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JustTrying

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Just reaching out. I'm waiting for my final MRI then second emg in October. Emotionally, I'm not doing so well. Like I told my husband, I could handle the weakness if I knew it would improve but since it keeps getting worse and slowly moving to other spots, I cannot mentally handle it.

I'm just looking for others with very concerning symptoms who are undiagnosed and waiting. Maybe we can support one another.
 
I am with you. Same story with weakness. My hands are slowly deteriorating. Anxiously awaiting a date for MA General. I have found that focusing on the present helps me. Trying to enjoy moments and time with the family is a good distraction. I will PM you. Hang in there.
 
Same here, supposedly diagnosed with small fiber neuropathy, but when you are weak "all over" including torso and throat, tongue and neck it is hard to believe. Also breathing/chewing and swallowing problems. I have exhausted all mean of neuro appointments unless I go somewhere else other than Wash U in St. Louis, MO (which I have been five times and had exhaustive tests run). I am going soon to a local GP that attends my church just to get his opinions. I feel like he will do some "hands on" tests, even though he isn't a neuro muscular specialist or neurologist (which I have seen in St. Louis). My own GP doesn't hardly touch me when I see him. The continued and evolving weakness/fine grip problems, etc. is - no words for it. Hang in there also.
 
I am definitely trying to do day to day. When is your MGh appt?

This is hard :(
 
Sorry to hear, Larry :( the swallowing and breathing problems are what freak me out the most. How long have you been weak and had symptoms?
 
Hi,

I have a diagnosis but they are still testing me for other things and so I guess I am still in limbo also. I have been finally having some good days after many months though so I am hopeful. Even though I still do have muscle twitching, muscle tiredness, perceived weakness, some trouble swallowing (I believe my throat gets dry on one side) etc. My symptoms started with weakness during a virus/infection. My doc found out I had severe Vit D deficiency. They have been unable to correct it despite high doses of D. So now they think I have Celiac because of not absorbing the D, so I am testing for it. I am so glad I have had some improvement in my leg weakness (I was having trouble walking for quite a while). I have seen a neuro and a rheumatologist. My neuro diagnosed me with post viral fatigue/ME after my EMG came back normal..

Hang in there, I know it is so distressing to have these symptoms and not have a concrete answer or any treatment even..
 
Since Feb 2012 but it just continues. It does make you very uneasy for sure.
 
Not me any more....:(
 
I was eager for a diagnosis, until yesterday and now believe ignorance is indeed bliss...i have to take my wife, of less than a year, with me next time to receive the m.n.d. diagnosed...he called it an untreatable, worsening anterior horn cell disorder and kind of prepared me for the next visit..can't stop crying for ruining my wife's live.I'm so sorry Doris.x.x.x.
 
@veggiepete I'm a little confused

How do you know the next visit is a diagnosis of MND? Do you have a date for this visit?

Did he tell you this by phone or at last visit or something? I'm sorry I'm really just struggling to get my head around how you know this.

I can tell you that I can completely sympathise with you being in a new marriage. Same here, my PALS noticeable bulbar symptoms started about one year after we married ... I am still SO angry that we were given so little time of freedom.

But I'm still here with my husband and have no intention of anything else, it is tough and I do really feel for your situation.
 
Hi..affected...I went friday and he described it as anterior horn cell disorder.untreatable and worsening..wouldn't call it mnd then without my wife present..he said one other thing it could be was h.i.v. so given blood forms for that test but either way to bring my wife in for the results..believe me i don't have hiv, i've never been promiscuous or unfaithful in my life..
 
thanks veggiepete
So have you had those bloods done and when do you go back to see him with your wife?

I'm sorry that it's drawn out like this for you to be told exactly what is going on!
 
I couldn't deal with it after fridays appt so having it done today(monday)..i'll ask how long for the result, but doc said friday they wouldn't take long..
 
keep us updated, we are waiting with you
 
Tx Tillie..went for bloods this morning...
 
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