Renwards
New member
- Joined
- Jun 13, 2018
- Messages
- 6
- Reason
- PALS
- Diagnosis
- 04/2019
- Country
- AU
- State
- SA
- City
- Adelaide
Hello there, I’m Karen, I’m 53.
My problems started a while ago and I have been so confused, upset and angry with doctors since this has all began. I really don’t think I have MND, or maybe I’m in denial but it just doesn’t add up to me. I would really like your opinions and guidance, it would be greatly appreciated. Sorry this is so long.
Timeline
January 2017 started having problems with both Achilles.
Early February 2017 I choked on saliva (at first, occasionally, and then progressively worse.
Mid May 2017 both Achilles were injected.
Late May 2017 I notice a slight slurring of speech, Towards the end of the day.
Early June 2017 went overseas with family, my niece noticed my speech.
Whilst overseas I had a slight pins and needles feeling down my right arm, across my right cheek and a buzzing feeling on my tongue (like when you stick your tongue on a battery).
Mid July 2017 I went to my GP, he ordered an MRI (nothing unusual) referral to a neurologist.
Early September 2017 appointment with neurologist. He ordered blood work and placed me on 50mg of prednisone for 2 weeks and then tapering.The prednisone had a huge affect and my speech improved 95% but, when tapering my voice returned to slurring. Pins and needles in left arm now.
Early October 2017 I returned to the neurologist. All blood work was clear. He place me back on a different prednisone 25 mg. This made no difference at all. (I believe I was supposed to be on 50mg and there was an error with either the doctor or the pharmacy. Silly me did not realise this for a few months)
Early December 2017 Back to neurologist. He transferred me to another neurologist with concerns that I may have bulbar onset MND. This neurologist is a sub-specialist in MND.
His report states that, I have a 10 month history of progressive dysarthria and now developing dysphasia. (I have trouble swallowing tablets and some particles getting stuck in my throat, and still clear liquids/saliva). My tongue was not particularly wasted and he could not identify any fasciculations. Jew jerk normal, upper and lower limbs normal. An initial trial of steroids had a good response but a second trial of a more sustained treatment had not worked.
Mid December 2017 New neurologist report states that he is suspicious of MND as the cause of my dysarthria, but there are unusual aspects to my story, such as the initial response to prednisone and sensory symptoms which are difficult to explain.
He organised a ultrasound of my tongue, to see if fasciculations could be confirmed, and an EMG, nerve conduction test and pulmonary function test.
Mid January 2018 I had the EMG, nerve study. I asked the neurologist the findings, he stated “nothing to be of a concern”
I also asked about the ultrasound, he stated that they couldn’t find anything.
I had a Tensilon test for MG which was negative
He also put me back on prednisone at 50mg.
I also had manometry studies with another doctor, his findings were that, they were not typical of the pattern that he has seen with other patients with MND, having tension rather than relaxation in the upper parts of the oesophagus and he was unclear of a potential cause of my symptoms.
Mid February 2018 I returned to the neurologist with my partner, having been on prednisone 50mg for 2weeks.
In his report, he states that my partner and I believe that my voice had improved 50%, that was not evident to him. He suspects that any beneficial effect from prednisone may be a psychological effect from the medication. On examination he found, dysarthria speech, no definite tongue wasting or fasciculations but my tongue was weak and slow. Jaw jerk mildly brisk. No other cranial nerve abnormalities.
He states that, despite atypical manometry studies, he doesn’t believe that MND cannot be excluded as potential diagnosis at this stage, and is struggling to think of an alternative diagnoses.
Neurologist says wait and see for anymore symptoms, come back in 3 months.
During this period I see my GP, because I see my GP a lot, he has stated that there is a difference in my speech on prednisone. I go back on it at 75mg. Within days my speech is a lot better with friends and work colleagues commenting on how much my voice has improved.
I also ask my GP for a test for Lyme which was negative (I visited the Lake District UK in 2016 and was bitten by a tick)
May 2018 returned to the neurologist. I said I had been back on prednisone and had an improvement with both speech and swallowing. I had recorded my voice over a period of a few weeks to show the improvement.
His report states that my speech dysarthric, no wasting but suspicious of occasional fasciculations, tongue week and slow. He states that the ultrasound done on my tongue did suggest the presence of fasciculations (not what he told me earlier) and in combination of clear tongue spasticity is consistent with bulbar MND. The apparent improvement is difficult to account for, but wonder if this may be a psychological effect.
Referred to another neurologist.
June 2018 Third Neurologist. Her report, 12 month history of slowly progressive bulbar disfunction, marked dysarthria & dysphagia. Repeated trials of oral corticosteroids have resulted in minimal & non-sustained improvement of function. Tensilon test & AChR Abs are negative (Anti-Musk not performed), which would not support the diagnosis of MG. She states that I was upset at the prospect of being unable to exclude bulbar-onset MND. She will review all info and has ordered more tests.
To add to this info,
My speech is always worse towards the end of the day.
I slight problem with controlling my saliva.
Whenever I come off prednisone I have twitches all over my body that can last several weeks ( potassium deficiency ?)
I still have no weakness/atrophy in my body.
I still have this buzzing pins and needles in my right arm and sometimes leg.
My Achilles still play up, whenever I’m on prednisone they clear up to the lint they feel normal and I can walk several kilometres without them giving me grief.
