Hello, I am the worried mother of an 8 year old boy who has had pins and needles for approximately 2 years. The feeling began in his back but it seems like with every fever the pins and needles travel to some new area. He now has the sensation in every joint and in all fingers and toes.
We have been seeing a neurologist and have had numerous tests done to help with diagnosis. His spinal/brain MRI showed no lesions. However, he had an EMG performed that showed muscle myopathy. Beginning in Kindergarten (age 6) he has had chronic pneumonia, and we have seen a pulmonologist to get his asthma and breathing under control, which it now is. When we started with his testing, he was IGg deficient, but as his breathing has improved, his levels have gone up.
My sister suggested posting on this forum to ask if anyone has information on MG, and I am asking for information if anyone has it. He has no slurred speech, or eye problems, although he does have double vision occasionally when he is tired. He tires easily. His bloodwork has come back withing normal ranges and I am wondering if there is a conclusive test for MG (which I know is one option of what could be causing his symptoms). What should I be looking for?
We are so worried. Do symptoms increase in times of illness? Has anyone ever heard of a child being diagnosed with MG?
We would appreciate any information that could help us even know what to look for.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
It sounds like your son has been having symptoms of pins and needles in his extremities and an EMG that was myopathic. Without the ability to review your medical history and examine your son personally, I can not give a diagnosis. However, certain conditions come to mind when I hear about symptoms such as his.
First, regarding your concerns about myasthenia gravis (MG), while MG is in a sense a problem of the muscles (to be more specific, it is a problem in the area right between the nerve and muscle, the neuromuscular junction), myasthenia does not typically cause sensory symptoms such as pins and needles. It can definitely be diagnosed in children but as you mentioned presents with weakness on repetitive exertion, double vision, droopy eyelids, slurred speech, drooling etc. While some patients with MG can have negative laboratory testing, the majority will have positive antibodies.
The symptom of pins and needles is one symptom of a sensory neuropathy: a problem in the nerves that provide us with sensation and transmit the sensations to the central nervous system. There are two types of sensory neuropathy: small fiber and large fiber (depending on the size of the nerves affected). With small fiber neuropathies, the EMG/nerve conduction studies (NCS) will not show an abnormality, and a definitive diagnosis can only be made with a skin biopsy so that the number of nerve endings can literally be counted. There are other tests of the function of small nerves that can be ordered, such as QSART testing which looks at how much sweat the skin makes, since sweating is in a sense of function of these small nerves. There are several causes of small fiber neuropathy, but this is uncommon in children.
Abnormalities on the NCS will be present with large fiber sensory neuropathies. These are not uncommon in children and have several causes. They can be hereditary, metabolic/genetic, or due to vitamin deficiencies or toxins.
One disease that comes to mind in a patient with asthma and symptoms of a neuropathy is called Churg-Strauss syndrome, which is an inflammatory syndrome called a vasculitis. The cardinal feature is asthma along with involvement of other organs including the nerves. Often, patients will have a high eosinophil count on the CBC (eosinophils are a type of cell in the immune system).
It sounds like you have had an extensive evaluation by a neurologist. If you have not yet seen a PEDIATRIC neurologist this may be particularly helpful; a pediatric neurologist specialized in neuromuscular diseases such as neuropathy would be ideal.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
I have MG and has he been injected directly into his artery to confirm this? This is followed by a nerve conductive test. Does he have a frown on his face all of the time or does he look like he is upset when he is not? Facial features are really the tell all as people thing you are mean or upset because you cannot control your muscles in your face. Does his speach slur sometimes or has he have trouble breathing this is also a symptom. Let me know. I take mestonin for it but it can make you more congested but it does help with the other problems. Does his muscles ache or get tired easy? I could go on and on.
Actually, he doesn't have any facial issues at all. We just started noticing that his speech is effected when he is tired or ill. He has a hard time completing a thought and will go back and repeat the beginning of the sentence until the end word/words present themselves. We do have pediatric neurologists on the case, and they are absolutely wonderful, and in a way I totally respect their unwillingness to say even one word about diagnosis until they are sure. But.....the internet can be a double edged sword with that issue. If, as a doctor, you say out loud different options than the parents will go research them and, of course, build up the worst case scenario. But on the other edge of the sword, not giving information to the parent doesn't stop them from researching all of the symptoms and obtaining, probably, a more dreary scenario.
