Newly diagnosed - umn predominant als
- Status
Green Queen
Very helpful member
- Joined
- Mar 30, 2015
- Messages
- 1,304
- Reason
- DX MND
- Diagnosis
- 4/2016
- Country
- AUS
- State
- Western Australia
- City
- By the beach
Hey Skinz
You will find so much support and advice from many wonderful people here.
So sad that you find yourself here, but we welcome you with open arms.
You will find so much support and advice from many wonderful people here.
So sad that you find yourself here, but we welcome you with open arms.
Skinz83
New member
- Joined
- Jan 8, 2016
- Messages
- 7
- Reason
- DX MND
- Diagnosis
- 08/2015
- Country
- Uk
- State
- Cornwall
- City
- Truro
Hi thanks means a lot very new to forums, also sorry for your diagnosis. I'm just confused about everything new symtoms and can find much info on the diagnosis that I've been given. Also sorry about grammar as my skills are a chef and didn't try hard enough at school ha.
affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
Sorry to welcome you here skinz.
Could you tell us a little about yourself? Nothing that would identify you of course, more like your journey so far to get to diagnosis?
My husband passed from bulbar onset ALS with FTD. He had a rapid progression and I still hang out here giving support.
Could you tell us a little about yourself? Nothing that would identify you of course, more like your journey so far to get to diagnosis?
My husband passed from bulbar onset ALS with FTD. He had a rapid progression and I still hang out here giving support.
- Joined
- Jul 25, 2015
- Messages
- 1,606
- Reason
- CALS
- Diagnosis
- 07/2015
- Country
- US
- State
- tx
- City
- Dallas
Sorry that we have to welcome you to this forum but I can tell you that you will receive a lot of support here.
Skinz83
New member
- Joined
- Jan 8, 2016
- Messages
- 7
- Reason
- DX MND
- Diagnosis
- 08/2015
- Country
- Uk
- State
- Cornwall
- City
- Truro
Hi
My symptoms first started in September 2015 after getting back from my brothers wedding I was over the moon being best man when I returned home I noticed strange balance of which I didn't really think anything of but went to the G.P anyway, he thought I might have something wrong with my ears or something minor like that and put me on some medicine which didn't do anything so on my return he referred me for a routine MRI which came back clear, I was relieved.
About a month later I noticed twitching in various parts of my body I also felt like popping candy was in my mouth looked in the mirror and found my tongue was also twitching with I later learned they were called fasics and also my legs were getting stiff and balance was worse the stiffer I got and my legs started bouncing downstairs and down hills sometimes, sometimes to the point after work as a chef I was almost shuffling along.
My G.P then referred me to a neuro he said likely benign and did I have anxiety of which I had none as was over the moon after brothers wedding.
First neuro appointment he did a few reflex tests stand with my eyes closed etc. he said he will order full brain and spine MRI and EMG.
Had the MRI results which were clean and then the EMG which I now no wasn't good enough, at the end of the test tech asked me what I was worried about and I told him I had heard about MND, he then laughed and said men at 32 don't get this disease and made me repeat his to him 3 times which I thought was a bit strange but any way me and my partner both thought great nothing wrong just something that will go away. I went back to the neuro and he gave me his summary nothing wrong with me strange things just happen sometimes I again mentioned tongue twitching again and his reply was look on YouTube at what real MND twitching looks like.
The stiffness seemed to stay worse with activity and fasics also getting worse I returned to the G.P who then said he will refer me for a second opinion in a different hospital.
Got to the second neuro he did a few push and pull tests saw the twitching and said he will repeat MRI of whole brain spine and Repeat EMG.
MRI came back clean then I had EMG, very thorough I heard lots of strange sounds and the looks on techs face wasn't good, at the end I asked her the findings she said she needs to examine them later and I will hear in 2 weeks.
Neuro called me back for summary he said my EMG was abnormal but he didn't know where the abnormalities were coming from, which I thought was strange. He said he will refer me to a muscular neuro just to cover everything. I Had a letter in the post my referral had been rejected by the NHS.
