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Fig1985

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Hello, all.

I am a 30 year old woman who has been experiencing chronic pins and needles in hands and feet, very painful muscle spasms, weakness/clumsiness in left hand and fingers and some loss of sensation in my toes. My hands almost seem to jerk away when I am trying to do fine motor tasks, like close buttons or slice an apple. This has been ongoing for a little while, but I thought I was just tired or distracted (I have a 20 month old son who still doesn't sleep). The pins and needles came on suddenly, and my PCP referred me to a neurologist. (I have actually been seen primarily by a neurology nurse practitioner.) My exam showed that I have hyperreflexia in both my arms and legs. They ordered an MRI of my brain and c-spine, found some issues in my c-spine - an osteophyte irritating a nerve that could explain my hand issues, and a mild narrowing of the canal - but apparently nothing that they feel could be causing the bulk of my symptoms. I saw the nurse practitioner for a follow up and she told me they wanted to do an EMG to rule out "the big guns". I had no idea what the big guns were, so I asked her and she replied that they wanted to rule out ALS.

I was completely shocked. I didn't even think of ALS as a possibility and had no idea it was on the table. I was also confused, because I didn't think there was a conclusive test to exclude ALS. Am I mistaken? Also, does it seem right that ALS would be brought up so soon? This is only the second time I've been to this office. I thought it usually took some time before ALS would be considered, especially considering that many of my symptoms seem to be atypical of ALS, from what I can tell. I'm scared I'm seeing the wrong people and I'm scared that I might have something so much more serious than I ever could've imagined. Does this experience sound reasonable/typical/familiar?

I am so sorry to bother you all. I am terrified and truly don't know where to turn. The nurse practitioner told me to try not to think about it, but I have two small children and all I can think about is how desperately I don't want to leave them. I'm very frightened and very confused. Any information or insight would be helpful. Thank you so much.
 
Sorry you must be terrified. Firstly a normal EMG would be considered to exclude ALS. The reverse is less true. There are many reasons for an abnormal EMG and even if you had an abnormal EMG that looked suspicious for ALS there would be a number of other things that would need to be excluded. Some of your symptoms would seem to be unlikely for ALS as well.
Is the neurology NP working in a specifically neuromuscular practice? if ALS is on the table you should be seeing a neuromuscular neurologist not a general neurologist and although I have great respect for my neuromuscular NP I do not think she would ever make the diagnosis of ALS or a neuromuscular disease of any kind without the patient also being seen by one of the physicians.
At this point look at who will be doing your EMG. After that depending on results I would go to a neuromuscular specialist or insist on seeing a physician neurologist possibly in the same practice but it seems a little concerning that the spectre of ALS is raised without you being examined by a neurologist. Even if your appointment was with the NP a physician colleague could have been called in to confirm the NPs findings
 
- chronic pins and needles in hands and feet >>> not ALS
- very painful muscle spasms >>> not ALS
- weakness/clumsiness in left hand and fingers >>> many causes
- some loss of sensation in my toes. >>> not ALS
- hands jerk away when doing fine motor tasks >>> not ALS
- hyperreflexia in both my arms and legs >>> many causes

- didn't even think of ALS as a possibility >>> neither do I
- a conclusive test to exclude ALS >>> There's no simple test for ALS, but a "clean EMG" would rule out ALS.

Personally, I think this is another case of a nurse speaking out of turn. Even a nurse practiticioner should recognize the limits of their diagnostic training.
 
Thank you for your reply. I have no idea if her specialty is neuromuscular or not. As far as I know it is just neurology. I know they also did blood tests on me, all of which came back negative for anything. I told them going into it that I am vitamin D deficient and taking a prescription to remedy it. At the initial appointment, the NP told me that couldnt be the cause of my symptoms, but at the second appointment she said it was possible, but kept reiterating they wanted to "rule out the big guns". She must have said the phrase four times. My husband doesn't want me to go back to that practice at all, he thinks I should leave and get a second opinion. I'm not sure if that's a dramatic or reasonable response. I guess I'm confused about what the EMG will tell them in the absence of a full spinal MRI, because if I do have a pinched nerve, won't that affect the EMG?

The other weird thing was that she prescribed me a medication for nerve pain, and when I asked how it worked she said "For most patients, it's a placebo." I found that to be very confusing and haven't even filled it as a result.

Again, I'm really sorry. I've always been relatively healthy, I have no idea at all what I'm doing or what to expect. Thank you again for helping me.
 
I would stay and get the emg. Then get a copy of every test they have run on you and make an appointment with a neuromuscular specialist.
 
Ok. I have appointments for the EMG next week, I will plan to keep them but perhaps follow up with another, more specialized doctor. I honestly would have never known to look for someone other than a general neurologist at all. Truly, thank you all so much for taking time to answer me and give me advice. I know there are many reasons for responding to a thread like this to be low on your priority lists and it means a lot to me.
 
