Should I see an ALS Specialist?

[plznotals]

Good Morning All;

Thank you for your help and advice. I want to answer a few of the questions you asked me.


I did see the rheumatologist who said no to lupus...and no to any autoimmune findings. This doctor is actually my gf primary care doctor. We have both had toxicology bloods done and no lead, mercury nor arsenic was found. I live in an apt that we painted in November... we both starrted noticing the twitching in January. My gf had a day when she had a fever and was pretty run down. I have never had a fever, but did feel nauseas for a few weeks...never threw up. Since you all say that although my symptoms seem weird, they do not seem lke ALS, I wonder what else this could be. My gp told me I have been tested up the wazoo and its a mystery to him. And me also. My apt is an older one....but to my knowledge there should not be any toxins...can still get it tested although when the symtoms started I wasnt really living there alot...and she lives in another part of town so we were only there mainly on the weekends. So, i a still searching...thanks and any more ideas would be appreciated. Have a good day and my prayers for all continue.

 

[Toto's Dorothy]

Plz,

I know we have told you not to oo gle but the yahoo answer of what can cause high A N A levels was very informative. One answer was because of a virus. Possible you both are fighting off a nasty one that wants to linger. Surprisingly though, was the answer of Ha shi mo tos. Was your girlfriends blood levels checked for A N A? And her doc tor, is he a rheumatologist or endocrinologist? Or just a PC? The other doc tors are specialized in their field and should give you better answers. Just a thought.

 

[fitzroy]

Plz,

How much work are you missing as a result of what's happening? Would your PCP support a temporary disability application? With this many generalised symptoms, any of them being severe, I'd wonder if it would be possible to get through a normal day.

I couldn't guess what's happening with you and your GF. Any combination of the symptoms you've posted could be pretty much anything. But, ANA isn't a specific marker for Lupus, nor do I think you have ALS. I think any PCP or specialist wouldn't know where to start with everything you've shared here. Focus on what keeps you out of work. What keeps you from a dinner out, or a movie or a walk?

My thoughts are you need to rethink the working relationship you have with your GP and maybe restart the process. But this forum isn't likely to be much help getting answers.

 

[plznotals]

Good Morning,

Yes, the rehumatologist I saw is actually my GF's primary doctor. She was tested for evrything and she never said anything to me about ANA for anything.

Believe me, I dont want to have any NMD but everyday, my limbs feel weak. I am still able to lift things etc, but they have a "weak" feeling that is more intense at times than others..so I am trying to understand when people say that ALS weakness never goes away. Does that mean that the weakness feels the same AT ALL TIMES?

Also, my hands are always noticeably shaky in the morning and calm a little throughout the day. Yesterday, my right hand(top) twitched all day! As I write this, my hands are shaky and the right one is in a little pain. I got a wicked shooting pain last night in the right forearm. ( I am right handed).

Again, I say, I truly do not want to have any form of NMD but these symptoms are strange.

In the very beginning of all this, I missed several days of work, mainly because I was freaking out...and felt very nasty(nauseas) and panicked that it may have been HIV. I tested for it and it was negative. Hers was negative also.

I havent missed work in a while, but each day that I twitch, have random pains in legs, arms or wherever and I have feelings of weakness throughout my body, my mind is distracted a bit. Thankfully, I have found all of you who are helping me.

SO, the search continues..but again, please try to answer this so I am clear about the weakness: Is ALS a progressive weakness? Does it start generally in only one area? Is it the same level of intensity at all times? And, if you dont think I am dealing with ALS, can you tell me why you dont think so? Sorry if my need for clarification is annoying? Thanks all.

 

[fitzroy]

You do not have weakness. You have perceived weakness. There's a difference.

I couldn't begin to tell you why I think you don't have ALS except that your whole story indicates the doctors don't think so or they'd be all over it. Doctors don't just watch as you get sicker and sicker without diving in and trying to improve things. There is no way and no point to try to get affirmation from this or any forum. I've been on medical leave for the last 18 months and I don't have ALS. If I could type, sit, stand or walk for any length of time, I'd be back at my old day job. And that doesn't even begin to cover what began seven months or so ago that brought me to this site.

Please, go back to your doctors and focus on what is truly affecting your life to get to an answer, and hopefully an effective treatment.

 

[momap53]

Weakness is NOT perceived. Weakness in ALS means that you've lost the ability to do something. Your physician can determine clinical weakness with an exam.

