my illness would go away.
Eventually my cognitive decline got so unbearable that they decided to do a Spinal tap, but they only ordered barebones protein and glucose. Results once again unremarkable with my protein sitting on the higher end of the scale. Now unable to walk without assistance and being nearly comatose, I begged my family to drive me from my small town to a bigger hospital. Once we got to the hospital I was immediately admitted because I threw a bad ekg. After days of testing I was diAgnosed with POTS (dysautonomia). They ran a few other tests, lupus and another few, but all negative. By this point I has starting to have trouble chewing and swallowing my food, but they discharged me and told me to follow up with a neurologist.
Months later was finally able to see a neurologist. Now wheelchair bound and having constant breathing issues, snd MRI was ordered of my brain and spine. Brain unremarkable and mild spinal stenosis in c3-4/c4-5 with narrowing of the right foramin. Radiologist noted that this was unlikely the cause of my symptoms. Once again, was tagged as anxiety depite my pumonary function testing showing as both restrictive and obstructive. Spent more months at home feeling bery unwell, loss of appetite, 50 lbs weight loss with muscle wasting.
I could now barely move, a confirmatory blood test was ordered to see if I ever *had* syphilis (FTA-ABS), lyme PCR & a test for Myasthenia Gravis. All negative, of course. I have had numerous er visits by this point in time, and my cbc always shows mild anemia, and I'm often low in magnesium, potassium and Vitamin D. Was also having frequent urination with urine retention and was admitted to the hospital on the neuro floor. Aside from the basic touch your nose to the doctors finger tests, not much time was spent with a neurologist. Blood tests were ordered to check for t-cell leukemia, sjogrens syndrome & c-difficile as I was still having bouts of diarrhea. All negative, and discharged.
After seeing a pulmonogist he ordered CTs of my chest and they found a mass in my right lung. They wanted to play the wait and see game but I wasnt ok with that obviously. After running out of ideas I was able to convince my insurance to approve a full body PET Scan to look for Cancer. The mass in my chest did not show as cancer, but my mediastinal lymph nodes lit up like a christmas tree with a high SUV of 7.5 . Fear now switched to Lymphoma, but at least there was a possible answer. A biopsy was scheduled right away.
The biopsy was performed with an endoscopic Fine Needle Aspiration (which isn't the best way to find lymphoma). The results were non-necrotizing granulomas and I was diagnosed with Sarcoidosis and put on 60mg of prednisone daily. After almost a month I was hospitalized with steroid psychosis and put on a quick taper. During my time on the steroids I felt no improvement at all, but had a hefty appetite and broke out in acne. Since then the Drs have not put me on any meds for it, as they state it is mild Sarcodosis and didn't correlate with my symptoms unless I have Neurosarcoidosis. They performed another spinal tap to test for something that was common with neurosarcoidosis but the test results were normal.
Since then and leading up till now I have had no luck. I wake up every morning with the worst deathly feelings, my oxygen saturation is often in the 80s or worse, can barely make my body breathe despite having no lung condition (the mass cleared up), have a lot of trouble swallong food or liquids along with the exaustive effort of chewing food and trying to use utensils, i'm very lightheaded and dizzy at all times, with minor bouts of dementia a couple times a week, horizontal double vision, extreme fatigue and I'm mostly bed bound. I feel so ill that I wouldn't be all that surprised if I fell into a coma typing this.
Thanks for taking the time to read this, does any of this sound like ALS to you? Any other ideas? My next step is the Mayo if I can live that long. I'm just plain feeling hopeless at this point and worried that I will suffocate if not put on ventilation soon. Bless you all, no matter what I have, I definitely can have empathy for anyone suffering with chronic disease. Thank you all for your time.
Now a couple months in I started having cognitive decline to the point that I could barely read or watch tv, my my chest would ache whenever I stood up. I began walking with a shuffle, but blamed that on generalized weakness. I stayed in bed like a zombie hoping that my illness would go away.
Eventually my cognitive decline got so unbearable that they decided to do a Spinal tap, but they only ordered barebones protein and glucose. Results once again unremarkable with my protein sitting on the higher end of the scale. Now unable to walk without assistance and being nearly comatose, I begged my family to drive me from my small town to a bigger hospital. Once we got to the hospital I was immediately admitted because I threw a bad ekg. After days of testing I was diAgnosed with POTS (dysautonomia). They ran a few other tests, lupus and another few, but all negative. By this point I has starting to have trouble chewing and swallowing my food, but they discharged me and told me to follow up with a neurologist.
Months later was finally able to see a neurologist. Now wheelchair bound and having constant breathing issues, snd MRI was ordered of my brain and spine. Brain unremarkable and mild spinal stenosis in c3-4/c4-5 with narrowing of the right foramin. Radiologist noted that this was unlikely the cause of my symptoms. Once again, was tagged as anxiety depite my pumonary function testing showing as both restrictive and obstructive. Spent more months at home feeling bery unwell, loss of appetite, 50 lbs weight loss with muscle wasting.
I could now barely move, a confirmatory blood test was ordered to see if I ever *had* syphilis (FTA-ABS), lyme PCR & a test for Myasthenia Gravis. All negative, of course. I have had numerous er visits by this point in time, and my cbc always shows mild anemia, and I'm often low in magnesium, potassium and Vitamin D. Was also having frequent urination with urine retention and was admitted to the hospital on the neuro floor. Aside from the basic touch your nose to the doctors finger tests, not much time was spent with a neurologist. Blood tests were ordered to check for t-cell leukemia, sjogrens syndrome & c-difficile as I was still having bouts of diarrhea. All negative, and discharged.
After seeing a pulmonogist he ordered CTs of my chest and they found a mass in my right lung. They wanted to play the wait and see game but I wasnt ok with that obviously. After running out of ideas I was able to convince my insurance to approve a full body PET Scan to look for Cancer. The mass in my chest did not show as cancer, but my mediastinal lymph nodes lit up like a christmas tree with a high SUV of 7.5 . Fear now switched to Lymphoma, but at least there was a possible answer. A biopsy was scheduled right away.
The biopsy was performed with an endoscopic Fine Needle Aspiration (which isn't the best way to find lymphoma). The results were non-necrotizing granulomas and I was diagnosed with Sarcoidosis and put on 60mg of prednisone daily. After almost a month I was hospitalized with steroid psychosis and put on a quick taper. During my time on the steroids I felt no improvement at all, but had a hefty appetite and broke out in acne. Since then the Drs have not put me on any meds for it, as they state it is mild Sarcodosis and didn't correlate with my symptoms unless I have Neurosarcoidosis. They performed another spinal tap to test for something that was common with neurosarcoidosis but the test results were normal.
Since then and leading up till now I have had no luck. I wake up every morning with the worst deathly feelings, my oxygen saturation is often in the 80s or worse, can barely make my body breathe despite having no lung condition (the mass cleared up), have a lot of trouble swallong food or liquids along with the exaustive effort of chewing food and trying to use utensils, i'm very lightheaded and dizzy at all times, with minor bouts of dementia a couple times a week, horizontal double vision, extreme fatigue and I'm mostly bed bound. I feel so ill that I wouldn't be all that surprised if I fell into a coma typing this.
Thanks for taking the time to read this, does any of this sound like ALS to you? Any other ideas? My next step is the Mayo if I can live that long. I'm just plain feeling hopeless at this point and worried that I will suffocate if not put on ventilation soon. Bless you all, no matter what I have, I definitely can have empathy for anyone suffering with chronic disease. Thank you all for your time.
