Scared of what is happening to me.....

[abush]

Hi everyone. I am a 32-year-old female. Since Oct 13th I have had some very strange things happening to me. I had a baby in Feb. 2010 my precious baby girl Emilee. By May I started having weight loss, hair falling out and shortness of breath. Ofcourse this ended up being a thyroid issue Graves Disease. Well all of my levels got under control with medication and I am awaiting radioactive iodine therapy in a month or so.

Here is the strange stuff. In Oct., while my thyroid levels were perfectly normal and being controled by medications, I woke up in the middle of the night with vibrating/quivering type sensations all over my body. That went away the next day and then returned the next week. Since that time this has not gone away and I have noticed is made much worse by using my muscles. If I walk alot my whole body will shake as soon as I stop walking and stand perfectly still. My arms and legs will jerk for no reason. I have uncordinated hand feelings. They just feel strange when Im doing things. At Christmas dinner after sitting around laughing and talking with family my mouth was tired. I could even feel shaking vibrations in my nose and lips after. I dont have muscle cramps ever or actual twitching its more like my muscles are shaking or vibrating. Ive had tingling and numbness in random parts of my body also.

I went to my family doctor and he says since my thyroid levels are in range its not that and orders a CT head w/contrast which was normal. Then he sends me on my way and says there is nothing more I know to do to help you f/up with your Endo. Well I did that and he sent me to another family doctor for second opinion. She did vitamin b12 test-normal and MRI brain-normal. I f/up with her and she said she thinks its my thyroid. I cant get an answer. All I know is that Im suffering. I cant stand all this shaking and fatigue. I cant stand the strange feelings when I type, ty my shoes, chew. The thing that bothers me the most is my arms are so fatigued sometimes that when I go to pick up my daughter out of the bath tub my arms shake like Im lifting 1,000lbs. I know this isnt normal. Im scared! I cant sleep or eat! I look at this beautiful baby girl I have and think I have something like ALS and wont see her grow up. The 2 family doctors I saw did a few neurological tests but nothing major and said no need for a neurologist right now. Im scared of getting worse! I just want to know from someone who has seen ALS first hand and knows what they or their loved ones have experienced symptoms wise. Please someone tell me if I need to become more pushy in getting a neurologist. Where i live you can not get an appt. with one without a referral.

Thank you for your time

 

[Alyoop]

You stated that your endocrinologist thinks it might be your thyroid, so you do have an expert opinion already. Its not ALS thats for sure.
You are waiting for radioactive iodine treatment. Maybe you should have that then wait and see what happens, If it does not settle down then insist on a neurological evaluation.

best not to hang out here tho. Its bad for your Psyche.

Best of luck Aly

 

[trfogey]

abush,

Grave's disease and the thyroid storms that come with it can cause many of the muscle symptoms that you describe. ALS doesn't. Please put the worries about ALS out of your mind. You may also consider asking one of your doctors to help you with the anxiety you obviously are feeling.

Good luck with your radioactive iodine treatment. If all goes as expected, you'll be feeling much better soon.

 

[abush]

Thanks for the replies. I think Im going to do my iodine therapy and see how things go. Can't help but worry these feelings are so hard to explain and hard to ignore. You and your families are in my prayers. I'm going to stay off the Internet it always make
me worry....

 

[laurel]

All your symptoms sound thyroid related. Grave's Disease is often very hard to stabilize in particular with pregnant and post partum women due to hormone changes. Nothing you are saying points to ALS. I'm not sure why your endocrinologist would send you to a GP for a second opinion versus to another endocrinologist. Like others have said, wait for your radioactive iodine treatment and go from there as I'm sure things will go back to normal then. Try to stop worrying about ALS as all indicators point to thyroid issues. Good luck. You'll soon feel better.
Laurel

 

[abush]

My Endo said that most of the symptoms I was decribing was not coming from my thyroid at this time beause it is currently under control with medications, which is done while awaiting iodine therapy. That is why he sent me to my family doctor to rule out other things that could be causing those other symptoms. Which is why Ive had the mini neurological exams, CT and MRI of my brain. I guess they had to rule out a brain tumor. I appreciate your replies. Im just going to try not to worry anymore and take one day at a time. I think Ill try to start exersing more to help build up some muscle strength and see if that does anything to help the shaking while I wait on my iodine therapy.

God Bless

 

[NotALS!]

Have you been tested for Lyme disease? Make sure to use Ingenex Labs in CA, the regular CDC labs aren't reliable. I was diagnosed with Graves disease years ago, was treated and it resolved. Recently it flaired again and I took synthroid. Within a year, my right arm started to lose strength and my shoulder began to atrophy. Within a year, the weakness and atrophy spread to my other arm and I was diagnosed with ALS.

I went to a lyme literate doctor who put me on iv ceftriaxone. My thyroid levels returned to normal, my chest pains ceased and my sleep apnea totally cleared up. I never tested positive for lyme but sure looks like I had it!

Anyway, there are alot of insect-bourne infections besides Lyme that could be causing your symptoms. I had tingling in my nose, lips, ears and muscle twitching and shaking. I also I had unexplained high fevers, difficulty swallowing, ear ringing and the list goes on. I still have a diagnosed of ALS but I believe if I have ALS it was brought about by Lyme.

I am currently battling Lyme with numerous antibiotics which is really difficult. I have C.Difficile and yeast problems, a low white blood cell count and continuing gradual atophy. But I'm going to keep on fighting to stay with my husband and young son. It will be a long road but I have to focus on having hope or else I will not be able to go on.

My advice to you is to look for a good Lyme specialist. Lymenet. org is a wonderful website full of patients sharing experiences and information. Good luck to you!