- CASE FILE
53 yo I've been experiencing neurological issues for approx. 1.5 years: it effects my speech, ability to use my legs - it's not a stroke
ABOUT THIS CASE FILE
In June 2012 I experienced a sudden, unexplained wave of nausea, dizziness, speech impediment and difficulty walking. I went to the Emergency room; they did a stroke protocol - all the tests came back negative. I was admitted to the hospital to see what was causing my issues. I stayed in the hospital for a few days - they ran more test (MRI's, blood work) everything was negative. I was release, but my symptoms were still present and the doctors had no idea what was wrong. They referred me to a neurologist. I met with the neurologist - he ordered more test - everything came back negative - he did not know what caused my symptoms. He thought complicated migraines - but I never had migraines. The migraine medicine made it worst - I stopped taking it and he did not prescribe anything else. Eventually in about a month and a half I returned to normal - no more issues and I returned to work.
In June 2015 the same thing happened again - unexplained onset of nausea, dizziness, speech impediment issues, this time I could not use my arms or legs. - I was transported to the hospital by ambulance. The hospital ran the standard stroke protocol - once again they all came back negative. I was admitted. Again, they ran more test - and everything was negative. I was eventually released. (I was in the hospital for a couple of days) I started seeing my neurologist again. More test - no results. No new meds. In about a month and a half I returned to my normal and I returned to work. (My inability to use my arms clears up quickly, however, my inability to use my legs usually clears up within a day or two and I return to walking without problem – in about a week or so. When I say walking without problems, I mean not using any support or having dizziness issues, which is how I normally walk.)**
November 11, 2015 I was diagnosed with Stage 1A breast cancer. I had a lumpectomy on 12.28.15. I started 4 rounds of chemotherapy on Feb. 11, 2016 and finished on April 14, 2016. I began 33 rounds of radiation therapy around June 1, 2016 and finished July 18, 2016. I am now cancer free. I now had a new normal - so I returned to my new normal. I had been working part-time during my treatments and returned to full-time work when I finished.
March 13, 2018, once again I had a sudden unexplained onset of nausea, dizziness and speech impediments and I had a hard time, talking, focusing and concentrating. This time no general weakness, yet. When my issues started, I was working, I eventually went home (I was hoping it would just pass) But it didn't my speech got worse - speaking became increasing slurred. After a few days of not getting better, I called my doctor’s office who told me to go to the ER and they did the stroke protocol - everything was negative. Because I walked in and the stroke test was negative - they sent me home and told me to contact the hospital neurologist. I called my previous neurologist. My speech issues along with my other issues made it extremely difficult to work. (I had tried to work, March 26 – March 30. It was extremely difficult, aside from my speech issues (my office even helped by minimizing me having to answer the phone or going to court) but I struggled with headaches and dizziness. Even though I was only working about 4 or 5 hours it was difficult. It was so bad one day my niece had to come get me because I could not drive.)
Unfortunately, this time I did not my issues did resolve, as it had in the past, I did not recover within a month or two. I still continued to deal with severe speech impediments – slurred speech, difficulty talking, difficulty in communicating even simple words or phrases. Still had episodes of dizziness – difficulty walking. I was a court advocate – the vast majority of my job required me to talk to and with people.
When I visited my neurologist, he ordered more test. In April 2018 he ordered a lumbar puncture - all negative. He still thought I had Multiple Sclerosis (MS) -therefore, he referred me to University of Virginia's (UVA) MS clinic, to be screen for MS. My UVA appointment was not until August 20, 2018, this was still April 2018. He also thought it could be a condition called transverse myelitis because of a spot they found on my spine. But he stated that transverse myelitis is usually a one and done issue. My issues has technically happened twice and this was the third time and this time it was ongoing.
Because of my continuing issues – I no longer was able to work. I took medical leave from work in April 2018 and in July 2018 because I was still dealing with my unexplained medical issues, I retired.
Although, I had continuing speech issues, the dizziness, nausea and problems walking were spondaic, it was not enough to hospitalized me ... until August 12, 2018.
August 12, 2018, I was at church. I had driven myself there, I felt fine. All of a sudden, I felt this wave of nausea, light headed, dizzy. I wanted to leave church, to call my niece for her to come get me and take me to the hospital – but unfortunately, I could not walk. At this moment, I also was unable to use my arms or my legs at all. They wheeled me out of where I was sitting. The ambulance was called and I went to the hospital. They did the stroke protocol and it all came back negative. They did MRI’s – nothing definitive. Blood work- negative. They did not know what was wrong. They treated me with steroids.
I was in the hospital from August 12 – 16, 2018. While in the hospital one of the neurologists, saw something on one of my brain scans called: Superficial Siderosis – a condition where there is evidence of dried blood on the brain. (hemosiderin deposits). He thought that maybe this was the cause of my medical issues. This condition is very rare and little is known about it. But the doctors were not sure if this was causing my issues. With still no knowledge of what is causing my medical issues I was released from the hospital.