I saw the G.p again and he said the EMG showed denervation down left side and mildly on the right and in the techs summary it said MND is a possibility so we both thought it was strange why I had been rejected so he mentioned private of which I agreed he referred me to a highly regarded neuro and EMG expert.
3rd neuro appointment came he gave me what I now know was a full neurological exam and repeated EMG of which he spent a long time with needle inserted into muscles selected, at the end he told me he wanted to go through all the blood tests that I had and all MRI results himself and I would here within a week.
Day of the letter he said my EMG shows chronic neurogenic activity and all 4 limbs with fasics found, I have very brisk reflexes atrophy of the left leg, gluteus, and possibly left arm, no real weakness as yet but he said all other options had been exhausted and the only thing left is MND and the went on to say the slowness of my progression and my age went in favour of a slowly progressing type.
Back to the G.p he told me he had delt with this once before in someone of similar age and wanted me to go to a clinic of excellence, it was a long way from home but I agreed.
So I travelled for the appointment he asked me all my symptoms gave me a full neurological exam looked at my tongue both at rest and
poked out I was Surprised at the end when he sat me down and asked me if I new about ALS/MND of which I had, he then told me I have umn predominant ALS with no real weakness yet he told me the stiffness was called spasticity with increased muscle tone, he said I have pathologically brisk reflexes in arms and also legs worse in the left, he told me that the bouncing of my legs was clonus in my legs I had a gabella tap and jaw jerk not sure what the means, no babinski sign as yet and that my onset was limb. He thinks it's very slow but can't be sure as he said time will tell if my speaking and throat become involved. He then proscribed me with a drug I forget the name of which I refused, as I'm not good with meds and worried about side affects not sure if i made the right decision with that but there you go. He referred me to a multi disciplinary team which is where I am now who have all been great and some I'm still to see.
Sorry about the length of this but it's been a long year and a bit.
Also I'm sorry if I take a while to return messages as me and my partner decided to get married and are now in Thailand on our honeymoon having the time of our lives.
My symptoms first started in September 2015 after getting back from my brothers wedding I was over the moon being best man when I returned home I noticed strange balance of which I didn't really think anything of but went to the G.P anyway, he thought I might have something wrong with my ears or something minor like that and put me on some medicine which didn't do anything so on my return he referred me for a routine MRI which came back clear, I was relieved.
About a month later I noticed twitching in various parts of my body I also felt like popping candy was in my mouth looked in the mirror and found my tongue was also twitching with I later learned they were called fasics and also my legs were getting stiff and balance was worse the stiffer I got and my legs started bouncing downstairs and down hills sometimes, sometimes to the point after work as a chef I was almost shuffling along.
My G.P then referred me to a neuro he said likely benign and did I have anxiety of which I had none as was over the moon after brothers wedding.
First neuro appointment he did a few reflex tests stand with my eyes closed etc. he said he will order full brain and spine MRI and EMG.
Had the MRI results which were clean and then the EMG which I now no wasn't good enough, at the end of the test tech asked me what I was worried about and I told him I had heard about MND, he then laughed and said men at 32 don't get this disease and made me repeat his to him 3 times which I thought was a bit strange but any way me and my partner both thought great nothing wrong just something that will go away. I went back to the neuro and he gave me his summary nothing wrong with me strange things just happen sometimes I again mentioned tongue twitching again and his reply was look on YouTube at what real MND twitching looks like.
The stiffness seemed to stay worse with activity and fasics also getting worse I returned to the G.P who then said he will refer me for a second opinion in a different hospital.
Got to the second neuro he did a few push and pull tests saw the twitching and said he will repeat MRI of whole brain spine and Repeat EMG.
MRI came back clean then I had EMG, very thorough I heard lots of strange sounds and the looks on techs face wasn't good, at the end I asked her the findings she said she needs to examine them later and I will hear in 2 weeks.
