diagnosis

[NCGIRL]

Sorry that you have this disease. I was diagnosed last year when I was 34 yrs old. I have to say the doctors that diagnosed me said that since I was young I'll be better off. Being young does NOT make the progression faster. Don't focus on death... focus on living your life to the fullest. Do what you always wanted to do while you can. Spend all the time you can with your family and friends and be happy! I have a strong faith in God and that comforts me when I'm down. I pray your progression slows down. Take care

 

[nightwolf_mk]

Thanks for all your messages. I believe in God too. I'm trying to be strong but it's being hard. I hope someday they can find a way to slow down or cure this disease.

 

[Bliz]

I am so sad, I remember myself telling you its just BFS...god, more than 5 years and now ALS..I am so sorry..Good luck man

 

[Grateful]

I know it's hard but I think you need to make the effort to talk to the people at ALS Brazil now; there's such a lot that they can do to help you, but they can't do anything at all if they don't know you exist.

And taking positive action will itself help to diminish your sense of helplessness...

 

[Ms. Pie]

Hang in there MK. Stay close. We can do this!

 

[notgivnup]

nightwolf, I am so so very sorry for your diagnosos, you are not alone we are all here for you on this journey together. Praying for you as well as all of us for someone to find that cure. Welcome to our very special family. {{HUGS}}

 

[Bliz]

Is your diagnosis the final one and confirmed? I read your very first post, you said you had developed twitches during the infection after the thyroid surgery. That would be so coincidental if the ALS started at that time and remained hidden for 6-7 years presenting itself only with fasciculations and cramps..just thinking.
Your EMG confirmed that? Do you have UMN signs?
I so hope they misdiagnosed you..
Hang in there!

 

[mazzi]

Nightwolf, sorry for your diagnosis ! it is really odd to have 7 years of more of twitching which then developed in ALS. I would ask for a second opinion and I hope too they have misdiagnosed you!

Hang in there!

 

[Toto's Dorothy]

Thank you Bliz for being so observant. You mention seeing a doc tor one day and a week later, without a mention of any testing to be upcoming, you have now been di ag nos ed. Can you please explain, why for years you reject the good di sease and embrace the one you should be refuting?

I went back and read 7 pages of your posts. For 6 years, you doubted your di ag no sis but not once did you mention seeking a second opinion. You told others to move on, yet you did not. You go from having body wide twi tch ing to being di ag nos ed with PBP. I also remember me asking if you had an A L S A, so that you could get any med i cal e quip ment you might need. Your response was that you don't have those in your country, yet a forum family member from another country has to inform you of what your country has to offer? Will you be seeking a second opinion with the ALS Clinic in your country?

You also mentioned your family not being helpful after the diagnosis, could that possibly be from dealing with you and your malady for so long? We recently had someone here want our sympathies. Eventually, she was found out and it hurt a lot of people.

Family, something doesn't feel right and I will be the first to say "I'm sorry" if I'm wrong. We have suffered greatly in the last few months and I just don't want others hurt by this person.

 

[GKGK]

nightwolf_mk, after reading your messages you said you performed an emg recently in arms and legs and it was normal except for the fasciculations. Even you are affected in bulbar area, the emg should be dirty even tested just in arms and legs, no?

I really hope they misdiagnosed you!

All the best,

GKGK

 

[Bliz]

GKGK: Thas was my impression too. However, with PNB in early stages there does not have to be involvement lower on the spinal cord, but still..what is the diagnosis based on? For PBP they would definitely need to test tongue on the EMG, otherwise they could not give that diagnosis. Or is that working diagnosis that has to be confirmed?

 

[GKGK]

GKGK: Thas was my impression too. However, with PNB in early stages there does not have to be involvement lower on the spinal cord, but still..what is the diagnosis based on? For PBP they would definitely need to test tongue on the EMG, otherwise they could not give that diagnosis. Or is that working diagnosis that has to be confirmed?

I read he has been dealing with symptoma for years, then I think it will not be early stage. Thats the reason with clean emg (except fasciculations) in arms and legs I think it is possible the doctor misdiagnosed him!

Best,

GKGK

 

[nightwolf_mk]

Hello everyone. Yes, I've been twitching since 2007 and I had bfs but what started happening to me this year is very different. Four months ago I went for a walk in the park and after that day I started having those "new type" fasciculations in my right leg after an injury in my right foot. This foot never healed and when I showed it to the doctors they said that it will not heal because this was not a common injury and it was a droop foot. The twitches are very different from those I already had from bfs. With the bfs twitches I had them throghout my body but they were occasional and very sligth. The twitches I have now are very different. They are non stop and stronger. I don't know how to explain that very well. It's like they are going on and on and they go to different parts of my body. One thing I think its strange is that it appears they are comming from my spine. If I sit in one position, the twitches start in my arm, for example. If I change position the twitches change to my leg. It's like some kind of electrical impulses that comes from my spine and goes to some random place of my body and this place depends on my position. I also started having many cramps throghout my body at the same time. I have difficulty swallowing some kinds of food. My joints started cracking at the same time and I started losing strength in my arms and can't walk very well. I lost weight very fast during this time. I had an emg and it was normal except for fasciculations. They made a lot of tests to see other conditions and all came back negative, so they are saying it's als in initial stages. I don't know what kind of tests I should do but I would do any other test to see if this is another thing but I am not a doctor so I don't know what to do, so I believed in the doctor diagnosis.

 

[Bliz]

Nightwolf - so you had a clean EMG and they said its PBP? That is just not possible...so the are suspecting PBP from my understanding but have no proofs..
With clean EMG, you cannot have MND at this time..

 

[mazzi]

Nightwolf , if you get your diagnosis because of a "dirty" emg which showed only fasciculation and apparently a foot drop, look immediately to get a second opinion! Do you have any ALS clinic near you? who gave you the diagnosis was an ALS specialist ?