**The inability to use my arms clears up quickly, however, my inability to use my legs usually clears up within a day or two and I return to walking without problem – in about a week or so. (When I say walking without problems, I mean not using any support or having dizziness issues, which is how I normally walk.) This is true for each time I have been admitted to the hospital. **
August 20, 2018, I saw the UVA MS clinic doctor, she said I did not have MS. However, she felt there was something going on that was neurological based and referred me to a Vascular neurologist at UVA. My appointment to see him was not until October 30, 2018.
October 7 - 12 2018, I was back in the hospital – same issues – sudden onset of nausea, dizziness, inability to my arms or legs, speech issues. They completed a stroke protocol – it was negative and they ran test, and treated me with steroids – Nothing new on the test and I was eventually released and went home.
October 30, 2018, I met with the doctor at the UVA Neurological clinic. After his exam he was puzzled by what could be causing my neurological issues. Because of the superficial siderosis the doctor order an angiogram of my brain and spine. My next appointment with this doctor would be May 14, 2019.
November 6 – 9, 2018, I was in the hospital for the same presenting issues. Again, they did a stoke protocol - it was negative for stroke. They ran test again. They treated me with steroids and nothing different on the test they ran. I was released and went home
November 18 – 21, 2018, I was in the hospital. Same presenting issues. Again, they did a stroke protocol, it was negative. Because I had just been in the hospital they did not do as any MRI’s. They did blood work, which did not show anything. They did not treat with steroids because I had recently had a dosage. I was released from the hospital and I went home.
November 30, 2018, I met with the UVA doctor who would do my angiogram.
December 4, 2018, I had the angiogram – both came back “normal” there was no evidence of any current bleeding in my brain or spine and nothing to show what caused the initial bleeding.
As the new year started, I continued to function with ongoing issues, they have become my day to day pattern. I still have speech issues as well as the other issues, nothing which necessity me going to the hospital until April 9, 2019
April 9, 2019, that morning I felt fine, I drove to church. After I parked my car, I felt a wave of nausea and some dizziness but I prayed it would pass. Unfortunately, it did not and once again, I was unable to use my arms or legs so I was wheeled out of service and went to the hospital by ambulance. While in the Emergency room, they performed a stroke protocol, which came back negative. I was admitted and they did more test, which came back no change. This time the hospital neurologist thought maybe I had complicated migraines. I was released from the hospital on April 11, 2019. The hospital was also aware that would see my UVA neurologist on May 14, 2019, they felt maybe he could give me better answers.
May 14, 2019, I saw my UVA neurologist, unfortunately, he did not have any better news for me. He was aware and had reviewed my latest hospital images – but felt there was nothing more he could add. He also felt that my issues were not complicated migraines. However, he did ask me if I were to have another episode, to see if I could come to UVA hospital so they could see me during one of the episodes so they can better see what was going on. Also, he informed me that he was leaving the clinic. I have a new doctor when I returned on Oct. 1, 2019.
May 19, 2019, I went to the emergency room with the same ongoing issues, speech issues, dizziness and I could not use my legs. While in the emergency room, after it was determined I did not have a stroke, because my UVA neurologist requested, I come to the UVA hospital if I had an episode – I was transported to UVA. While at UVA they did test and bloodwork – nothing had changed. (They were able to compare my test from my hospital). They did not know what was causing my issues and they released me and I returned home. I was hospitalized from May 19 - 21, 2019,
September 8 - 10, 2019, I was hospitalized again. This time I was home and I fell. During the previous week I had not been feeling well. My dizziness and headaches seem to increase. I was also having difficulty walking without supporting myself. When I woke up Sunday – I felt more off than usual. I was struggling more with my speech, dizziness, headaches and walking. I had gotten up to go to the bathroom, my niece actually helped me to the bathroom – as I was leaving the bathroom, I asked my nephew to come over to help me to the bed, he stepped toward me I reached for him and I fell. I could not get up – I could not use my arms or my legs, I was having a difficult time talking and communicating. My family called the ambulance and I was transported to the hospital. The hospital checked to confirm I did not have a stroke. It was not and there was no change from my previous test. The hospital did bloodwork and everything was negative. They treated me with some medicine and I was released.
I continue to have the same issues - some days are better than other days. I was born with a condition called Neurofibromatosis – I have NF1. It is a condition characterized by changes in skin coloring (café-au-lait marking) and the growth of tumors along nerves in the skin, brain and other parts of the body. I do not have the skin lesions but I do have the café-au-lait markings. (definition from internet) Doctors have checked to see if there are any growths on my nerves due to Neurofibromatosis, they have said there are none.
This past year has been very frustrating – not knowing what’s going on, not knowing what’s causing my issues, and not know even how to treat my issues. Even the doctors are at a loss – some have even said, you are a medical mystery, we may even one day read about you in the medical books. Any help would be greatly appreciated. I want answers, I need answers. Thank you.