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tinkbell

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Hello, I'm new to this forum. I'm a 34 (soon to be 35 :razz:) female. I have two girls 10 and 12. Okay, a little over a year ago I went to my primary Doctor with muscle weakness in my right arm and shoulder, hand temors and weakness in my legs. Some twitching. He thought it was my lower back and from typing on the computer. to ease my own mind I went to a nero... he thought nothing of it and sent me on my way. Over the past year when It would bother me I'd chalk it off to this or that...still do my normal activites. About this past Dec. It started up really bothing me again where it would last more then just a few hour and more like week at a time and calm down for a week... then end of Jan..my tongue started feeling weird on the left side and burning, left side of face to weak burning a little tingling. few days after that started I noticed my left eye brow was lower and my eye was drooping and even my nose and mouth looked a little off..I can really tell when I take pictures and look in the mirror. Went back to nero (same one) and he says not eveyone is the same Well i was for 34 years! my Tongue is a little crooked when I stick it out and the left side is always weird feeling and tired and so is my throat on that side. He thinks its in my head...i wish! Got second opinion and he thinks vitamin d and the this and that and stress...I'm not convinced not typical of those things. Please anyone have any advice or had this type of onset? I can't sleep, i cry all the time and scared to death I'm leaving my girls before i'm ready to let them go and leave them with out a mother at these young ages.

Thanks in advance!
 
tink~

Have you had an emg? I know how you feel, it is very concerning when you have young children! Hang in there.
Maybe it is MG? Have you had that checked out? I went through the crying all the time in the spring and it does get easier. It is hard, Its been just over a year for me and I still dont have answers and als has been ruled out for now. I have alot of those things as well. My face looks different in photos as well, and my neuro dismissed it as age. Well, it was over a year only....

I can relate to how you feel and what you are going through.

Hang in there!

~april
 
Tinkbell,

I am not an expert, and do not have ALS, but the burning sensations you describe on one side of your face and tongue do not sound ALS. Please don't go down the road of stressing out about the kids. As a father of three (youngest turns 4 next week) with no diagnosis for my health concerns, I can tell you the stress and tears will only make it worse.

There are a handful of different conditions that can cause facial weakness and drooping (Including Bell's Palsy and nerve damage) that you may be experiencing. If your neuro is being dismissive, try a trip back to your primary care doctor to see if he or she has ideas, or can refer you to a different neuro.

Don't give up yet. You just might not have an easy one to decipher.

Best wishes,

Robert
 
Just a quick postscript:

Early on in this process one of the things that bothered my the most was my nose changing shape and a constant feeling of stuffiness. The other day, my wife looked at me and said she thought my nose was starting to look a little more like it did in the old days. Whether that was to make me feel better I don't know, but it worked :)

Robert
 
Tink -

It sounds to me like your doctors are telling you that you have a vitamin D deficiency and are carrying an overload of stress. These are 2 very manageable conditions.

If I received this as an evaluation, here is what I would do. I would start taking vitamin D supplements (you may also try D3) and develop a stress management program.

It wouldn't hurt to try this out!

Zaphoon
 
Hi Tink...sorry for your troubles. I don't think facial drooping is ever a good thing. Did docs ever draw blood? Not an expert on anything, but my opinion would be that if the face droops again, or if it goes numb, take yourself to the hospital.

Better to play it safe. Maybe someone there will pay better attention. Wishing you the best, as you search for answers. Welcome to the forum.
 
tinkbell ... I agree with April, those could be symptoms of Myasthenia Gravis ... an autoimmune condition that can be treated. A drooping eyelid and changes in your facial expressions are often symptoms. The first step in diagnosed MG is blood tests looking for antibodies.

I also agree with Zaphoon ... if the doctor thinks it could be a vitamin problem, the logical step would be to follow his advice and take whatever supplements he recommends, and perhaps work out some ways to reduce stress .... yoga or meditation or exercise or just some "me time" in a long bath. If those steps don't help, then ask the doctor where you go from there.

Your symptoms don't sound anything like the onset of ALS, if that is what you are scared of.
 
Thank you!

I appreciate everyones kind words and advice! It's a SCAREY thing not knowing what is wrong with you. I couldn't wait to get up this morning rushed in to work waiting to to see if anyone had read my post and replied! So thank you all for putting a smile on my face this morning...it was nice to know there are people out there that care enough to take time to try and help someone else, when they all have their own issues and concerns on their minds! As far as some of the questions you all asked...i had lots of blood work, my vitamin D was 19.7 and it should be 32..my researched showed that 16 is when they concider it really low. They gave me a perscription for that. I also started taking a regular daily vitamin. Don't know if its doing anything but I'm trying :) I had an emg Feb of 08 when the symtoms started and it was fine. But I know that was a year ago and things change, my symtoms have (i have more). i have read about MG but, i can't shake this feeling it's ALS. I'm a MESS! AND I HATE IT! I don't go back for three more weeks to following up on the vitamin D. I had an MRI and Lumbar puncture last month and everything was good there...no MS, Lyme, HIV, Sugar, protien all good. So I feel like I am ending towards the only other thing...ALS... My body feels fine all night soon as i move around in the bed in the morning POW my legs and ankles weak and tied a little achey like feeling and in my lower back too..Okay i'm rambleing now...EVERYONE HAPPY FRIDAY! And thank you again..I'll be sticking around in here!

