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Hi glimmer..That is a blessing that there is no weakness. I pray that there will not be. That is why our neuro has not diagnosed ALS because there was not any weakness at out last appt. Although EMG was abnormal and sign of MND. I hate that we are not able to PM one another :-(. Thinking of you and your hubby often. Keep me posted. We go to GP Tues...interested to see whats going on with his shoulder. I told him to go to neuro..but he is stubborn. ;-)Hi deana, no he hasn't felt weakness in any limbs yet other than his legs going down stairs. MG has not been mentioned. I am sure we will have more information from our next visit. I don't know how to pm either, maybe we have to reach a certain status before that becomes available. I will try to instant message you when I see your on.
Hi Glimmer! By the way...love "glimmer", there is always a "glimmer" of Hope! Our stories are very similar. Has Myasthenia Gravis been mentioned? They are treating my fiance as MG right now. Like I mentioned before, the EMG says consistent with MG and/or MND. The blood work for MG is negative. Has your husband lost strength in any limbs? (Other than weak while going up stairs)- Jeff(fiance) has lost some in his left hand and now the right hand is being effected due to what ever is going on with the shoulder. I am not sure how to instant message, so if you are ever online and see me, please send me one. I would love to chat with you more. I know there are numerous emotions you and your family are feeling and sometimes it is just nice to get them out to someone. There is power in prayers, so YES! You and yours are in mine. ((((HUGS back to you)))Yes, my husband started with difficulty getting words out, slowed speech, fasciculations in his left shoulder and arm, and hand. He went to the gp in December and was sent to a Neuro for MRI, EMG & bloodwork. On January 31st we were told by the Neurologist that the MRI and EMG both showed a diagnosis of ALS. We went for a consultation with an ALS Specialist/Neurologist on Feb. 2nd where they did an extensive exam and took 8 vials of blood. He has since become very fatigued in the afternoon, and speech is becoming more strenuous. He has lost 5lbs since December, and we are attempting a gluten free diet. He is noticing that he is feeling week in the legs when going up or down stairs. We go back for the second opinion on March 13th where hopefully we will find the results of the blood tests and he will have another EMG and Nerve test. Thank you for keeping us in your prayers. I will do the same for you and your fiancé. ((HUGS)) glimmerGood afternoon, Glimmer!! I am so very sorry from the bottom of my heart of what you are going through. I take it your husband started with speech? Please share your story with me. My fiance has not been diagnosed, nor has ALS been taken off the table yet. His EMG is consistent with MG and ALS. Last visit to neuro only speech was effected, in the last month horrible shoulder issues going on. So I do not know. I suppose just wait. I look forward to hearing from you and please know specific prayers for you and your family!!Hi, ECpara!! Your messages seem so up beat and to read the your husband has such a positive attitude certainly glorifies God!! It is wonderful that he has no weakness and is still able to do yard work and (ESPECIALLY) golf...LOL...I am sure that is a stress reliever for him. You both seem to be taking something the devil meant as harm and turning it into a vessel to glorify God. That is such a testimony. I will be praying Philippians 4:7 (And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.) for you both. Please keep me posted when the trail begins and how you both are doing. Hugs sent your way!!Hi Deana. I received your reply. We are doing okay, my husband is SO positive. Yes, the EMG showed some atrophy in both arms and one leg, he also has recently been experiencing twitching in his arms. But he thinks it has calmed down some since going on Rilutek. He has no weakness in any of his limbs however, still golfing and doing yardwork! His lung capacity is great, doctor said he's a good candidate for a drug trial. We go back to Duke in March, guess we'll find out more then. God is doing some good things in our lives, this is a setback but He continues to give us peace! I'm so glad it's looking more like MG for yours! And you're right, there is NO pain with ALS, so pain is good!!!! Take care, blessings to you!Hi Deana. My husband had his appointment at Duke yesterday, it was moved up. Bad news, he was diagnosed with Bulbar Onset ALS. Bummer. But no surprise. He is totally positive. His respiration was excellent so he can be assigned to a research trial in March, we are grateful for that. Leaning on the Lord, his peace is all we need right now! How's it going for you? Blessings!Hi Deana,
Nice to meet you, sorry about your fiance. Two years ago i woke up twitching all over, no detectable weakness. A few months later a slight slur towards the end of the day. I still can eat and drink but my arms are weak. Speech is slurred and nasal. Luckily I'm functional. Still can drive and walkPatrica, thank you so much. I am so sorry you are having to go down this road. You sound so up beat in your post, I admire your strenght. He has had two blood work panels done, neither show the antibodies for MG. The SFEMG in the forehead-dirty and one in his left arm-dirty. MRI and CAT scan both are clean. He tried mesitin for 4 weeks, it made the speech worse. Rest does nothing, he can wake up with the strangled speech. He says it physically wears him out. In the past few weeks he has started with the pools of salvia..which I believe is in MG as well. He has never mentioned anything about his tongue or a lump in his throat, only that it is a strain to speak. He does not talk much about it at all.
I pray each night for all with ALS and all going through the You are the first person on here that I have felt to reach out to. I have been reading almost daily since late July. A very eye opening disease. Much thanks to you for speaking with me!!first l am sorry about your boyfriend .1999 l started with slight slurred speech a feeling of a lump in my throat and tightness in my tongue .I was sent to a neuro who said mg but blood test was negative and mestinon didn't work .sent for emg and that was neg. and called if bulbar palsy and l didn't presue it until one year and had another good emg in philly and he said he didn't know what was wrong a year later l went to Robert woods johnson had another emg which was abnormal 2004 l had muscle pain and weakness in arms.Went to nyc columbia.He said mnd in 2005 l went to John hopkins ALS dx. l worked till 07 .leg weakness in 08 now paralysis.
with mg you don't have muscle wasting and you improve with rest unlike als
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no worries...we'll figure this whole situation out eventually