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Old 03-24-2012, 06:08 PM   #1
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Unhappy Scared this is Als/mysathia gravis

I am currently undergoing a number of tests which may be related to either mysathia gravis or als. I was admitted to hospital in December 2011 with difficulty swallowing, breathlessness and a slight voice change. Whilst in hospital I had a general MRI to rule out MS, this was clear, also had a modified barrium swallow which came back as mild pharyngeal dysphagia due to unknown cause. I was then discharged from hospital and would have to see a neurologist as out patient for more investigative test.

Since then I have seen a Gastrologist who performed an endoscopy and found some narrowing of the oesophagus and inserted a ballon to stretch. Also seen an ENT who inserted a camera up my nasal passage and down my throat, this test also came back clear. I then saw the neurologist who explained that i was presenting with symptoms typical of als or mysathia gravis. I would have to have more extensive testing to also rule out other neuro conditions.

I then had a more specific MRI which indicated increased signal intensity in the T2 deep white matter which is more prodominant in the motor strip and motor tracks. MRI indicated more marked in each occipito-parietal region adjacent to the lateral ventricles - which is suggestive of ALS. I also had most recently a NCS and EMG at the time of the test the neurophysist who conducted it said he didnt see 'anything nasty' but would have to analyze the results.

Since December I have experienced the following symptoms, swallowing has become increasingly difficult, voice has changed, cramps in left calf and toe, crawling sensation on skin, occasional twitching of eyelids and legs and feeling of heaviness from knees down and very tired.

I am hopeful that someone can help and shed some light to all this for me, as you can understand it is and has been very frustrating not knowing what is going on. Are these symptoms / test results that of ALS or something else. Any feedback would be greatly appreciated, I'm worried sick that is ALS .Thanks Jo

Last edited by babajojo; 03-28-2012 at 09:49 PM.

 
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Old 05-29-2012, 04:15 AM   #2
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Re: Scared this is Als/mysathia gravis

Quote:
Originally Posted by babajojo View Post
I am currently undergoing a number of tests which may be related to either mysathia gravis or als. I was admitted to hospital in December 2011 with difficulty swallowing, breathlessness and a slight voice change. Whilst in hospital I had a general MRI to rule out MS, this was clear, also had a modified barrium swallow which came back as mild pharyngeal dysphagia due to unknown cause. I was then discharged from hospital and would have to see a neurologist as out patient for more investigative test.

Since then I have seen a Gastrologist who performed an endoscopy and found some narrowing of the oesophagus and inserted a ballon to stretch. Also seen an ENT who inserted a camera up my nasal passage and down my throat, this test also came back clear. I then saw the neurologist who explained that i was presenting with symptoms typical of als or mysathia gravis. I would have to have more extensive testing to also rule out other neuro conditions.

I then had a more specific MRI which indicated increased signal intensity in the T2 deep white matter which is more prodominant in the motor strip and motor tracks. MRI indicated more marked in each occipito-parietal region adjacent to the lateral ventricles - which is suggestive of ALS. I also had most recently a NCS and EMG at the time of the test the neurophysist who conducted it said he didnt see 'anything nasty' but would have to analyze the results.

Since December I have experienced the following symptoms, swallowing has become increasingly difficult, voice has changed, cramps in left calf and toe, crawling sensation on skin, occasional twitching of eyelids and legs and feeling of heaviness from knees down and very tired.

I am hopeful that someone can help and shed some light to all this for me, as you can understand it is and has been very frustrating not knowing what is going on. Are these symptoms / test results that of ALS or something else. Any feedback would be greatly appreciated, I'm worried sick that is ALS .Thanks Jo
Hi just want to given an update and get some feed back , Went back to my Docoe on April 18th May 2012 and was advised that EMG and NCS showed that I had tongue wasting and twiching and weakness in chin and neck and that this and all the other results confirmed that I have ALS, it felt like the ground had just been pull from underneith me.
I was told 3 to 5 yrs depending on progess, I still have problems swallowing, discomfort in throat, voice is still deep ,twitching has increased to all over body and cramps in both calfs, very weak tried and have just start to cough after food for no real reason.

How fast does the ugly disease progress I feel so angry and sad at the same time and don't know what to do first....please help

Thank for reading my post.

 
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Old 05-29-2012, 04:17 AM   #3
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Last edited by babajojo; 05-29-2012 at 08:40 PM.

 
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Old 05-31-2012, 11:57 AM   #4
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Re: Als/mysathia gravis testing

I'm very sorry to read about the ALS. You will be in my thoughts.

