Waiting for test results....please help

[pickle]

Hi there,

I am a new member and want to say straight away that I am writing on behalf of my father and not myself, as he is desperate for information, as am I. He has been to the neurologist and is presently waiting for the results of the EMG (which was done everywhere) and an MRI (brain and spine). We have been told that a spinal tap may follow. We have to wait for 2 weeks for the results as the neurologist has gone on holiday and, to be honest, we are just looking for some kind of advice as to what may be wrong and how to cope with this 2 week late.

His symptoms started in April on his right arm and hand. He first got cramps and then fasciculations (where you can kind of see it underneath the skin in ripples almost). He also has been finding it hard to hold or grip things with his right hand and then when he does, he finds he cannot let his grip go (this happened with a tennis racket the other day). When he tried to play tennis he was much slower than he has previously been - I'm not sure if it was his reflexes but he just wasn't nearly as good as before. He also fell over although it looked like it was a normal trip as he was going for the ball. He also has trouble somtimes shaving becasue of the cramps.

He went to the neurologist last week who told us that he had quite severe muscle wastage (I think it is called atrophy?) in his hand and also some less sever wastage inhis upper arm. Sine then it has developed surprisingly quickly and there is now a kind of hole under his thumb where a muscle used to be. I would say his right arm is now about two thirds of the size of his left arm now. The fasciculations and cramp have now also started in his left arm and shoulders. And he has just started having fasciculations in his right leg. He also finds it more difficult to carry heavy things. My mum also notices he has spasms and twitches in his sleep.

I have tried to do as much research as possible on the internet and it seems to me that these symptoms appear to be very consistent with ALS and, particularly the lower motor neurone signs. So I guess what we would like to know, if anybody out there can help, is...

1. Am I right in thinking that these symptoms are consistent with ALS.
2. Is it right to say that they would not give a diagnosis until he had upper motor neurone symptoms too?
3. What else could this be? I have looked up lots of the things that mimic ALS but can't find anything else with these symptoms.

I'm sorry for the length of this email. My family are just so so worried and this wait until results seems to be going on forever. Any advice or help would be enormously appreciated.

Best Wishes to all of you

[awieleba]

Hi pickle

I am sorry to hear about your father! There is a poster on here whos husband had cidp in his hand and foot drop. so try searching cidp on this web site.

I wish your family strength during this uncertain time.

take care,

april

[gbrown]

Pickle:

The symptoms you have mentioned are consistent with ALS but you aren't going to get a final diagnosis until all other MND are ruled out. That's the way ALS is determined, to elminate all others diseases first. Just be patient and wait for the neuro's to do their thing. Try to keep an upbeat attitude, that helps me more than anything.
Good Luck,
Gordon

[pickle]

Thank you so much for your kind words. It sounds silly but it is so nice just to know that you are reading about our worries and take the time to write back. It really means alot.

Thank you.

[DeeMichelle]

Pickle Hi
I'm also in London and my Dad has ALS. I'm sorry to hear about your Dad. I think this kind of atrophy is very distressing. Like people here say consistent with ALS, but there's a long process of elimination before a diagnosis as you probably know and nothing is for sure. How old is your Dad?

I hope you can get all the help and support you and your Dad need.

Take care.

Dee

[pickle]

Hi Dee

Thank you so much for your message. My Dad is 55. I guessed the symptoms are consistent with ALS and I can't seem to find anything else it could be. I am really trying to stay positive for my family but it is so hard sometimes. The friends I have told have been very supportive and kind but I must say it is nice to be in contact with people who are going through a similar thing. I'm so sorry to hear about your father - it must be so difficult for you and your family. My thoughts are with you.

Vicky (my real name!)

[awieleba]

I kinda like pickle!

