It's been 8months...

[Faith_7]

Hi there,

I started a thread about what I was experiencing in Jan of this year, however that thread was closed for some reason.

To re-cap, I'm a 29yr old female who started noticing symptoms from Sep 2012.

My left arm still feels weak (it shakes when lifting a kettle or a plate). My balance I feel is getting worse, my speech feels/sounds thick with me constantly clearing my throat & having phlegm in the throat. I feel as though my grip in my left hand is not good, can't pinch things up. The fasics settled a little for a month however they are now more prominent - mainly effecting L arm & L foot/calf. Have also noticed extreme sudden jerks during the day.

My last neuro appt was March 2013, she brushed me off as an anxiety head case. - my EMG in Jan 2013 was normal. I know something is wrong, I know my body very well & am well aware that what I'm experiencing is real. I have lost muscle mass in my L hand & wrist area (rings are too big to wear now & watch is very lose).

I need someone's advise please! My life has been put on hold & I'm terrified. I've been trying to ignore my symptoms since my last neuro appt, but that hasn't helped - I am slowly progressing.

What to do? What do I have?

Faith

 

[JustTrying]

Make an appt to get a second opinion. Try an ALS clinic if you truly feel that's what you have. Good luck.

 

[Cricket]

I second what justT said. Best of luck

 

[ottawa girl]

I agree with JT and Cricket - I would urge you to ask your GP for a referral to another neuro.

However, I would absolutely advise you NOT to ask to see an ALS specialist. ( you could have any one of a number of curable ailments -or nothing.) So, be very careful, if you specifically request an ALS specialist, based solely on your Internet research, you will invariably be painted as an anxiety riddled person and may be (mis) treated accordingly. Sad, but true.

Let's be honest, you had a clean EMG and most people don't jump to thinking they have a fatal disease. Did you indicate to the last neuro you suspected ALS? If so, maybe that's why she blew you off instead of looking for answers.

Explain to your GP that your symptoms are getting worse and you want/need a second opinion for your peace of mind and to get answers. Ask your GP for a neuro who will take the time to listen and hear you.

 

[Faith_7]

Thank you for your responses.

Yes, I did tell the neuro that I thought I felt I was showing signs of a motor neuron problem. I've seen a total of 2 neuro's since last year Sept 2012, all with them scratching their heads.

Does anyone think that all these symptoms could be something other than ALS? I have read quite a few posts/threads with the way Bulbar starts off, and I hate to say it, but I feel I may have this disease.

Should I be having another EMG? It's been 6mths since my last test. I have asked my family members if m speech sounds funny to them - all responding no. I feel as though my mouth muscles aren't strong, as I tend to drool if I'm not concentrating on keeping my mouth closed.

Faith.

 

[vickim]

I agree with all of the above responses. I would keep a journal listing all your problems with dates. Keep track of when they start, stop what you were doing, how long it lasts and so on. Don't go in with an idea of what you think you have. Let the dr do their job. They know far more than we do. They know the correct tests to order. Answer their questions and listen to what they say. Keep notes. Be patient it takes time, lots of tests and some times progression before things can be narrowed down.

In the mean time don't let this take over your life. Whether the out come is good or bad, fretting and worrying isn't going to change a thing and all you have done is waste time. I know easier said than done, but we have all been in your shoes. Some it takes months, years and some are still waiting.

I like your name...Faith...that's what you need to have. Faith in the drs, faith in yourself and faith in the powers that be. take the bull by the horns, you can let this take over your life or you can learn like we did to work around it, over it, under it and do whatever it takes to keep moving forward.

 

[ottawa girl]

Faith,

We gave you opinions yet you persist in asking questions no one here can answer. Please re-read the near 7 pages of replies you got last time. Many here tried to help and support you. Notme can barely use her fingers yet she did her best for you. What are you doing for yourself?

No one notices your speech issues - that's very telling. ( no pun intended)

You told neuros you suspected motor neuron disease - they went to school years and years - they tested you.
Who do you believe?

Please, please, call your GP and have a heart to heart chat. You won't be sorry. Truly. I'm not saying you should stop seeking answers, but you are, I think, looking in the wrong places. Vicki said it best in the final paragraph of her reply to you.

