An update from my previous post...

[Swilliams921]

I'm sorry, I tried to update on previous thread but it was closed. I guess it's been too long. I'm still in limbo trying to figure out what's wrong with me. I tell you, the time between getting into docs and waiting to have tests done and then waiting for follow up to get results is excruciating. I'm sure I don't have to tell you all that

Just a recap from my last post - I had my first EMG in Feb after experiencing a lot of weird sensory symptoms ( all started with tingling down my whole right side, then progressed from there) I've had EVERY symptom you can imagine. The main symptom that sent me for an EMG was my right calf was very soft and I had twitching just in right leg. That EMG was normal. That Neuro basically told me I had anxiety and to go away. My next EMG with a different Neuro was in April and that is what I'm reporting her. I actually just got my results and follow up a week ago. My doctor would not release report to me until I saw him and it took two months to get in there.

Impression: There is electrical diagnostic evidence for minor isolated brief motor twitches seen as isolated fasciculation potential. The appearance appears benign and may indicate hypersensitive peripheral nerves. The abnormal positive sharp waves my indicate radicular changes of the spine. There is not enough findings to implicate a motor neuron disease process. Please clinically correlate to the examination and history to better characterize the findings.

Needle EMG of the four extremities was remarkable by evidence with minor isolated fasciculations seen in two lower extremities and right biceps, isolated. There are minor abnormal positive sharp wave discharges seen in the muscles tested as listed, with the right leg more effected.

So just to be clear, I had 1+ positive sharp waves in almost every muscle tested in my right leg, some in my left leg, 1+ psw on right bicep, and 1+ psw on L5 right paraspinal. A few Fasc here and there. The next plan of action is to get 50 blood tests done and to go back in a month to go over tests. My neuro told me that if he referred me up to the ALS clinic in my area that they would probably dismiss my file, that there is not enough for them to go on. Normal reflexes and normal strength tests. Is that the only way to get to a clinic is through my neuro?

At present my symptoms are that I've lost muscle in almost every part of my body: both legs, both arms, both hands, chest, left side by ribs, dents on forehead, and probably most disturbing to me is my tongue. I can feel my tongue burning away literally. It has shrunk in size significantly. I can literally feel my muscles shrinking. My arms feel very week and heavy, but the thing is I"M NOT WEAK!!! I can literally do everything I used to. I showed all this to doc and he just said "Well, I never measured you before so I can't tell". I even showed him my tongue and he said he didn't see any fascics. At the end of my appt he says "I can't tell you if you have ALS or if you don't have ALS". UGH!!!! So frustrated. I've done such extensive research on what else this could be but can't find a thing. I mean, what else causes so much muscle loss in a matter of a few months with no weakness? I'm so sorry this is so long. I just wanted to give a detailed update.

 

[starente15]

It sounds like you've been cleared of ALS which is great news.

Symptoms such as 'dents', having your tongue "burn away" and feeling limbs that are weak and heavy yet not weak are not indicative of ALS. The bad news is you still have high anxiety which is being fueled by doing extensive research on a terminal illness.

Have you been cleared of Lyme by any chance?

 

[KimT]

So you either stop worrying or go to an ALS neuro and get his or her impression. If you can't stop worrying, get your records and go to an ALS specialist. I don't think you have ALS but if you don't believe your doctor, why would you believe me.

 

[affected]

goodness me - you aren't going to be believe an of us, but for the record - there are zero signs of ALS in both your symptom descriptions and your EMG report.

Please, we are giving critical support to the terminally ill here.

 

[Swilliams921]

Thank you for your response. No I haven't had a lyme test yet. That's one of many blood tests ordered. When I said I've been researching, I meant I've been trying to find anything else but this in between waiting months for my appt. I feel so helpless. My husbands in denial. He knows there's something wrong with me but will not even discuss this possibility. The position I'm in right now is - Is that it's really hard when I have all these symptoms that only I can feel, but no one else can see - other than some atrophy. I don't have any physical disabilities now so it's really hard to talk to friends, family or anybody. They just think if I look fine and the doctors aren't dx'ing me with anything then I'm all good.

My neuro said this may be a "wait and see" situation. I'm sorry if this sounds extremely insensitive, but do you have to wait until your dropping something or tripping or even starting to slur your words before your taken seriously? Does these sorts of things happen first when looking at this dx or will having all these symtoms first eventually lead up to these disabilities? My first symptoms started the end of January, have slowly progressed, but no clinical weakness yet. I know everyone is so different so this may be impossible to answer. Thank you for your time.

 

[FamilialALS?]

I'm sorry if this sounds extremely insensitive, but do you have to wait until your dropping something or tripping or even starting to slur your words before your taken seriously? Does these sorts of things happen first when looking at this dx or will having all these symtoms first eventually lead up to these disabilities? My first symptoms started the end of January, have slowly progressed, but no clinical weakness yet. I know everyone is so different so this may be impossible to answer. Thank you for your time.