[laurel]

Hi Dee,
Just to give you a little hope, my husband is the person that April mentioned with CIDP. At about age 54 he had atrophy of the right hand and lower arm. He had muscle spasms in the right hand, some fasciculations, loss of strength in the hand, fatigue. Initially was diagnosed with carpal tunnel and had unsuccessful surgery. Further atrophy ensued. He had EMG's of the right arm only initially. Had MRI's of the brain and spine. Eventually he was referred to a neuromuscular disorder neurologist (the first neurologist was not a MD specialist). While being diagnosed with CIDP at the neuromuscular disorder clinic, he developed foot drop in the right foot. He had major fatigue and would sit like a zombie. At the MD clinic he had EMG and nerve conduction studies of all the limbs, and all four limbs showed axonal damage and demyelination happening. He had a lumbar puncture which showed elevated protein. He began treatment almost one year ago with IVIG monthly and has regained strength in his hand, but the atrophy that occurred prior to treatment is permanent. Initially my husband had a differential diagnosis of ALS. But we seem to have dodged the bullet as he is responsive to the IVIG. These conditions appear to be very hard to accurately diagnose. Let's hope that your father has CIDP versus ALS. Hard to know until he has further testing. Good luck.
Laurel

[DeeMichelle]

Hi Dee

Thank you so much for your message. My Dad is 55. I guessed the symptoms are consistent with ALS and I can't seem to find anything else it could be. I am really trying to stay positive for my family but it is so hard sometimes. The friends I have told have been very supportive and kind but I must say it is nice to be in contact with people who are going through a similar thing. I'm so sorry to hear about your father - it must be so difficult for you and your family. My thoughts are with you.

Vicky (my real name!)

I like Pickle too. My Dad is older and I do think that makes it all a little easier. Though for my Mum it is very hard. Yeh I found this sight so helpful and what I like is that there is such a lot of positivity here. I hope you find out what is going on with your Dad soon I found the time pre-diagnosis most stressful.
Take Care.
Dee

[pickle]

Maybe I'll stick with pickle then! - its what my family calls me sometimes. Thank you so much for all your advice. Laurel - your story has given me a little hope that it may be CIDP - the symptoms sound very similar. I guess it is just a waiting game now really. My Dad tried to play tennis again today and he is getting SO frustrated by the weakness in his right arm. Its so difficult to know what to say to him because I can see how scared he is. Anyway, thank you for all your support. I will let you all know how the results go.

Pickle x

[awieleba]

pickle,

what kind of weakness does he have when he trys to play tennis? I am thinking about trying to play, but my problem is in my legs. can he not hit the ball as hard or does he have a hard time holding raquet? I was an avid tennis player a year ago. my legs feel to weak. I have no dx yet. I am just someone who prays I will be able to play tennis one day again.

take care

april

[pickle]

Hi April

Re. tennis - he can't hit the ball as hard as his right arm is very weak. He doesn't have as much of a problem gripping the racket as he does letting go of the grip if he wants to put the racket down. You are in my thoughts April, I pray that both you and my father are able to play tennis again one day.

Pickle

[Jennifer51]

Hi there,

I am a new member and want to say straight away that I am writing on behalf of my father and not myself, as he is desperate for information, as am I. He has been to the neurologist and is presently waiting for the results of the EMG (which was done everywhere) and an MRI (brain and spine). We have been told that a spinal tap may follow. We have to wait for 2 weeks for the results as the neurologist has gone on holiday and, to be honest, we are just looking for some kind of advice as to what may be wrong and how to cope with this 2 week late.

His symptoms started in April on his right arm and hand. He first got cramps and then fasciculations (where you can kind of see it underneath the skin in ripples almost). He also has been finding it hard to hold or grip things with his right hand and then when he does, he finds he cannot let his grip go (this happened with a tennis racket the other day). When he tried to play tennis he was much slower than he has previously been - I'm not sure if it was his reflexes but he just wasn't nearly as good as before. He also fell over although it looked like it was a normal trip as he was going for the ball. He also has trouble somtimes shaving becasue of the cramps.

He went to the neurologist last week who told us that he had quite severe muscle wastage (I think it is called atrophy?) in his hand and also some less sever wastage inhis upper arm. Sine then it has developed surprisingly quickly and there is now a kind of hole under his thumb where a muscle used to be. I would say his right arm is now about two thirds of the size of his left arm now. The fasciculations and cramp have now also started in his left arm and shoulders. And he has just started having fasciculations in his right leg. He also finds it more difficult to carry heavy things. My mum also notices he has spasms and twitches in his sleep.

