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markt2495

Member
Joined
Nov 27, 2011
Messages
22
Reason
PALS
Diagnosis
03/2012
Country
UK
State
england
City
liverpool
After 18 months of progressive weakness, curling of the hand, atrophy and facsiculations I have now been diagnosed with ALS, the worst part about it was the fact that I was so worried months ago and my neuro said it was mmn and was giving me ivig. I thought I was going for a simple check up and BAM. I have developed swallowing problems brisk reflexes now which is why he's definate. I was told to come back in two months and take riluzole, is that it? Is there anything else I should be doing? I feel so lost I sit here doubting his diagnostic skills and thinking of ways to beat it with vitamins etc. any advice on how to cope or just a hello would be of comfort.

Mark
Liverpool England
 
Hi Mark. I'm no expert on ALS, I'm afraid. I just found this forum recently after my Dad's diagnosis. I'm so sorry that you've been given this diagnosis.. Hopefully, you can arrange for a second opinion. Do you have an ALS Clinic near you? I hope there's some sort of ALS Association chapter in your area. I was able to speak with a nurse there over the phone. She was very helpful in providing us with information and equipment. Sorry I don't have more to offer. I'm glad you came here. There are a lot of great people who will offer you a lot of good advice.. Sending prayers for you, Mark.
 
Many thanks sharlene, I am not sure about ALS clinic but there is an mnd association meeting the 14th that I will attend. So sorry to hear about your father it must be so hard. I am having trouble accepting this as I say, I talk about it but still believe I will get better, I am scared of how I will react if I suddenly think I'm going to die. I'm sure it's a human response shared by many, I live in hope of a differential diagnosis and that's where my thoughts lye

Mark
 
Hi Mark.

I'm very sorry about your diagnosis. Did you have an EMG? From what I've heard, that is the main test that will determine whether or not you have ALS. Be prepared because they usually tell you on the spot! A second opinion is definitely valid at this point. Like Sharlene suggested, look for an ALS Clinic and Association. They will offer you a wealth of information on this disease. There are all types of clinical trials available too. Try to take things one day at a time. The forum members are great and will be here for you to help answer your questions and concerns as they crop up. Take care. Yasmin
 
Hi Yasmin
My first emg 6 months ago came back with probable mmn, it was the consultant who decided it was ALS on Monday after seeing no improvement with ivig and the increase in symptoms including cranial nerve symptoms (something not associated with mmn apparently). Has anyone ever recovered from this, I don't mean misdiagnosed but how prevelant is misdiagnosis? My next EMG is 29th. I still work full time as a mental health nurse, I'm not sure when i will have to eventually leave but I hope it's not soon, people on here seen really nice, I notice some frustration with people who are worried but I started that way and was told on here it didn't sound like ALS. I hope I can be of help to people just like you all, it may give me a sense of purpose and help me put my feelings into place. Will also be good to meet up with others as family while supportive "if there's anything I can do" etc don't understand
 
Hi Mark,

welcome to the family,so sorry for your diagnosis , but you are not alone, we are here for you!
 
Hvala vam nicolab to mnogo znači
 
Mark, I didn't realize you'd already had an EMG. I think there is a great sense of purpose being here, being able to share, help out etc. I came here a few months after my husband was diagnosed and though didn't always post, came away with a lot of information. I think really stay on top of things and always a couple of steps ahead of progression but with the help of an ALS Clinic or Society to guide you and help you through it all, medically and physically with equipment, etc. And like I said before, one day at a time. That's the only way I think. You sound like you have the right attitude. Keep it up! Yasmin
 
Sorry to find you here. There are people on the forum who have flip flopped between these two diseases. Frustrating and frightening.

I just wrote in another thread how after I was diagnosed'ed I was basically on my own to find out about the disease and care and I go to a clinic!

You will find practical advise and support in the forum. Be careful to "filter" what you read.
 
Hi Mark, My name is Char..I also was diagnosed in Oct 2010...I feel your pain, it is very confusing this ALS dianosis..and a painful one emotionally to accept. I no longer walk, legs gone so to speak, hands going...I cry, I am frustrated "How could this happen" what about my family mother 6 kids..only one left at home 14 yrs old. It's hard to explain to people how you are feeling emotionally as well as physically. Not sure how advanced yours is, are you mobile, all I can say is read and research everything before you make choices, get a second opinion I did but that can be just as confusing...one Dr sd ALS and the other sd motor neuron Disease, guess what they still have the same outcome..so that wasn't very comforting..other than to say my demise will take longer, because ALS progresses quickly...so who do you believe ? I will pray for you, I pray for everyone who has ALS...write to me anytime..I like you need to converse with someone who knows where I am at , physically and emotionally. I have a wheel chair, I bought a used Hoveround on Craigslist.com..I had my own ramp built in my house for about 80.00 in lumber...had a chair lift put in to go upstairs 2500.00....I don't have insurance and now can't get insurance because of this diagnosis. Till later Char
 
Welcome to our family! :) Let us know how we can help and answer any questions you have.
 
Welcome, you'll find friends and support here.
 
Hi Mark, Hi Char, welcome to our forum, as the others said, there is a lot of info and support here. BTW, ALS and Motor Neuron Disease (MND) are the same thing, just different names in different countries. MND is different, more autoimmune I think? can't remember

Anyway, you both need to find yourself an ALS Clinic that you can go to; find the closest ALS Association (ALSA) and get signed up with them, they have lending closets so you won't need to buy everything, and can also direct you to the clinic. Also Muscular Dystrophy Assoc. has an ALS division, they're very helpful as well.

There's no doubt there's a mourning period when you get this diagnosis, but you'll learn to LIVE with it... stay positive, look into clinical trials, and go for that trip you've always wanted to go on. Keep in touch with us on the forum, they've become my second family, and I've learned so much from these good people.
 
Welcome to Mark and Char! I hope you'll find here the answers to some of your questions and a lot of support.
 
Welcome Mark as you can see I've been around here quite a while so it doesn't always have to be doom and gloom try and keep a good attitude ask any questions you need. Good luck.

Al
 
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