Old 07-05-2018, 01:55 PM #1 (permalink)
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Default The waiting game

I do not have a diagnosis, I have had ongoing neuro problems since I was 30 I am now 59, I suffered with weakness in my legs mostly on and off. This would seem like MS, after many neurologists nothing concrete so I have learned to live with it.
Going on 2 months now I started with muscle twitching mostly in the arms followed by constant weakness, weak neck, hoarse, strained voice and some breathing issues. The fatigue is like never before. I struggle to make it through the day.
Every blood test done, cardiologist , internist all normal.
Waiting now to see the local neurologist . Of coarse I now worry about ALS.
Hope this is ok to share.
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Old 07-05-2018, 02:06 PM #2 (permalink)
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Default Re: The waiting game

Your post was moved as you are undiagnosed. Please read the post on this subforum entitled read before posting
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Old 07-05-2018, 02:14 PM #3 (permalink)
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Default Re: The waiting game

Sorry, I just signed up today, not familiar with how it works. When you say the post has been moved do you mean taken down completely?
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Old 07-05-2018, 02:24 PM #4 (permalink)
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Default Re: The waiting game

sorry again found what you were referring too, I will not post again unless diagnosed
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Old 07-05-2018, 03:42 PM #5 (permalink)
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Default Re: The waiting game

I hope the sticky post addressed your concerns. Let us know what the neuro says
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Old 07-06-2018, 11:37 AM #6 (permalink)
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Default Re: The waiting game

the neurologist I'm seeing is local here in a our small town, I really wanted my doctor to refer me too McMaster in Hamilton but he would not do it, the first neuro he referred me too the appointment was not until Jan 2019, I cant believe they would make someone wait that long. I'm terrified as I feel myself getting weaker as the weeks go on. I also worry that I will lose my job for most days I can barely make it through the day.

I know a diagnosis will not make me feel better but at least I can make some decisions about working and saving energy for other more important things. All I know is that something is terribly wrong with me.

the only person who knows how I am feeling is my wife and she is a terrified as I am.
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Old 07-06-2018, 11:53 AM #7 (permalink)
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Default Re: The waiting game

I am not clear. You have seen no neuro yet and your appointment is January? If so and you feel significantly different return to your gp

I am well aware of waits to see specialists ( they happen here too though worse in the UK and Canada). However members have found that the person who referred them if really concerned can and will speed things dramatically. Of course the gp can only ask when they see a real medical urgency.

Your gp knows you and can see what is happening. They will be your best advocate if needed
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Old 07-06-2018, 12:24 PM #8 (permalink)
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Default Re: The waiting game

I have not seen a neuro yet, the first appointment they called me with was for Jan, when I told by gp I could not wait that long they made another appointment with a local neuro for next Thursday. My concern is this local neuro will probably end up sending me to a larger center anyway. I know I need to be patient and wait for these appointments I'm just scared and want answers.

thanks for listening and your help
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Old 07-06-2018, 12:31 PM #9 (permalink)
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Default Re: The waiting game

If the local neuro sees the need they will have more clout to get you into a specialized neuro. They may also be able to order appropriate tests so that if you do have to be referred onward the second neuro will have more information to work with.

Look at this as likely speeding things. I believe in Canada you do not have astronomical copays and deductibles as many here do? In the US just paying for a visit can be burdensome
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Old 07-06-2018, 12:50 PM #10 (permalink)
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Default Re: The waiting game

Yes I hope this neuro makes the right choices for testing. I don't even think they can do an EMG in this area I will probably have to go of town and who knows how long the wait for that will be.
Yes the costs are cover here in Canada, the trade off is the wait times I guess.
How long did it take for you to get a diagnosis?
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Old 07-06-2018, 01:25 PM #11 (permalink)
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Default Re: The waiting game

I am FALS. I was already hooked into researchers. Most people are a number of months here. I did have to wait several months to be seen by the clinical neurologist and that was with abnormal tests in hand
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Old 07-06-2018, 05:09 PM #12 (permalink)
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Default Re: The waiting game

Again I'm very new to this,I always followed MS because I thought that was what I would end up being challenged with. When you say FALS does that mean that other family members have had it and you have the gene?
I know most people on this forum are very ill and don't have the energy to answer uneducated questions, so if these question are a burden please let me know. I will if diagnosed educate myself and try and help others.
Thank you for your help
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Old 07-06-2018, 05:31 PM #13 (permalink)
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Default Re: The waiting game

Yes it means familial ALS and I am the sixth member of my family in my lifetime to be affected. I knew I had the gene mutation
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Old 07-06-2018, 05:52 PM #14 (permalink)
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Default Re: The waiting game

David.
As you can tell I'm in Ontario too. I understand your concern with the wait, but take it in stride. I'm waiting to see what your neuro appointment brings up. Keep asking the doctors questions, and do let us know how it goes.
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Old 07-06-2018, 06:05 PM #15 (permalink)
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Default Re: The waiting game

Hi Angie, thanks for reaching out. Comforting to find someone who is close,sorry that it is under these circumstances. The neuro appt is this Thursday not sure what to expect,I know I need answers even if they are not what I want to here.
I can't believe this is happening to me ,but I will deal with what I have been given.
I hope you can share more info about your life with this affliction.

David
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