Back for reassurance?

[Merepage]

I posted in December after 2 clean EMG's and normal exams. I have had widespread fasics since Sept and perceived weakness. A 3rd normal EMG and exam on Jan 30 by neurospecialist. I said goodbye to ALS and tried to move on. Last week my legs and arms feel like lead. No loss of strength in feet but the heaviness in my legs is remarkable. Still have fasics and diagnosed with small fiber neuropathy in Feb. Bottom of feet more numb everyday. Is this slow progression of MND? Please reassure me that it is not ALS. Does the added leg weakness make you reconsider ALS 6 weeks after normal EMG? Thanks for your support

 

[vickim]

What did your dr say? You need to listen to the dr. Maybe seek some counseling and get some meds for anxiety/stress. I thought you were getting better and had finally moved on.

 

[CathyP]

I have neuropathy & numbness in my foot from diabetes. ALS "limb onset" would have started with ONE limb. If I had 3 CLEAN EMGs I would be doing the happy dance and shouting from the rooftops!

 

[pearshoot]

i also have neuopathy in both feet completely unrelated to als so get up on a rooftop and follow cathy's suggestion

 

[Nighthawk]

Clean EMG means no ALS.

What you might have is some kind of Neuropathy which is never fatal and can be treated.
Just calm down and enjoy your life.

 

[notme]

NO, you don't have ALS...you have a neuropathy which can be painful in and of itself. How are they treating it? there are meds you can get to help with the discomfort.

As for the muscle fatigue--it's common in neuropathies. Uncomfortable and such--but at least it's not deadly. You dodged the bullet...let ALS go and treat what you DO have.

 

[notme]

Off to mod land.

NO you don't have ALS. What you DO have is what's causing your issues. Please ask for something to help with the discomfort you're having.

 

[Merepage]

It's just that I have had a slow progression of weakness for 6 months. Now I have to think about walking. Everything feels 2x heavier than 2 weeks ago. A little dizzy.. Where do I go from here? Blood work good, Neuro fine, rheum fine, lyme neg, thyroid fine, all muscles weaker every day. If I do nothing, I will be in a wheelchair in a week or two...where can I get an answer? Any ideas or suggestions? How can this not be neuromuscular?

 

[vickim]

It may not be weak ness you are feeling but fat igue. Anxi ety and stres s can make you feel this way. You have had tests that tells you everything is no rmal. maybe you need to seek some coun seling and meds for the anx iety.

You can continue on the path you are on going to dr after dr and be told the same thing or start a new path and listen to what the drs are telling you. I think you are making yourself sicker with anxi ety, it is a true medical problem, have any of the drs suggested this?

It took 5 years to get my diag nosis but I had ab normal emgs. No one can answer your questions, only you can, it depends on how long you choose to feed the fear. I am sorry you find yourself in this situation and I will pray for you to find peace.

 

[Merepage]

Thanks Vickie. I hope you are right. I have been in counseling and on low dose lexapro. I have such a hard time trusting doctors...especially when they have different opinions. The EMG just confuses me. I cant imagine that the neuromuscular specialist would practically kick me out of her office if there was a chance that she was wrong...then my body keeps failing me..This has been going on for over a year, beginning with a bad cough. Can't believe my body just won't get back to normal. Fear is horrible. Taking one day at a time. Thanks Vickie

 

[pearshoot]

if you are a diet soda drinker QUIT (aspartame)

 

[vickim]

Thats all you can do... one second...one minute...one hour....one day. So along as that time is productive and joyful. You are in control of that, only you. You are brave and strong....this is a hurdle you can jump over. Trust your drs...trust yourself....believe.

 

[mummy24]

It sounds like everything could be down to anxiety, dont underestimate the power of the mind....any clinical weakness would be detectable in a neurological exam.

Believe me if there is a serious problem they will notice in your exams, I've been through it all. Unfortunately I have clinical weakness in my toes among many other abnormalities that my doctor picked up on within the first hour of meeting me.

Please stop worrying about als. You do not have ALS.

 

[Merepage]

I understand if you all write me off but here are the reasons I cant let go of this..google both arms and both legs weak and fasciculations and 10 ALS websites come up. Google cleanEMG = no ALS and people post " I had clean EMG and have ALS". But biggest reason is how I feel. So fatigued.. Muscles twitching and everyday
My arms and legs more tired. Can't work out. Harder to climb stairs. So trust the EMG fro
Oct 12, Nov 12 a d Jan 30 and chalk it up to Lyme or anxiety? I just need a concrete diagnosis. I need to get off this merry go round. Why can't I trust the you, the tests and the drs ? Sick everyday for 15 months. Just tired... Grrrrr. Thanks for listening

 

[ottawa girl]

What has your counsellor advised?