I have tried to do as much research as possible on the internet and it seems to me that these symptoms appear to be very consistent with ALS and, particularly the lower motor neurone signs. So I guess what we would like to know, if anybody out there can help, is...

1. Am I right in thinking that these symptoms are consistent with ALS.
2. Is it right to say that they would not give a diagnosis until he had upper motor neurone symptoms too?
3. What else could this be? I have looked up lots of the things that mimic ALS but can't find anything else with these symptoms.

I'm sorry for the length of this email. My family are just so so worried and this wait until results seems to be going on forever. Any advice or help would be enormously appreciated.

Best Wishes to all of you

hello, pickle...I just had to read your post as we have a beautiful grandson we call pickle...
Anyway I had symtoms starting in January, and went to doctor on March 31st this year and was diagnosed within 3 weeks with bulbar onset als... we were lucky enough to have private health insurance so had all the tests done quickly...MRS, blood, lumbar puncture, new conductive and emg... even though they were done quickly, there was still a lot of waiting on results and I know how horrible that is....I am 56 and just cant believe this...but at the moment you still have the hope that is could be something else, hang on to that... I am still hoping to prove someone wrong...I see you are in London... I live in Woodford Green, just inside the m25 junction 26.... dont know how close that is to you. keep hoping for the best, it just might happen. If not please get in touch, I have learnt so much, so very quickly in the past 3 months, and can point you in the right direction as to how and where to get a lot of help. There is a lot of help, you just need to know how and where to get it. Wish you all the very very best. Jennifer

[pickle]

Hi Jennifer,
I'm sorry it has taken me so long to respond - things have been so scary recently that I tried to stop reading stuff for a while but I have realised that these forums feel like a great support. I am so sorry to hear about your diagnosis - my thoughts are with you. It would be good to get in touch - I'm not sure if I'm allowed to give you my email address on here?

Things have got worse for us. We got the EMG and MRI results. We were at the Royal Free but the neuro we saw had lost my Dad's blood results and had not even read the EMG results until we were in the room and it just all seemed a little haphazard to be honest. He told my Dad they would have to do the blood tests again although it was 'highly unlikely' he would find anything significant from them. He said that ALS was his 'greatest fear' for my Dad and that we should keep our fingers crossed. So I managed to get him an appointment at the National Hospital at Queen's Square (we also have private healthcare insurance thank goodness). The neurologist we saw there was great but the news was similar. They found abnormalities in his right arm and some slight abnormalities in both of his legs. He said they have ruled out pretty much everything except motor neuron and MMN. The thing is..he has no upper symptoms but ALOT of lower ones and the neuro was very surprised by how fast this has all happened. The first sign of any kind was fasciculations in his right arm about 8 weeks ago. Then the weakness followed and the cramps and then the atrophy. He an now hardly write with his right hand and he has lost 14 pounds in weight. His shoulders are also visibly smaller. I am panicking because it seems to me that so much atrophy means MMN is unlikely. Anyway, the neuro said the best thing to do was to try Ivig and just wait and see if it works. They didn't find any conduction blocks in the EMG but the neuro said sometimes they don't find them first time round. So we took him into hospital today to start the treatment. He will be in there for 5 nights and the neuro said they will assess him 2 weeks afterwards. I guess what is scaring me enormously is, if this is motor neuron, why is it happening so fast? Does this mean he will deteriorate very fast until the end? His fasciculations are now constant in his right arm, and occasional in his left arm, legs, ankles and shoulders.

I am just so terrified as are the rest of my family. Any words of advice or support would be much appreciated

Pickle x

[crystalkk]

Pickle,

Please try and think positive that it is MMN and the IVIG will work. A 2 month time frame for all of that to be happening does not sound typical of ALS either, but I am not a dr. You never know something might come back in his bloodwork. Do you know what bloodwork was lost?

Please hang in there,

[lovelily]

Hi Pickle....so sorry about your dad. This is just a shot in the dark, but when you're desperate anything is worth a try.