 
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Old 05-31-2012, 08:02 PM   #5
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Re: Scared this is Als/mysathia gravis

Hi Babajojo:

I am very sorry to read what you are going through. When my husband was dx with ALS, I literally felt like I could not breathe.. like I had been sucker punched. I know several times we went to docs or for testing.. holding onto hope that it was something rare or simple or something they had just missed... I actually remember hoping that maybe he had a brain tumor. We were left with the diagnosis and the Doctor said.. You seem like a nice young couple.. I wish you good luck. ???? Really?? Luck?
Since the medical community could offer us little in the way of treatment, we decided to deny it. My husband also had lyme disease.. we live in the Northeast.. and it is fairly common.. so we decided to treat the lyme and see what happened. Seriously, what did we have to lose? I think holding onto hope gave us extra time.
Progression is different for each person.. and I believe it has to do with age and general health before symptoms.. the body reaches a "tipping point" and cannot compensate for the weakness at some point and so everything becomes more difficult.. more marked. I know he became very fatigued.. it was most likely a result from not getting enough oxygen.. He started sleeping in the recliner.. rather than lying down fully.. which helped.
It is up to you and any support/family you have on how you want to live with this disease. Although we never enlisted any support from the MDA/ALS association.. I have heard that they can be quite helpful in getting resources to you at a time when you may appreciate having people around that may understand some of your needs.. I cannot wish you "luck" but I will send my prayers to you. I know that sometimes you do not feel it.. but you must understand that you are not alone. I will tell you one other thing.... one of our Harvard trained neuros told us that sometimes.. unexplainably.. symptoms have reversed. In just a couple of patients. No one knows why or how... maybe the tipping point was reversed. I think about that a lot. He was not the kind of doc that was full of fairy tales.. He was rather blunt about things.. but I think it is important for people to know. Manage what you can, accept help from those who offer and live your life.. it is still your life.. it is changed but you are known for who you are.. not your condition.

 
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Old 05-31-2012, 08:04 PM   #6
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Re: Scared this is Als/mysathia gravis

Hi Babajojo:

I am very sorry to read what you are going through. When my husband was dx with ALS, I literally felt like I could not breathe.. like I had been sucker punched. I know several times we went to docs or for testing.. holding onto hope that it was something rare or simple or something they had just missed... I actually remember hoping that maybe he had a brain tumor. We were left with the diagnosis and the Doctor said.. You seem like a nice young couple.. I wish you good luck. ???? Really?? Luck?
Since the medical community could offer us little in the way of treatment, we decided to deny it. My husband also had lyme disease.. we live in the Northeast.. and it is fairly common.. so we decided to treat the lyme and see what happened. Seriously, what did we have to lose? I think holding onto hope gave us extra time.
Progression is different for each person.. and I believe it has to do with age and general health before symptoms.. the body reaches a "tipping point" and cannot compensate for the weakness at some point and so everything becomes more difficult.. more marked. I know he became very fatigued.. it was most likely a result from not getting enough oxygen.. He started sleeping in the recliner.. rather than lying down fully.. which helped.
It is up to you and any support/family you have on how you want to live with this disease. Although we never enlisted any support from the MDA/ALS association.. I have heard that they can be quite helpful in getting resources to you at a time when you may appreciate having people around that may understand some of your needs.. I cannot wish you "luck" but I will send my prayers to you. I know that sometimes you do not feel it.. but you must understand that you are not alone. I will tell you one other thing.... one of our Harvard trained neuros told us that sometimes.. unexplainably.. symptoms have reversed. In just a couple of patients. No one knows why or how... maybe the tipping point was reversed. I think about that a lot. He was not the kind of doc that was full of fairy tales.. He was rather blunt about things.. but I think it is important for people to know. Manage what you can, accept help from those who offer and live your life.. it is still your life.. it is changed but you are known for who you are.. not your condition.

 
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Old 05-31-2012, 09:13 PM   #7
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Re: Als/mysathia gravis testing

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I'm very sorry to read about the ALS. You will be in my thoughts.
Thank you so much.

 
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Old 05-31-2012, 09:59 PM   #8
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Re: Scared this is Als/mysathia gravis

Thank you for replying, I'm so sorry to hear about your husband you both sound so stronge and positive my thoughts are with both of you.

I will take on board all you have said,you are right I will have to learn and ask for support when needed I have loving Husband and three adult KIDS also I have reg with a MND clinic at our local hospital who have set up a managment plan and have start to go to MND support group It was very upsetting but feel I need to go as my fear is not knowing what is coming next.

Once again thank you, I will take each day as it comes and stay positive to best on my ability and keep hope and wish that your husband, myself and others with ALS experience Reversed Symptoms.