Neuro called me back for summary he said my EMG was abnormal but he didn't know where the abnormalities were coming from, which I thought was strange. He said he will refer me to a muscular neuro just to cover everything. I Had a letter in the post my referral had been rejected by the NHS.
I saw the G.p again and he said the EMG showed denervation down left side and mildly on the right and in the techs summary it said MND is a possibility so we both thought it was strange why I had been rejected so he mentioned private of which I agreed he referred me to a highly regarded neuro and EMG expert.
3rd neuro appointment came he gave me what I now know was a full neurological exam and repeated EMG of which he spent a long time with needle inserted into muscles selected, at the end he told me he wanted to go through all the blood tests that I had and all MRI results himself and I would here within a week.
Day of the letter he said my EMG shows chronic neurogenic activity and all 4 limbs with fasics found, I have very brisk reflexes atrophy of the left leg, gluteus, and possibly left arm, no real weakness as yet but he said all other options had been exhausted and the only thing left is MND and the went on to say the slowness of my progression and my age went in favour of a slowly progressing type.
Back to the G.p he told me he had delt with this once before in someone of similar age and wanted me to go to a clinic of excellence, it was a long way from home but I agreed.
So I travelled for the appointment he asked me all my symptoms gave me a full neurological exam looked at my tongue both at rest and
poked out I was Surprised at the end when he sat me down and asked me if I new about ALS/MND of which I had, he then told me I have umn predominant ALS with no real weakness yet he told me the stiffness was called spasticity with increased muscle tone, he said I have pathologically brisk reflexes in arms and also legs worse in the left, he told me that the bouncing of my legs was clonus in my legs I had a gabella tap and jaw jerk not sure what the means, no babinski sign as yet and that my onset was limb. He thinks it's very slow but can't be sure as he said time will tell if my speaking and throat become involved. He then proscribed me with a drug I forget the name of which I refused, as I'm not good with meds and worried about side affects not sure if i made the right decision with that but there you go. He referred me to a multi disciplinary team which is where I am now who have all been great and some I'm still to see.
Sorry about the length of this but it's been a long year and a bit.
Also I'm sorry if I take a while to return messages as me and my partner decided to get married and are now in Thailand on our honeymoon having the time of our lives.
- Joined
- Nov 5, 2009
- Messages
- 14,265
- Reason
- Lost a loved one
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- 00/0000
- Country
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- State
- WA
- City
- Seattle
Welcome, congratulations on your marriage and hope the Thailand honeymoon continues great.
You asked for advice, but mine is, keep celebrating your relationship and stay off the Net until your return. Take some time then to discuss, as a newly recommitted couple, the approach you will take to this illness, and the things that are most important to you. Every marriage is different, every person is different, and the only "right thing to do" is to be true to yourselves.
Best,
Laurie
You asked for advice, but mine is, keep celebrating your relationship and stay off the Net until your return. Take some time then to discuss, as a newly recommitted couple, the approach you will take to this illness, and the things that are most important to you. Every marriage is different, every person is different, and the only "right thing to do" is to be true to yourselves.
Best,
Laurie
Atsugi
Moderator emeritus
- Joined
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- 12/2010
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- City
- Orlando
Skinz, thanks for all that detail. That helps a lot to educate all of us.
Looks like it might be a slow progression, that's good.
Laurie, has the best advice, as usual. Enjoy Thailand and stay off the web. I spent a short time there once a long time ago and remember it fondly to this day.
Looks like it might be a slow progression, that's good.
Laurie, has the best advice, as usual. Enjoy Thailand and stay off the web. I spent a short time there once a long time ago and remember it fondly to this day.
gooseberry
Extremely helpful member
- Joined
- Jul 2, 2014
- Messages
- 3,501
- Reason
- Lost a loved one
- Diagnosis
- 5/2014
- Country
- US
- State
- FL
- City
- Tampa
Congratulations on your marriage and awesome place to honeymoon. One of the first things you learn with als is to live....so go enjoy that honeymoon!
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