Worried about undiagnosed ALS with Fibromyalgia

[Guest]

I am 46 years old with symptoms for 8 months. Started with a feeling of stiff ankles and feet on waking which would subside quickly. Then I developed what I called "keyboard and txting dyslexia" where I would have trouble typing and texting and wrists and fingers didn't work. Initially presented at ER with what I perceived as numbness in feet to knees and gloving in hands... in hindsight can tell it wasn't parasthesia. Also had a feeling my head would fall of my neck and disequilibrium. Barrage of tests, MRIs PET scans (previous breast cancer) and suspicion of paraneoplastic peripheral neuropathy. I know I had brisk patella reflexes, 3 beats of clonus L foot (apparently accepatable as normal) and absent deep tendon reflexes abdomen (had 4 surgeries though). Long story short, no diagnosis, normal NCT and lumbar punctures ruling out MS. Since then, progressive perception of weakness from knees down especially, stiff calf muscles when driving, muscle fatigue in repetative hand and wrist work - beating eggs etc. Started on Effexor as most think psychological... no surprise when you think you will die and leave your children. Now muscle fasciulations mostly both legs knees and below and occassionaly arms. Used to power walk for hours, now get very tired after 1/2 hr stroll.
Have all documented trigger points for Fibromyalgia and hope like hell that's what it is but the knowledge that this has progressed is of concern. Have a neuro follow up in 2 weeks - will be 5 months since originally seen. What "patted on the knee and told to cheer up by original neuro, I didn't have ALS, but I am worried he based this on the feeling of sensory symptoms which have now turned into constant pain and stiffness.
Ridiculous thing is I should just wait the 2 weeks... old story ... waiting is the worst thing. Thanks for your consideration

 

[Guest]

Re: Worried about undiagnosed ALS

Hi feebee, and welcome to the forum. As you know, ALS presents with weakness and sometimes stiffness, but generally not with numbness or nerve pain. Now it sounds like you are thinking that your earlier symptoms really weren't parasthesia. But you have to be careful about trying to fit your experiences into a diagnosis. You don't want to fall into the trap of thinking, ALS doesn't cause parasthesia, so what I had earlier wasn't parasthesia, so I might have ALS. Once you focus too hard on a possible diagnosis it becomes easy to interpret everything in terms of that diagnosis. Plus you find yourself experiencing other symptoms that fit with what you expect. It is a vicious circle we have seen here a lot. I'm not saying this is necessarily what is happening to you but it is something to watch for.

Another difference in your case is weakness starting in both arms and legs. It is more usual for ALS weakness to start just in one area. Generalized weakness would point away from ALS. If you do continue to feel weakness you should press the neuro for an EMG test. Some people find it painful but in my case it was not bad at all. This is the best test for looking at the kind of nerve weakness from ALS.

I'm sorry you are feeling poorly and I know that the waiting is hard. We have all been through that uncertain waiting period. Some members have gone for months or even years like that unfortunately. Hopefully at your next appointment you can get some good information and make progress towards a diagnosis.

 

[Guest]

Re: Worried about undiagnosed ALS

Hi Halfin and thanks for such a quick and comprehensive reply. Isn't the constant worry about a dreadful outcome the most physcially and mentally debilitating process, and as you quite rightly say, often reinforced by taking on any symptom that you may read about! I guess our internet searching is always about trying to prove to ourselves we DONT have whatever it is that we dread.... and then end up finding stuff that simply convinces ourselves that we do!
Neurological conditions are difficult to diagnose when they don't fit into the square. I am grateful to have the follow up neuro appointment which I guess should detect a progression of true weakness as opposed to perceived weakness if in fact it exists.
I appreciate your support and I thank you for your kindness. I will let you know how the appointment turns out.
The other thing I guess you see alot here is GUILT. People looking to those who have been through the horror of the diagnosis to support those terrified of getting it.... seems selfish and unfair but that is over ridden by desperation.
You sound a very empathetic guy and I really appreciate your response. Thanks.

 

[Guest]

Re: Worried about undiagnosed ALS

No, waiting for a diagnosis is not the worst thing. Waiting to die from a fatal disease is the worst thing.My advice is to just be darn glad you don't have ALS. Forget about it and live your life. Turn off the computer and take a walk around the block. I would love to join you.