Dropping, tripping, and slurring are exactly what real ALS symptoms are- muscles failing. You have described nothing at all related to this, which is why everyone is telling you that you do not likely have ALS. But even better than that you have a credible doctor telling you that you don't.

 

[codyclan]

No clinical weakness means no ALS. A doctor can identify true atrophy without knowing what your 'muscles measured before'. You don't have either, so you do not have ALS. Dropping things, slurred words, etc... are the symptoms of ALS, not perceived weakness. Here's the thing, in your case, what would a diagnosis of ALS get you, even if you did -- and I don't believe you do-- have it? There's no treatment. There's no early intervention. Work with your doctor to address your anxiety, but don't think about ALS anymore.

Also, be kind to your husband. Trying to convince him that you have a terminal disease that no one but you has diagnosed is cruel.

Tracy

 

[affected]

I'm sorry if this sounds extremely insensitive, but do you have to wait until your dropping something or tripping or even starting to slur your words before your taken seriously?

Yes it does.

There is a post at the top of this forum titled READ BEFORE POSTING. It is obvious you have not read it, or at the least have not absorbed what we put a lot of time and effort into explaining there. Please go and read it on your way out.

ALS is about FAILING to be able to do things. It is a disease in the brain and spinal cord nerves, it's not a muscle disease - you don't feel all this stuff, you can't do all this stuff.

You don't have ANY of the symptoms. Your poor partner isn't in denial, you are exhibiting an issue with health anxiety. Please, slow down, go live some life while you have it, and get help for your anxiety. We have done all we can here, you won't convince us of anything.

 

[Lkaibel]

Yes, you do have to "wait", wait until your muscles actually fail. Then when that happens IF all other tests and signs point to ALS and IF everything else it could be is eliminated you "get to" stop waiting and be diagnosed. We just "got to" stop waiting. Sounds to me like Dr's are telling you no ALS and you are trying to torture your spouse with the possibility of it - glad the spouse is not buying in to the anxiety.

 

[diagnosed2016]

You don't have weakness. Thinking you might have some weakness but being able to do everything is not weakness. No one else sees it because it is in your head.

 

[Swilliams921]

Lenore, Thank you for taking time to respond. I'm sorry for your husband's diagnosis. This is where I get so confused because I've read those stickies over and over and over again. It says FAILING, not FEELING. As in you literally all of a sudden notice you are failing. Mine from the very start has been all feeling. Don't you feel things before they start to fail? What I'm most scared of is the muscle loss all over in such a short period. I used to be a nurse and have always been very in tune with my body, so I know what muscle loss is and looks like. My poor husband - he kept saying it was my hormones that's causing all this. Then when all my muscles started getting smaller he said it was because I haven't worked out in a while. He finally admitted he's scared. He can't imagine something devastating happening to our family again. (We lost our oldest son five years ago).

My doctor told me he couldn't tell me if I had ALS or not. The EMG couldn't implicate it at this time. At one point he told me I could take Riluzole if I wanted but that it came with nasty side effects. I was offended that he said that to me. Anyways, I guess just wait and see...

 

[Nikki J]

Quoted from the sticky. If you took time to absorb the meaning and understand the mechanism you might stop asking us please really think this through
"It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work"

re referral to the ALS clinic. It may very well be they will not see you if you do not meet criteria. I could not get an appointment at mine until they reviewed my EMG. If you do not trust your neuro you could look elsewhere for care but is this not already your second opinion? However if you are truly wait and see, you need to find someone to work with and settle in. Or go back to your pcp for a thorough reassessment

 

[diagnosed2016]

Also, an emg would indicate acute and chronic denervation for ALS. Yours doesn't. You don't have it. Congratulations.

 

[affected]

You can believe the sticky or not, you can struggle with it or not. It is our official position, we don't budge from it because it is the way it is.

The EMG picks up ALS in areas of your body you didn't even know because in fact the signal fails and then the muscle dies after some time of failing. So, in fact you don't feel things and eventually get proved right as something you felt finally fails. In fact something fails and you are surprised as it felt normal.

I think that's about all we can discuss now.

 

[Swilliams921]

I'm finally getting referred to a local Neuromuscular Specialist at an ALS clinic. All blood work came back normal except for high mercury level and high EBV antibody.

They checked my reflexes and strength which are still normal. My question is can you still have normal strength with muscle loss everywhere (legs, hands, arms, chest, shoulders, tongue) with ALS? That's my only saving grace is that I'm not weak yet - Just "feeling" weak. My only other worrisome symptom is the profuse twitching in my right leg. Started in calf but now is whole leg - no where else.

Thank you again for your time.