To answer another of your questions-he does tire easily. The EMG that he had done was a single fiber EMG, if you know anything about that. Again, my sister had suggested posting on a website to gain information and understanding, and it was a very good idea. I receive a lot of information by reading other comments and stories.
I am hoping for a good outcome for my son. I am no longer hoping that the sensation will just disappear, but hopefully it will be something that we can manage.
Okay, I am only posting these thoughts out of My experiences with my son.
If none of these tests are leading anywhere, perhaps there are other roads to venture. My son had many "sensations" like that. He was kind of a particularly quirky kid when it came to him touching things & things touching him (socks, tags in clothes, etc.). He would almost feel like he needed to crawl out of his skin. Interestingly, if you touched him gently, it hurt...if you rubbed his feet or legs hard, it felt good. He began to also experience these intolerances with food. He would many times describe mashed potatoes as "having fussiez" in them, apples began to have too many bumps in them to swallow--same with carrotts...
Where I am going with this...he initially at age 7 was diagnosed with "Sensory Integration Disorder". I would be curious to hear more about your little guy's behaviors, mannerisms, food issues, how he plays & interacts with other kids, adults...
In 5th grade my son's diagnosis eventually moved to include an even more complex diagnosis, but before I lead you down a road that is just one more unecessary concern on your plate, can you give more information on your son's temperament, quirks, how he interacts with kids, adults, etc...
We worked hard for the answers for our son. Perhaps you are looking to the wrong doctors for your son, maybe that is why they can't find answers for you.
Let me tell you more about my son. He is extremely intelligent with almost a photographic memory. (We actually tell him what section of Disney World we park the car in because since he was 3, he seems to be the one we can count on to remember.) He has been picked up in school for gifted services. He is very verbal and has a large vocabulary, however we have noticed that lately he almost stammers. He begins a sentence and seems not to be able to find the right word to complete his thought. For example, he would say,"I was very surpised when I...." "I was really surprised by..." "I think that it was surprising when I saw Kevin in the grocery store." Sometimes it happens on a word and sometimes on a sound.
My older son was very social, but Simon is not so much. He loves to be around his friends, but mostly on a one on one basis. He gets really tired when he plays. Going to birthday parties is hard for him, because he can't really keep up with the running around. When he was littler, I never let him go to parties because he inevitably ended up in the hospital after being exposed to all the germs. (I am very serious about this...he did. 2 birthday parties followed a week later by two hospital stays was enough for me to lay off of the parties.) At about the time of this, I would say the height of the illnesses and the low immune system he was about 5 and 6. Since then, his health has been getting a little better. This past year (Age 7-8) he didn't miss as many days of school.
(I'm telling you everything wierdish) His nose gushes blood. For the past 2 years (the length of time that he has had the pins and needles) when he gets sick he gets these nose bleeds that you wouldn't believe. Even the nurses in the hospital were unprepped for them. I would tell the doctors, his nose won't stop bleeding, but it always seemed that they didn't believe it until they saw it with their own eyes. We would carry a bucket (I called it the bucket of bodily fluids) We literally had to carry the bucket to the doctors to catch the blood and the vomit from coughing because no amount of tissues or towels could absorb it.
He hates things that stick to his teeth. Everyone is always surprised by this because he declines candy. Starburst are the worst, but he won't even eat the marshmallows we roast. He roasts them and gives them to me. (He is actually quite the perfectionist and does a really good job.) I can't think of any else that is quirky about him. He is sweet, super sweet. He is calm and he never complains about anything. The people at the blood lab know him and are amazed by him. He is so used to being sick that he doesn't ever throw a fit. His health teacher at school thinks that he is a health savant, and believes that he is gifted beyond belief, I just tell him that he has spent a lot of time talking to doctors, so he knows pretty much about the human body and how it works.
He can't jump. When they did jump roping in gym class, he came down to me and told me that he was the stinkiest jump-roper in the world. I thought that maybe it was his asthma, but he said no, he was just too uncoordinated to do it. After meeting for the first time with the physical therapist, she told us that he can't really clear the floor with a jump. Also, when she had him scoot himself around with his arms (his belly on a scooter) his arms didn't get tired too fast, but he grew less and less able to hold his head up.