 

[notme]

Infections can cause a funny 'smell' from the breath--but so can a sinus infection--if you have a sinus infection you might be smelling things that aren't there.

Clean EMG=NO ALS. Since this is an ALS forum--that's about all we can tell you. It's possible you and your girlfriend have something -- but it's not ALS.

Good luck to you. Pain in wrists is most commonly carpal or cubital tunnel. Weakness in ALS isn't 'feeling' weak--it's BEING weak. If your ANA is seriously elevated--see a Rheumy.

 

[plznotals]

Thanks everyone. I am sure you get this kind of stuff all the time. I appreciate your patience. As the search for answers continue, I pray that my symptoms do not get worse...but I can tell you that my ankles and wrists feel as if something sinister may be happening. I hope they dont "drop". Again, thanks to you all, and my prayers and respect continue.

 

[notme]

Myesthenia Gravis is the most COMMON cause of muscle weakness that gets better with rest. It can be mild or severe. And, it can be tricky to diagnose as well.

It's also possible--though you probably won't believe it--that you have something totally benign but often disabling like fibromayalga. I say benign because it doesn't 'kill' anyone. just makes their life miserable if it's severe enough.

Foot drop is never normal--but if EMGs are clear--it's not ALS. Doesn't mean it's not something. Personally, I'd go get a copy of all labs that have been done--and take them to a new doctor for an opinion--but that's me. I had to go to Mayo to get my severe fibro diagnosed--and at the time, it was severe enough that I couldn't walk because my legs were literally swollen twice their size. My poor doctor knew something was wrong, but not what and sent me to Mayo.

Point is--sometimes things can be elusive--but ALs ISN'T--The tests show the problems---the hold-up in diagnosis is they rule out every other POSSIBLE cause of the abnormalities on the EMG before giving a diagnosis.

Weakness doesn't come and go in als. It comes and stays. It progresses -- sometimes slow, sometimes fast--but it progresses. Very few with ALS ever have a 'normal' clinical exam. In UMN issues only--they may have a normal EMG--but won't have a normal clinical exam.

I point this out because my LMN signs are in my arms--but my legs show ALL UMN signs--spasticity--hyper reflexes--positive babinski--but none of that says it has to be ALS. Doesn't fit the criteria of UMN and LMN involvement in 3/4 body regions.

Be glad those exams and tests are normal. Persist in finding answers if you're both as sick as you've been saying. Good luck.

 

[plznotals]

Hi, and thanks for the advice. I have thought about MG but all of the conditions are so scary and I didnt want to drive myself any crazier. But...I dont have foot drop....HOPING I DONT GET IT, OR WRIST DROP or any drops. But, they have been feeling weird last few days. Can anyone describe the feelings they had before the actual DROP? Also, I have had sooo much blood drawn...and my gastro doc even asked me for more yesterday to test for something. WEAKNESS...progressive? Can anyone describe how their weakness developed? Mine FEELS weak...so I am not sure it is actually real. The clinical exam seems so minimally able to detect it while in the docs office...but that doesnt mean its not progressing right? Thanks.

 

[Ms. Pie]

If you had ALS you wouldn't be asking how it feels. You'd know. I hope you figure out what's getting you and I hope it can be fixed. Good luck!

 

[ghost_writer]

Hello Please No ALS,

You appear to have selective hearing/understanding of what we have kindly offered. Now you are back seeking more cookies to feed your "ALS Anxiety Monster". I don't intend to offend, only help. I don't think this is all just in your head. I just don't feel you should waste any more of your time considering ALS. Have you looked into mycotoxins?

 

[plznotals]

Hi, thanks for this...it actually made me laugh...cookies to feed the anxiety monster...LOL..I have never heard of mycotoxins....but will check into it. OK, i will try harder to get this out of my mind. Thank you all.

 

[jb63]

When 2 people who live together get simialr constillation of symptoms, a common cause should be looked into . Food, life style drugs, exposure etc.

ALS is a progresive disease that does not show up overnight.

 

[plznotals]

Hi all...thanks for the help. The last few days i have been having stabbing pains in lower legs, shin muscle on left leg..very painful....forearms weak etc. One question is pertaining to EMG being normal = no als. Does it matter when EMG is done? My first symptoms of twitching was in January...with sudden weakness on left side.....now....what i feel is weakness is also on left side...arms, forearms....shoot, i even feel it in lower back, upper back....so last emg was earlier this month so does it matter when EMG was conducted? Also nerve biopsy was done at same day....what is doc looking for? Thanks