It’s just weird that both my voice and Achilles cannot be sustained on prednisone.
My problems started a while ago and I have been so confused, upset and angry with doctors since this has all began. I really don’t think I have MND, or maybe I’m in denial but it just doesn’t add up to me. I would really like your opinions and guidance, it would be greatly appreciated. Sorry this is so long.
Timeline
January 2017 started having problems with both Achilles.
Early February 2017 I choked on saliva (at first, occasionally, and then progressively worse.
Mid May 2017 both Achilles were injected.
Late May 2017 I notice a slight slurring of speech, Towards the end of the day.
Early June 2017 went overseas with family, my niece noticed my speech.
Whilst overseas I had a slight pins and needles feeling down my right arm, across my right cheek and a buzzing feeling on my tongue (like when you stick your tongue on a battery).
Mid July 2017 I went to my GP, he ordered an MRI (nothing unusual) referral to a neurologist.
Early September 2017 appointment with neurologist. He ordered blood work and placed me on 50mg of prednisone for 2 weeks and then tapering.The prednisone had a huge affect and my speech improved 95% but, when tapering my voice returned to slurring. Pins and needles in left arm now.
Early October 2017 I returned to the neurologist. All blood work was clear. He place me back on a different prednisone 25 mg. This made no difference at all. (I believe I was supposed to be on 50mg and there was an error with either the doctor or the pharmacy. Silly me did not realise this for a few months)
Early December 2017 Back to neurologist. He transferred me to another neurologist with concerns that I may have bulbar onset MND. This neurologist is a sub-specialist in MND.
His report states that, I have a 10 month history of progressive dysarthria and now developing dysphasia. (I have trouble swallowing tablets and some particles getting stuck in my throat, and still clear liquids/saliva). My tongue was not particularly wasted and he could not identify any fasciculations. Jew jerk normal, upper and lower limbs normal. An initial trial of steroids had a good response but a second trial of a more sustained treatment had not worked.
Mid December 2017 New neurologist report states that he is suspicious of MND as the cause of my dysarthria, but there are unusual aspects to my story, such as the initial response to prednisone and sensory symptoms which are difficult to explain.
He organised a ultrasound of my tongue, to see if fasciculations could be confirmed, and an EMG, nerve conduction test and pulmonary function test.
Mid January 2018 I had the EMG, nerve study. I asked the neurologist the findings, he stated “nothing to be of a concern”
I also asked about the ultrasound, he stated that they couldn’t find anything.
I had a Tensilon test for MG which was negative
He also put me back on prednisone at 50mg.
I also had manometry studies with another doctor, his findings were that, they were not typical of the pattern that he has seen with other patients with MND, having tension rather than relaxation in the upper parts of the oesophagus and he was unclear of a potential cause of my symptoms.
Mid February 2018 I returned to the neurologist with my partner, having been on prednisone 50mg for 2weeks.
In his report, he states that my partner and I believe that my voice had improved 50%, that was not evident to him. He suspects that any beneficial effect from prednisone may be a psychological effect from the medication. On examination he found, dysarthria speech, no definite tongue wasting or fasciculations but my tongue was weak and slow. Jaw jerk mildly brisk. No other cranial nerve abnormalities.
He states that, despite atypical manometry studies, he doesn’t believe that MND cannot be excluded as potential diagnosis at this stage, and is struggling to think of an alternative diagnoses.
Neurologist says wait and see for anymore symptoms, come back in 3 months.
During this period I see my GP, because I see my GP a lot, he has stated that there is a difference in my speech on prednisone. I go back on it at 75mg. Within days my speech is a lot better with friends and work colleagues commenting on how much my voice has improved.
I also ask my GP for a test for Lyme which was negative (I visited the Lake District UK in 2016 and was bitten by a tick)
May 2018 returned to the neurologist. I said I had been back on prednisone and had an improvement with both speech and swallowing. I had recorded my voice over a period of a few weeks to show the improvement.
His report states that my speech dysarthric, no wasting but suspicious of occasional fasciculations, tongue week and slow. He states that the ultrasound done on my tongue did suggest the presence of fasciculations (not what he told me earlier) and in combination of clear tongue spasticity is consistent with bulbar MND. The apparent improvement is difficult to account for, but wonder if this may be a psychological effect.
Referred to another neurologist.
June 2018 Third Neurologist. Her report, 12 month history of slowly progressive bulbar disfunction, marked dysarthria & dysphagia. Repeated trials of oral corticosteroids have resulted in minimal & non-sustained improvement of function. Tensilon test & AChR Abs are negative (Anti-Musk not performed), which would not support the diagnosis of MG. She states that I was upset at the prospect of being unable to exclude bulbar-onset MND. She will review all info and has ordered more tests.
To add to this info,
My speech is always worse towards the end of the day.
I slight problem with controlling my saliva.
Whenever I come off prednisone I have twitches all over my body that can last several weeks ( potassium deficiency ?)
I still have no weakness/atrophy in my body.
I still have this buzzing pins and needles in my right arm and sometimes leg.
My Achilles still play up, whenever I’m on prednisone they clear up to the lint they feel normal and I can walk several kilometres without them giving me grief.
It’s just weird that both my voice and Achilles cannot be sustained on prednisone.