 
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Old 10-04-2012, 08:00 PM   #9
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Re: Scared this is Als/mysathia gravis

How are you doing? are you getting the support you need? My thoughts are with you and your family.

 
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Old 10-22-2012, 03:54 AM   #10
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Re: Scared this is Als/mysathia gravis

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How are you doing? are you getting the support you need? My thoughts are with you and your family.
Hi Jenny, I'm doing my best taking each day as it comes,since last post I had my peg put in (July) and this did not go well, I had it removed on Thurs 18th Oct I was in to much pain and because I was not using it feeding and my weight was stable doctors said I need quality of life and would keep any eye my weight will need to reinsert if weight starts dropping again. Doctors are saying my progression is slow (one of lucky one's I guess) my speach is a lot slower,lots of cramps lower legs and very stiff and always tired and not sleeping at night or day. Have started going to MND support group in our local area once a mth and they are great . I go to palative care clinc every friday if I can and they aslo are great don't know where I'd be without them.My problem is that I don't know whats next and that no one can help me with this, just waiting to see what happens next and when and living with fact I'm slowly dying, I somtime think I just can't do this but then look around me and have so many friends and family I love and still need me - I do what I do for them and people like you who care. Love Jo

 
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Old 10-25-2012, 05:35 PM   #11
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Re: Scared this is Als/mysathia gravis

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Originally Posted by babajojo View Post
Hi Jenny, I'm doing my best taking each day as it comes,since last post I had my peg put in (July) and this did not go well, I had it removed on Thurs 18th Oct I was in to much pain and because I was not using it feeding and my weight was stable doctors said I need quality of life and would keep any eye my weight will need to reinsert if weight starts dropping again. Doctors are saying my progression is slow (one of lucky one's I guess) my speach is a lot slower,lots of cramps lower legs and very stiff and always tired and not sleeping at night or day. Have started going to MND support group in our local area once a mth and they are great . I go to palative care clinc every friday if I can and they aslo are great don't know where I'd be without them.My problem is that I don't know whats next and that no one can help me with this, just waiting to see what happens next and when and living with fact I'm slowly dying, I somtime think I just can't do this but then look around me and have so many friends and family I love and still need me - I do what I do for them and people like you who care. Love Jo

 
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Old 12-04-2012, 09:19 PM   #12
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Re: Scared this is Als/mysathia gravis

Hi Jo-

I am glad to hear your reply.. yes quality of life is what is important.. In my opinion..

It sounds like your docs are doing the right thing and keeping tabs on your weight.

My husband also experienced lots of leg cramps and stiffness. I would do massaging and it seemed to help some.. at least alleviate the stiffness. I am not sure how your husband and kids are doing.. the unfortunate thing for us was that everyone was really stressed and often tried to hide their stress from everyone else.. it was like no one wanted to be the "weakest link". The big difference being that my children were 4 and 11 when their Dad was diagnosed.. I felt like I had to carry the world on my shoulders.. and I would cry every morning in the shower.. so that no one would see me.. so I would not upset anyone...

The old verse from Paul.. when I am weak then I am strong.. is so true. Although it seems contradictory at first. It was when I tried to do everything for myself and my husband that I struggled.. it was when I admitted that I could do just about nothing... that I felt at peace. Maybe it was some form of acceptance.. not of the end result.. but of what the journey was. I could not change what had happened or the illness. Only the way I thought about it.

That was the other thing.. what you said.. about people around you that love and need you. I never knew the true depth and measure of love in general or spousal love specifically until it was so soundly tested. I never ever thought I could stand by and be so helpless when the only person I had been with since I was 16 was cruelly suffering. It is simply that Love outweighs all else.. and is everlasting. It brings the graces of strength and hope and courage. I am continuing my prayers for you.
Truly yours-

Jennifer

 
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Old 03-17-2013, 07:53 AM   #13
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Re: Scared this is Als/mysathia gravis

Hi all, At the end of march it will be one year to when I was diagnosed with ALS / my progression remains slow (thank god) but my steak day are over, my speech is very slow and soft / swallowing has deteriorated my twitching / cramping and stiffness has increased and they last a lot longer, left side of my body is showing muscle wasting but with love of my family and friends I remain positive / strong and am going on a trip to Hawaii with my girls (Nellie and Menka) on 30th of March for 9 nights(can't wait). Something new that has started over the last few weeks is I have been sweating a lot mainly my forehead and legs is this part of this ugly disease? I will be seeing my doctor this week hoping he can tell, mean while I would like to ask if anyone else with ALS is or experienced this as well. Looking forward to your reply's..Thank you so much Joanna.

 
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