don't know what to do now...

[nightwolf_mk]

Hello. I've been suffering from cramps and fasciculations for 2 years now. Until some weeks ago I didn't have any weakness, but now I have it on my arms/shoulder and some atrophy, despite my "clear" emgs (they showed fasciculations but no other signs). I'm almost diagnosed and I'm so scared. I'm just 26 years old and I've never thought that I could have such disease at this point of my life. I'm desperated and don't know what to do.
I'm sorry because I know that are so many people here that lives with this disease and in my point of view all of them are heroes, but I think I don't have the strength to fight against this. Sorry, but I needed to say something to someone because I'm very depressed.
Sorry about my english too, it's not my main language.
God stay with you.

 

[Danijela]

Hi there. Sorry to hear about your fear and depression. What do you mean by "almost diagnosed"? Has a neurologist given you a diagnosis or are you still undergoing tests? D

 

[nightwolf_mk]

I'm waiting for diagnosis... The neurologist didn't say what he thinks and just want to wait before make any diagnosis, but as my symptoms are worsening and all the other negative tests it is the only possibility now...

 

[BethU]

Hi, Nightwolf ... I'm so sorry you are going through this stressful time. Waiting for a diagnosis is very nerve-wracking.

You say that ALS is the "only possibility" now, but if your neuro wants to wait before making a diagnosis, that means there ARE other possibilities he is considering. If he had exhausted all the possibilities, I think he would have told you so. Neurologists don't withhold this kind of information (a probably diagnosed) from a patient without a reason.

I certainly hope it is not ALS, and at your age, the odds are good that it's not. I'm glad you found this forum. Please let us know what happens and ask any questions we might be able to help you with. When is your next appointment?

Hang in there.

 

[bufbon2]

Hi Nightwolf, please know that it is OK to be afraid, all of us are in the beginning. Whether patients or family, we are all afraid of what we do not know and what might lie ahead. However, we later find, as I'm sure you will to "IF" your diagnosis is ALS, that we draw courage from deep down inside our hearts. Your Post wished that "God stay with us"...you do know he is with you right now and will be forever? Again "IF" your doctors find you have ALS, be assured life goes on! We live in a such a wonderful age of technology and advanced medicine and care that you will go on for years to flourish and be active in the day-to-day workings of life. My brother has had ALS for 20 years, he was diagnosed at age 28. He drove his Beretta and went to the beach through whatever means. He uses his computer to shop, write letters, watches movies on his very large home theater and has the prettiest nurses taking care of him! He has watched his many nieces and nephews come into this world, his two sisters get married and just celebrated our parents 50th Wedding Anniversary. Of course with another hot nurse at his side feeding him and helping him to sip champagne....only a little bit of course to toast the bride and groom! I'm his personal shopper, guardian, adviser..."his little sister" as he still calls me. So be strong, stay optimistic, chase away the fears knowing that God is with you, no matter what! In fact, he is giving you a big hug right now!

Peace and blessings

 

[nightwolf_mk]

Thanks for the comments. I had another EMG and it showed "only" fasciculations and didn't show signs of denervation. The doctor said that my diagnosis is BFS (benign fasciculation syndrome). As far as I know this condition doesn't show weakness and atrophy, but the doctor said that I don't have atrophy and I don't have "true" weakness. Well, I don't know, I think my only option is wait to see if something will change. I have this strange symptoms for two years now and it all started after a thyroid surgery followed by an infection. Anyone here was diagnosed after problems with thyroid? The doctor said that he believes that is something metabolic, although all the tests to detect this came back negative, but he said that are many metabolic diseases that can show theses symptoms and it will be hard to detect which is in my case.
When I take magnesium pills and drink tonic water the fasciculations decrease for some hours but after that they return. I had some magnesium tests and it came back normal too. Someone diagnosed uses magnesium to treat fasciculations? Other thing that happens to me is when some muscle are having fasciculations, I move that muscle and during movement the fasciculation stops. The doctor told me that this is one more sign that it is benign, because on ALS the fasciculations continue during movements. Is this true? Sorry about the questions but all of this is new to me.
God stay with you.

 

[crystalkk]

High nightwolf,

Sorry that you are suffering. It is very scary, but please don't diagnosed yourself. the anxiety and stress will cause the symptoms to be 10 x worst. How is your nuero exam, are your reflexes brisk?

Have you had your parathyroid checked? Sometimes in thyroid surgery they accidently remove them and you don't even know it until symtoms appear. Have you been to a good endocrinoligist?

 

[nightwolf_mk]

I have brisk reflexes, but the doctor said it is normal for my age. My thyroid and parathyroid was tested some times and it is normal too. They don't know what is happening to me, but the doctor told me that is not ALS and it is BFS, but I think that could be als but is not at the point to get diagnosed, although I have three emgs and all of them showed only fasciculations, but I read here that is not enough to rule out and there are some cases where fasciculations were the first sign. I'm trying to be strong, but is difficult, specially if I think about my future, I'm not married and if I have it probably I'll never be and will never get children and this makes me feel too sad. Thanks for all your support.
God stay with you.

 

[agneta526]

nightwolf mk,

I had a complte thyroidactamy Feb 2006, they also removed 2 parathyroids. 6 weeks after the surgery, my right leg started to "drag" very little. Gradually it got worse,painful, cold etc and Dec 2006 tmy legs collapsed. After tests and numerous doctors I just got diagnosed with ALS before THanksgiving 2008 plus bulbar onset. Am walking with a walker plus a brace, and am trying to cope. THis is the first time I post anything, hope it works. Agneta

 

[BethU]

Hi, Agneta ... welcome to the forum. I'm so sorry for your diagnosis, but hope it will be slow progression. There are many people on this forum who have lived many years with ALS. They help us all with guidance and support through their experiences.

Please ask any questions or concerns you may have.

Take care.

 

[nightwolf_mk]

Agneta, I'm sorry about your diagnosis and I hope that your case progresses slowly. I think that maybe there is a relation between this disease and the endocrine system, who knows...
In my case I have some weakness and it seems that my voice is changing too, but I'm not diagnosed yet. I think it's just question of time. I'll put all of you in my prays.
God stay with you.