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Hopeful lives

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I hope someone can shed some light, as it would be greatly appreciated. I'll try to be concise. Started having a globus feeling in throat at end of Dec 2014, went to dr prescribed reflux meds. No improvement and then to ENT for scopy and then Bariumswallow and modified barium and lastly esohpagram with gastrinologist. Nothing of significance found. About three weeks into these problems some weakness and awkwardness in legs walking. Also sent to rheumatologist with no significant findings other then Positive ANA 640. Have had every blood test done imaginable with no findings. Have had MRIs, Echo, and pulmonary tests. Two to three months into problem worse feelings of weakness in legs and feels disconnected when walking very hard to describe. Feel a swaying sensation when walking or standing. Have seen neurologist that performed EMG and nothing found. Also having fisiculations at about two months into sypmtoms and they are now more spread out and frequent. I will also add that I've always had a raspier voice, but people had been asking if I was short of breath leading up to these symptoms. My dr gave me Mg meds suspecting it may help, because my dad was diagnosed a few years back and responded well to meds. I however didn't have any MG symptoms other than globus and after eating feeling like something is still in my throat. I have had three appts with this neuro and he has asked me to please not bring up ALS as a concern. I told him I need an explanation for the increased weakness and difficulty walking I'm experiencing and the weakness in my arms especially my writing side. Also the fasics I've never had before two months a go and losing 20 lbs with throat issues. I took it upon myself to go for second opinion at ALS clinic. There about a month after first EMG another was performed. It also showed nothing. My first neuro saw the fasics today, but didn't say much except they can happen. I get them in most places of my body including my lips. The ALS specialist is running some different blood work and is getting back to me this week with anything she may find. I'm so confused, because although I've read of others having great difficulty with walking, I haven't heard it described the way I'm experiencing it with the disconnected feeling. My dr says be glad I'm not telling you you have ALS. I asked what he attribute to these problems and he said he doesn't know yet. I'm not scheduled to see him again until June 24th. My walking is also very slow and I have to watch my balance. I'm so confused and any insight would be greatly appreciated. I'm going to see a counselor, so I can have someone listen to my frustrations I'm so concerned. Also is it possible for me to be having the weakness I feel, and still have dr tell me I'm passing strength tests. Also when asked why these fasics are happening the dr repliesd this happens sometimes in your 40's and 50's? Wake up every two hours during night too.
 
Hi
did you read the sticky?

I am afraid we can't help you at all.

You have NO ALS symptoms and you have already been told that by neurologists.

You feel weak but have no clinical weakness and you don't show bulbar symptoms.

All the best finding your answers but as your doctors are saying clearly - congratulations you don't have ALS. They would not have missed it on the tests they have done.
 
Tillie, I did read the stickies, but I was really hoping someone could give me some insight on what could possible be going on with my body, as I've never had problems like this ever. I don't have a lot if faith in drs after being given the MG medicine with out symptoms of MG. My walking is so disconnected and I just wanted to know if this was familiar to anyone.
 
Hopeful you are on an MND (ALS) web forum.
We know ALS but don't know "non-ALS" diseases and so cannot help you.

Work with your doctors.
 
As Greg said - this is an ALS forum.

Anything else is beyond us, we have enough on our plates dealing with this terminal disease.

Good luck elsewhere, I say that sincerely.
 
This is why I'm so confused. Please forgive me as I'm only trying to get answers. I thought swallowing problems and weakness and instabilty problems walking could be ALS along with fisiculations. Do you have any recommendations of where I should seek answers.
 
This is why I'm so confused. Please forgive me as I'm only trying to get answers. I thought swallowing problems and weakness and instabilty problems walking could be ALS along with fisiculations. Do you have any recommendations of where I should seek answers.

If it was bulbar swallowing issues (which yours are not), and if it was clinical weakness (which yours is not) then it could be ALS symptoms. You don't need forgiveness, we are just answering honestly mate.

Sorry, maybe try a health anxiety forum is the best I can suggest.

over and out on this thread
 
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