Dear Fig1985, I felt compelled to register and give a response to your concern. I have been viewing this site for about a year with my concerns and symptoms very much like yours. My symptoms started with tingling in my feet and hands, and progressed to various muscles being tight, tremors, and pain in many places, amongst other things. For much of the year I fretted over the possibility of ALS, and I have been viewing this site on just about a daily basis. After many appointments at various places (yes, some of the best facilities in the world), and four EMG's I have had nothing that showed up until recently with a great MD at Johns Hopkins. No other place tested for vitamin B6 (which mine is over three times what it should be), and no one else did a skin biopsy. With the skin biopsy they have found small fiber neuropathy. This has been a long year, with various medical specialists looking at me like I was l "less than a hundred percent in the mental department" (one even sat my husband and I down and said I needed counseling-ya, ...just what someone in pain and with tingling needs to hear). I strongly encourage you to go and get the EMG to clear your mind, but be assured that your symptoms do not sound like ALS (this is only from my knowledge, and experience). Follow up, but DO NOT let the idea of an up coming EMG to RULE OUT (Yes, RULE OUT als), consume you. No matter what anyone has ,life is too precious to waste on worry. I know this from experience (I lost many moments in thoughts and crying when thinking of the possibilities). I do not have an answer to the reason for my neuropathy, and I may not find one (there are many times no answer can be found).
So no matter who comes to this site with concerns...Don't waste your precious moments in worry. It will not make you well, and it will very likely make many conditions worse.
I can not leave these post without say how wonderful it is that there is this site for those of you who have als and the caregivers. My heart is heavy when I think of you all and what you are going through. You are all in my prayers, and a few weeks ago I did sign the partition to get the possible meds on the fast track. To all of you, I send gentle hugs.
 
Fig 1985,
I don't know as much about ALS as some of the other members on here. But, I tend to agree with Atsugi 100%. It seems that nurse was talking out of line and very hasty to even mention ALS as even being on the table at this time. I would get the EMG and depending on the results get referred to somebody else. I'm am so sorry that you are having to go through all this. I will pray that you get your answers soon and it is something that can get treatment. Take care, Kim
 
FIG1985: As Skipper advised, definitely get the EMG.
Frankly, if someone thought I "might" have a fatal disease, I would definitely get a second opinion at a world-class facility. Damn the expense. And they'll need your EMG to read.

Aside: I always wonder why people who don't have ALS (like achyalllover) continue to lurk here. Why lurk at a place that has nothing to offer you? And I know that when they post, I get ready to blast them. People who don't have personal knowledge of ALS shouldn't post here--their posts always just confuse the situation.
 
Fig, I'm going to differ somewhat. If you don't have confidence in this practice, if you get an EMG there and take it to an ALS center, the likelihood is that they will want to do their own anyway, and EMGs are not a picnic. So though there may be some delay, I would get scheduled into a definitive diagnostic process, if you are close enough to such a center to do so without major disruption. Here is a map of centers.
 
Thank you both very much. Achyallover, I'm encouraged to know you had similar symptoms and are finding some answers. I'm sorry to hear what a stressful year you've had. I am trying to be hopeful that this forum will not see much of me. I think I am partially so scared because I lost a friend to ALS about eight years ago. I visited with her weekly from before her diagnosis - it took a long time for her to get one at all - til she passed. I know I don't have to tell anyone on here how hard it was. I'm having a hard time not getting ahead of myself but will try to take it one step at a time and get myself to a practice that will help me and perhaps communicate more clearly and compassionately.
 
I am sorry you feel that way Atsugi, and I don't understand your desire to blast someone who is offering advice to a fellow human in need, as I have gone through the same stress as I think Fig is going through. I certainly only meant to help. Lurk? No, search! Search for answers that no medical person could give me. Search to see if anyone had similar symptoms and got answers. Search the forums like I have seen so many members suggest, instead of asking you all to come up with a diagnosis for me. So if I offended you, that was not my intention. I have not joined or asked any questions for a long year as I awaited (in pain, and with many als like symptoms), as I did not wish to offend. My advice was given with the "disclaimer" that it was only from my knowledge, and experience (and you can gain a great deal of knowledge from this site, the als site, as well as meeting with different medical professionals, and having a medical background).
Fig, I hope you find answers, but if you don't find them at first, keep searching. Eventually you will come upon the neuro who will help you. You have to be your own advocate in this and it can be discouraging at times. I hope you have a strong support system.
 
Thank you all very much. I was able to speak to the neurologist directly late in the day yesterday, and she was very nice and helpful. (My husband called and left a voicemail saying we did not want the call returned by anyone but the doctor - apparently an angry and alarmed spouse is more compelling than a nervous patient, which I don't know that I love but oh well.) She explained to me that any time a patient presents with limb weakness and hyperreflexia, she looks to rule out ALS, but it isn't a particular suspicion of hers in my case and she seemed as surprised as I was that the nurse practitioner volunteered that as if it were the primary reason for the EMG. She does suspect I may have some nature of nerve disorder, but not likely that or anything as severe. It is possible, but not likely. She said depending on the results she would refer me to a neuromuscular specialist, and that she would plan extra time to talk to me at my first EMG appointment. This makes me feel more confident in her, I just think I don't want to take any appointments with that particular nurse practitioner again.

As of now, my plan is to see what the EMG shows and proceed from there. Thank you again for the information provided, it really helped me to have some point of reference when speaking with the neurologist. I can't say enough how much I appreciate the time taken. I know some of you likely have a hard time typing or need to communicate via caregiver, and it means the world to me that you'd put in the effort for a scared stranger. I will update in this thread when I know more, and hopefully be on my way.
 
That sounds pretty reasonable. It seems as if the issue was poor communication skills of the np I actually think it is more appropriate to stay with the general neuro until the direction is clearer as the neurologist has planned. Best of luck with the EMG
 
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