Some of the things you are saying sounds like what happened to my grandmother...she had 'polyarteritis'....not to be confused with 'polyarthritis'. It is when all veins and arteries become inflamed. She lost muscles very fast, within a few weeks and almost perished. Luckily they found the trouble through blood work, but she also developed 'diverticulitis' and needed some surgery. With prednisone she recovered and lived to be 95.

I will put your dad in my prayers. I hope everything turns out well!

take care
lovelily

[laurel]

Hi Pickle,
I am praying for your Dad. Stay strong and think positive thoughts that the IVIG helps and that he has MMN. Take care of yourself, and I will continue to prayer for your father.
Laurel

[DeeMichelle]

Pickle Hi
I'm sorry to read what the neuro said. I think, as I've said before this period of waiting for a diagnosis is so stressful.
Keep in touch.
Deex

[Jennifer51]

Hi Jennifer,
I'm sorry it has taken me so long to respond - things have been so scary recently that I tried to stop reading stuff for a while but I have realised that these forums feel like a great support. I am so sorry to hear about your diagnosis - my thoughts are with you. It would be good to get in touch - I'm not sure if I'm allowed to give you my email address on here?

Things have got worse for us. We got the EMG and MRI results. We were at the Royal Free but the neuro we saw had lost my Dad's blood results and had not even read the EMG results until we were in the room and it just all seemed a little haphazard to be honest. He told my Dad they would have to do the blood tests again although it was 'highly unlikely' he would find anything significant from them. He said that ALS was his 'greatest fear' for my Dad and that we should keep our fingers crossed. So I managed to get him an appointment at the National Hospital at Queen's Square (we also have private healthcare insurance thank goodness). The neurologist we saw there was great but the news was similar. They found abnormalities in his right arm and some slight abnormalities in both of his legs. He said they have ruled out pretty much everything except motor neuron and MMN. The thing is..he has no upper symptoms but ALOT of lower ones and the neuro was very surprised by how fast this has all happened. The first sign of any kind was fasciculations in his right arm about 8 weeks ago. Then the weakness followed and the cramps and then the atrophy. He an now hardly write with his right hand and he has lost 14 pounds in weight. His shoulders are also visibly smaller. I am panicking because it seems to me that so much atrophy means MMN is unlikely. Anyway, the neuro said the best thing to do was to try Ivig and just wait and see if it works. They didn't find any conduction blocks in the EMG but the neuro said sometimes they don't find them first time round. So we took him into hospital today to start the treatment. He will be in there for 5 nights and the neuro said they will assess him 2 weeks afterwards. I guess what is scaring me enormously is, if this is motor neuron, why is it happening so fast? Does this mean he will deteriorate very fast until the end? His fasciculations are now constant in his right arm, and occasional in his left arm, legs, ankles and shoulders.

I am just so terrified as are the rest of my family. Any words of advice or support would be much appreciated

Pickle x

Glad you replied...sorry I did not find it for ages...I will give you my email address...it will be checked and then should come thru. ournewemail@googlemail.com
We too have private health, so when I went to the gp and he suspected bulbar onset, he said I would have an emergency NHS appointment within 2 weeks...gawd, could not wait that long. so got an appointment the next day privately. The neuro suspected the same thing...tried to disguise what it was, but I asked him point blank if he thought I had bulbar onset...so he says yes but we have to do the tests first...so within about 2 weeks, all tests complete, he announced he was right...Then the problems started...he wanted me on Rilutek/riluzole....but hey I was diagnosed privately...so you have to pay...about £600 per month...so he says he would give me an emergency NHS appointment, just so he could get the drug on the NHS...which is just as well, or you would also have to pay privately for alll your treatment...regular blood tests etc ...if you pay for even one private prescription.... so be warned if the worse happens and you need to get the drug, make sure you get an NHS appointment first....it did slow things down a bit for me for getting the drug , but the first prescription he gave me was worth £2500...made up for the fact that we had to go scummy NHS. I now attend a clinic funded by the mnd association...get intouch with them, they are fantastic...it is a very fast learning curve...lets hope you dont have to go there, but if you do, we are all here to help.
jennifer51