 

[Faith_7]

Yes, you are all right. Thank you for the heart felt advise. There is no point me going on and on about what you all think it may be, the doctors know best and I must listen to their advise. I guess, I'm in denial and want to hear that "I don't have anything".

vickim - Bless you and thank you. My prayers are with you all always.

I shall let you all know of the outcome once I've been given a diagnosis.


Faith

 

[Nighthawk]

@Faith_7:

It's okay to be afraid. It's okay to break down. It's okay to worry. Stress and anxiety can manifest things in your body that you never imagined possible.

I'm not saying that's what's happening, but try to keep in mind that everything could be exaggerated by what you're feeling emotionally right now. The best thing that you can do is wait and live as normally as possible until you see your Neuro. Keep in mind that your symptoms might be caused by many things. Be strong! Let the Doctors do their job and try to stay focused on everything but your symptoms until you talk to them.





Carlos

 

[paul71]

I kept a journal for 6 months, logging all my symptoms and daily activities. Part journal / part diary.

But then I started thinking... When I was healthy, did I keep a journal? No.

I think journals have a downside. Yes, it's good to track symptoms. On the other hand, I think that keeping a journal can lead to over analysis. An empty page wants to be filled. So we focus on every little ache or twinge and write it down.

So I said screw the journal. It was just a reminder of me being sick. If there is any element of my condition that is between my ears, I want to tune it out, not pour gasoline on the fire by keeping a journal.

 

[affected]

I think journals can be useful. BUT if you are going to log every little detail of every single day into it, then yeah it's not maybe so healthy.

In the time when we were baffled at what was wrong with my PALS and were going to different doctors who either knew what was wrong (and were not even close) or who had no clue, it became harder and harder to start telling the story over again. Especially with the bulbar issues my PALS has.

But even without that, it was laborious, and we would say stuff, miss stuff, back track etc.

So one day we sat down at the computer, and we began to put it into text. It took a couple of hours, but we had the story straight from definite symptoms, who we had seen, tests and their results, treatments that were tried, and even things we weren't sure at the time were connected.

Suddenly, when we were referred to a new specialist we could hand them the document and they had an overview very quickly and could put it on file.

When we got to the point where we went to a speech pathologist, she listened to him say only a very few things, read half the history we had written and looked us in the eye and said, I believe this is MND.

She then organised our appointments with an ALS clinic and an expert neurologist and again, for him to read that history and check my PALS over, it was easy for him.

We just update that document every few weeks or so now, more for our own interest in how he is deteriorating, but it really was useful when in the stages of trying to find out what was wrong.

 

[Faith_7]

Hi all,

The earliest I can see a neurologist is 3mths! I thought that in the mean time, I should jot down a few things to prepare myself for the consult.

Just wanted to ask how to explain to the neuro a few of my symptoms, such as...when trying to do excersise & I use my arms, the left one especially shakes & when holding a kettle that is full of water. Do I call this weakness?

The twitching I get which is now constant in my L calf & under my foot, looks like popcorn being popped under the skin. Would I say that these are fasics?

 

[Nikki J]

Hi
No just describe the symptom as you did above putting a name on a symptom will just have the neuro asking what do you mean by that word

 

[vickim]

I agree with Nikki, using all the big words will not work. Just describe what you feel and the dr will ask questions. You just answer them. Be sure and write down what you were doing when it came on , how long it lasted, and so on. that is what they are going to want to know.

Keep an open mind, dont' hone in on als, it could be anything at this point. All these diseases mimic each other and it is hard to pin down. It will take time so dont' get frustrated about how long it takes.

 

[Grateful]

Faith

I think the problem is encapsulated by your statement that 'I'm in denial.'

As far as I can see, anyone who has visited that number of neurologists in such a small period of time, is not 'in denial' of there something being wrong with them.

They're in denial of the possibility that they do not have ALS. That is a very different kettle of fish; and you can carry on being sure that you have ALS till the cows come home but it will not help you. The only person who can help you is you getting help for obsession with this disease.

I wish you the best of luck...