 

[Guest]

Re: Worried about undiagnosed ALS

Hi Madison,
Gosh I am so very sorry if I offended you, or was insensitive... I sure didn't intend to be. I know that there can be nothing worse than having the diagnosis and then living with it... again the basis of the my fear of leading up to it and not really being sure I haven't had a "lets wait and see what happens over the next 6 months and reassess". I have had so many people say ... go for a walk , stop looking for answers... trouble is going for walks becomes more and more difficult and compounds the fear. I truely wish you every joy you can take out of what is an overwhelmingly bad situation and promise that I feel very deeply for what you go through. I'm sorry again if fearing this without a definite diagnosis is disrespectful... that is where the guilt comes in. All my deepest thoughts and blessings.
Feebee

 

[Guest]

Re: Worried about undiagnosed ALS

feebee, please don't jump to the conclusion that you were prescribed Effexor because someone thinks it is all in your head. Effexor and similar drugs help you cope with distressings situations such as this. Yes, waiting for a diagnosis is very stressful and you need all the help you can get.

Northern Dancer

 

[Guest]

Re: Worried about undiagnosed ALS

Thanks for your understanding. Can I ask please about muscle fasiculations as the onset and progression of these is one of my major concerns as I didn't have them at my original neuro consult. I now find that I thought they were random initially, but now definitely notice that after extending my knee, when I relax it there is regular localised fasiculation in my vastus medialis (just above the inside of my right knee). This is not evident during contraction but immediately on relaxing the leg, so appears to be provoked by contraction. Thanks

 

[Guest]

I am 46 years old with symptoms for 8 months. Started with a feeling of stiff ankles and feet on waking which would subside quickly. Then I developed what I called "keyboard and txting dyslexia" where I would have trouble typing and texting and wrists and fingers didn't work. Initially presented at ER with what I perceived as numbness in feet to knees and gloving in hands... in hindsight can tell it wasn't parasthesia. Also had a feeling my head would fall of my neck and disequilibrium. Barrage of tests, MRIs PET scans (previous breast cancer) and suspicion of paraneoplastic peripheral neuropathy. I know I had brisk patella reflexes, 3 beats of clonus L foot (apparently accepatable as normal) and absent deep tendon reflexes abdomen (had 4 surgeries though). Long story short, no diagnosis, normal NCT and lumbar punctures ruling out MS. Since then, progressive perception of weakness from knees down especially, stiff calf muscles when driving, muscle fatigue in repetative hand and wrist work - beating eggs etc. Started on Effexor as most think psychological... no surprise when you think you will die and leave your children. Now muscle fasciulations mostly both legs knees and below and occassionaly arms. Used to power walk for hours, now get very tired after 1/2 hr stroll.
Have all documented trigger points for Fibromyalgia and hope like hell that's what it is but the knowledge that this has progressed is of concern. Have a neuro follow up in 2 weeks - will be 5 months since originally seen. What "patted on the knee and told to cheer up by original neuro, I didn't have ALS, but I am worried he based this on the feeling of sensory symptoms which have now turned into constant pain and stiffness.
Ridiculous thing is I should just wait the 2 weeks... old story ... waiting is the worst thing. Thanks for your consideration

:x:-( I am so sorry that you are waiting for a diagnoses, I hope you don't have ALS because that is a progressive death sentence .
That is good that they ruled out M.S. which is a very bad thing which puts many in a nursing home and live for ever that disabled.
it it is stress causing the problems consider yourself luckey because with the right
medication it can be fixed., that will certainly be better then having ALS a progressive killer which sucks.
What ever it is I hope the very best and that you have good family who will help you whatever you have, I know the waiting is the worst part.::-(

 

[Guest]

Hi, wheels.

Welcome to the website.

I hope you aren't expecting an answer of any kind from feebee because that user hasn't logged in to the site for ten months. When looking through the posts here, it's always a good idea to check the date of the post you are reading before replying to the post. It can be frustrating and sometimes embarrassing to expect a response from someone who doesn't participate here any more.

 

[Guest]

Hi, wheels.

Welcome to the website.

I hope you aren't expecting an answer of any kind from feebee because that user hasn't logged in to the site for ten months. When looking through the posts here, it's always a good idea to check the date of the post you are reading before replying to the post. It can be frustrating and sometimes embarrassing to expect a response from someone who doesn't participate here any more.

Thank You For Telling Me