Tanya
 
have you had an autoimmune panel run by a rheumy yet or ever?

I know how you feel when things are ruled out (strange, to be hoping for some bad disease) and you think that als is the only option. I have felt that as well. But, I have learned that there are some strange neruomuscular things out there and they don't turn into MND. Some people from what I have researched don't find out what it is. So, hang in there. I am still looking and will share what I go through or find. I took a break but I think I am going back to my rheumy, GP, Infectious diagnosed doc and all that again, so back on the hunt for a diagnosed.

~april
 
No, i have seen a rheumy yet...maybe that should be my next step! I kinda decided against it because the Lyme disease was ruled out with the LP. It's the strangest feeling to hope it was MS or Lyme...anything that answered my questions and ment there was HOPE. Please keep me posted on your findings as well and GOOD luck on your search for your own answers! I have complained for years because of the illnesses I already live with (Menieres disease, raynauds and Chronic sinusitus) but those things seem like nothing now and Im sorry I complained so much! I feel like I'd give anything just to be okay and me again! Thanks again April!

T-
 
T-

Not knowing what is going on and having these symptoms is very scary I agree. Lyme disease doesn't always show up in LP's or blood test it is a very tricky thing. Are you taking anything for the anxiety it will make everthing 10 times worse. Their are quite a few of us on here with young children and no answers. I agree about seeing a rhuemy like April said, alot of times raynauds is a secondary to another autoimmune disease. Please hang in there and try to get your mind out of the dark place of ALS, there are so many other diseases
that are treatable.
 
Crystal, not taking anything for the anxiety right now. i have thought about it, but i keep telling myself I don't need it. Maybe, I'm wrong. I know that Raynauds can be secondary to other illnesses like Lupus but I have had that for 4 years and my other symtoms didn't start till late 2007/ early 2008 so I kinda figured that wasn't possible. I'm glad I've found this site and can talk to other people who understand what I'm going thru and the concerns i have. It's makes it that much frightening when you have young childern. And i feel like my friends and family just don't get it or take me seriously. So, thank you for reading and taking time to talk to me!
 
Tink,

Just wanted to add that I understand how scary it is to hear that it isn't Lyme, it isn't This, it isn't That, while imagining that as everything on some imaginary list gets crossed off that the only thing left MUST be MND. There are PLENTY of us here that have had a whole bunch of things crossed off on that infamous list, and it doesn't mean MND. You have to remind yourself that MND does carry some very specific symptoms/signs that must be present to even have it included on the list to begin with! For me, two years of symptoms with no real "progression" and a clean EMG mean that MND is not even on the list. So I imagine the remaining stuff on the list as "fill-in-the-blanks" and it is kind of hard to cross them off when you don't even know what they are. So until science catches up and fills those blanks in or until my body decides to do something that results in something being added to the list, I can only wait and see. So welcome to limbo. It's not all that bad. 8)

Lydia
 
Tink~

lupus if it is systemic, can attack your muscles. One ladies lupus attacked her and brought on cipd. There was another young mom on her and she ended up with lupus and some autoimmune issues for her diagnosed after fearing Mnd. So, lupus could be an explanation. There are many others things as well, if you are feeling worried I would recomend going to a great Rheumy as as possible. (I should take my own advice). I hope that you dont need anything for anxiety but if the fear or worry is or does consume you then think about. It worked for me, but I am thinking of switching to cymbalta or med that can help with aches and pains as well. I am cutting back on my lexapro but Ihave to say it has helped me. I never thought I would something like this but it is the one thing that helped with my fear and anxiety. It would be nice to know what I am facing but I read on this forum someone say 'no diagnosed is better than a diagnosed', so that is what I going on!

april~
 
Okay, some other symtoms I'm wondering about...As i have been talking about the left side of my face kinda drooping, i forgot to ask if anyone notices when they raise their eyebrows that (leftside in mycase) the wrinkles in your forehead and crooked. my eyebrow has dropped some on the left side as well...and the left side of my lip seems to appear fuller as it's drooping inward more. Although my symtoms started in my right arm and shoulder just over a year ago, moved to my legs, ankles,wrist ect. The most annoying of symtoms the last 2 months are in my (left side) tongue, neck, throat, eye, eybrow and lip. I'm loosing hope here..I got a call back from Number 1 nero..who just straight up thinks i'm nuts that they are trying to get me an appoinment at UVA. After a year of me pushing pushing the to relize i'm not crazy. Now that the facial and tongue symtoms started i really have been pushing them to do SOMETHING! I hope that comes soon!
 
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