Anyway, lots of information, and I know I was rambling. I am trying to think of any of the more unusual things about him. He is pleasing to people. Everyone likes him. All of the kids in his class like him, and he has charmed all of the faculty and secretaries and nurses. He is just sweet.
He also drinks nothing but water. Water, water, water. You would think he was a camel. I thought first that maybe he was diabetic, but that checked out okay. He takes lots and lots of baths. Morning noon night anytime.
Without going into a whole lot of my experience with my son, I can relate to the lack of coordination, the OCD tendency, the relating better with one child at a time & the charming the teachers.
Your autoimmune concerns sound very real. I too have an autoimmune disorder that caused miscarriages, a Mini Stroke & some recent frightening concerns that I am in search for answers to--so frustrating! You sound like you are pursuing answers from a neurologist. Are you having him monitored by a Rheumatologist? Pediatric Rheumy would be the best place, but I am sure you are aware of their importance with such an intense family history of autoimmune issues.
As for the behavior issues that I thought might be much like my son's sensory integration issues...perhaps you could check out this website with careful consideration...http://www.spdfoundation.net/
My biggest problem when they started throwing this diagnosis at me was that I hate people putting our children into these little boxes.
Our son's issues went beyond this sensory integration diagnosis & eventually was diagnosed with Aspergers (which encompasses the signs & symptoms of sensory integration). This diagnosis may sound unnerving...but honestly, you wouldn't know it from looking at him. He is now 14 & is the funniest, most well-like kid in a normal school that only offers him accomodations for the anxieties he experiences when they do testing, or at the beginning or end of school when energy levels and activities around him are too much for him. We have just learned to take the time to tell him what to expect, discuss what might happen & give him his options on escape or coping when unfamiliar situations arise.
The way to look at it if they find answers that are a little scary...at least you now know what do do for him...you can now treat him...treatment was very helpful for our son.
AGAIN...it is not that I am say all the things you listed are like either of these disorders, I am saying you just sound like you are feeling helpless for answers and when you run out of avenues to search for those answers, we feel like we are not doing what we could or should for our child. JUST an avenue...
Good Luck. I would love to hear more...Truly... (I will send you a note to tell you I posted this...Please keep in touch (did want to know if he is seeing a Rheumy too)
I actually haven't made an appointment with a pediatric rheumatologist yet. I do have the phone number and name on my list of things to do on Monday, though. I have heard that it takes a long time to get in, but our neurologist thinks that it would be a good idea to set up an appointment. We have an appointment with a neuro-muscular disease specialist, an neurologist, and a neuro-muscular geneticist in two weeks, so I am hoping that we will be closer to a diagnosis at that point. It is very frustrating to deal with all of these issues without a diagnosis, which is stupid, I guess, because what difference does it really make? It won't change what it is and what we have to do to deal with it. I guess what I am hoping for is a treatment plan that will take away all of his symptoms with little or no side effects! (I know as I am saying this that I am DREAMING!) So again, I think, what will a diagnosis really do for him? Maybe I want someone to tell me that it won't get worse and that he will grow into an adult and live a normal life. I don't know. Heck, if we are talking about wants....I want it to be over, done, no more pins and needles, no more fevers, no more sickness. I want him to wake up one morning and say, "Mommy, they are gone. I feel great!" I guess that is what I want.
Thank you for your post. It is very good to keep an open mind and to be able to explore other options if we need to.
I am really sorry to hear about your son. My mom says the same things. I also have pins and needles but only really in my legs but they are really bad really sharp pains up to my hips. I also drink lots of water like more than 4 liters. I am really weak and get tired really easily and I cannot walk and alot of other things. Did you find out what your son had? Do you have any advice for me?
I am so sorry not to have any advice. We still do not have a diagnosis for my son. He has been doing physical therapy which is helping build strength in his trunk, which I think will eventually help him manage the discomfort in his body. We have taken him off of most of his medications thinking that he could be having some sort of reaction to some of his asthma meds. I know that it is uncomfortable and hard to live with. I hope that it gets better for you. If we find anything that helps, I will be sure to pass the information on to you. Take care, and I hope that you are feeling better soon.
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