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Karin Joy

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Hi - I am new to this forum. I am a 40 year old female, and I am exremely scared. I have been having problems for over a year now, with my thyroid. I have been on thyroid medicine for 15 years and in the last year, my thyroid has been out of control (they diadnosed my with Hashimotos). I told my Endo that I was having weakness in my arms and thighs. He referred me to see a Neurologist. I call the number he gave me and it was an ALS clinic. I freaked out, called my Endo and he said he was sorry that he did not know this Doctor was part of the ALS clinic. His thoughts were myopathies. I freaked out, and started to see a new endo, he told he all of my muscle weakness and twitching was from my thyroid. I also have an elevated CK it has gone from 167 to as high as 323 (the norm being under 200 depending on the lab) in the last year.

My new Endo told me not to worry. I have been to a Neurologist that did an EMG and Nerve test, and everything was normal. I went back to the new Endo who basically said there is no reason for my CK to have been so high again and my thyroid almost normal, he said I have ALS, and referred me to a Rhumetologist.

I called the Neurologist and she said she does not feel that I have ALS. I am just not convinced, so I made an appointment with the ALS clinic that my first Endo referred me to, after the two hour appointment, she said she was 99.8% sure I did not have ALS.

Since that Appt, I have been had pain in my thumb pads and the twitching in my left leg now feels like it is vibrating. My hands feel weaker, especially in the wrists and the thumbpads.

I am scheduled to undergo another EMG next week, but I am almost scared of what it is going to say.

Any Advice?

Thank you

Karin:-D
 

wright

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Relax

It certainly sounds as if you've been through quite a bit. Let me start by saying that elevated CK is NOT a sign of ALS . . . it is almost always normal, especially at the onset. Sometimes at the later stages of the disease it becomes elevated, but not by much. I hope that helps a bit. Secondly, you said you had a normal EMG . . . so that should reassure you, too. Thirdly, your Hashimoto condition can certainly be the reason for your symptoms, even if your T3, T4 and TSH levels are normal right now. Lingering effects from the disease and fluctuations in those levels will almost assuredly happen. One last point: there isn't a person on this planet that doesn't get fasciculations . . . and just so you know . . . they present themselves and get worse when someone is stressed and doesn't get enough rest. My guess is: you're not sleeping well right now and you're quite stressed.
Bottom line: you said your neurologist is 99.8% sure you don't have ALS . . . I'm going to have to say 99.9% sure you don't.
Go relax and get some sleep!
 

Karin Joy

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Thank you

Dear Wright,

Thank you, I am trying to get some sleep. I just want someone to say that 100% you do not have ALS. I really am upset at the Endo who told me that, and he was so mean about it - you just don't say that unless you are sure!

Are you sure about the elevated CK? I started to look on-line and it all says an elevated CK can be an indicator (I don't look at the internet anymore it just stressed me out even more). I would love to just feel normal again. Do you have ALS?

Thanks again!:)
 

Jamiet

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Karin,

No one will be able to tell you 100%. If you had an ALS clinic say no, then, it's pretty reassuring. There are always exceptions, but...from what you describe, it's likely your throid.

Just try to cope, get some meds to help. If absolutely nothing shows up on 2 EMG's, then i would say, it's very reassuring.

good luck
 

mamaoftwo

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I can relate Karin. More than a year ago, I had a doctor say that I either had MS or ALS. So far I do not have a diagnosis but I have lived with this fear for 13 long months. It is hard. The negative EMG is a good thing. I don't know anything about CK levels and what they should be but it sounds as though there are other explanations for your problems. BTW, I too have hand pain, especially in the thumb pads but also in the thumbs themselves. Sadly, this is just a waiting game and many of us here are going through it. My neuro actually said to me last Feb "this is not ALS but I don't know what it is so go away and get some more symptoms and then come back to me". Sometimes, they literally have to wait for us to get worse before they can see what might be going on. Hang in there. Hopefully the thyroid thing is the answer.
 

mamaoftwo

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Karin - just wanted to echo what Jamie said. No doctor will say that, especially in the US where the risk of the law suits always hangs there on the horizon. What they will say is that they don't "think" you have ALS, or that it is "unlikely" you have ALS. All just ass-covering language.
Don't sweat it.
When was your last EMG? They say that to detect any changes, you need to have 3mths between tests. If the new one is absolutely normal, "chances are" (neuro talk) that you will be fine.
:)
 

sammyjjr

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Also Scared

I'm 36 years old and have been having multiple problems including difficulty swallowing, mild fasiculations, and bilat leg "uneasiness". My strengths are good, but my legs feel weak and uncoordinated. The swallowing problem began shortly after a viral illness and has continued for several weeks. Basically, I can swallow, but it feels like something is stuck in my throat. I actually went a little more than a day where it felt better, but symptoms returned. I've had the gammet run, MRI brain, c-spine, t-spine, and l-spine (all negative except for some degenerative stuff). 2 spinal taps (neg), swallow eval (neg), CT head, neck, chest, abd, pelvis (neg), EGD (neg); and a boat load of bloodwork (neg). The neurologist finally did and EMG/NCV study which showed some abnormalities on the NCV study, but normal EMG. They are saying this is a viral thing and relating my abnormal NCV study as a polyneuropathy caused by a supposed virus. Of course, they still referred me to the Neuromuscular center at University of MD, but it's a month away. I don't know what to think anymore. I don't have any tongue fasiculations, but do feel as though the little fingers on both hands are a little clumsy. For months I have been waking from my sleep with numb hands so I just assumed I had ulnar compression or carpel tunnel. Now I'm not sure. Worst of all, I'm a critical care nurse - so I know far too much for my own good. Not sure why I'm writing on this board, but maybe someone elses persective would be helpful. For whoever read this post, thank you for listening.
 

Karin Joy

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Thank you both so much for answering me, I feel so alone with all of this. My husband is very supportive, but this last year has been a horrible one. My mother-in-law was diagnosed with Pancreas cancer (non curable), went to the hospital over the weekend and basically they told us that the cancer has spread and there is nothing else they can do but to make her as comfortable as possible.

I just get so worried I have two young ones (7 and 4) and want to be here for them. I know that ALS is non-curable, but if I am diagnosed with it - I want to be able to do everything in my power to stop the progression. I just don't know if I can take much more at this point.

I am scheduled for my EMG next Wednesday. The last one I had was in October, the Neuro told me that enough time has passed. I am almost scared to go. Please say some prayers for me!

Since, I am new here - I hope that you are not diagnosed with ALS. I would love to hear other stories, but then again am almost scared. The hands that are hurting scares me, then I look at them and start to think that I am getting the atrophy. What the mind can do to you!

Karin:oops:
 

Karin Joy

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Thank you all for responding! I am scheduled for my second EMG next Wednesday, I am scared to go for the fear. Today, I have noticed that it is hard to type as my hands are weaker. I have weakness in both hands. Is this common with ALS? I know that everone can have different symptoms, but I have been feeling weak in my hands/forearms for a couple weeks now and its not going away.


I have two little ones (61/2 and 4) and no not want to leave them. I feel really alone, mu husband is supportive, but his mother was diagnosed with Pancreas cancer in August, she is in the hospital as we speak so I don't want to scare him with telling him that I am getting weaker.

Everone keeps telling me its not ALS, so how come my hands are so weak now?

Thank you all
 

Carolan

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Karin, I am sorry that you are going through such a frightening time. When it comes to ALS, I would trust a neurologist who has experience with the disease before trusting an endocrinologist. In fact, I am surprised that this doctor felt confident offering you such a rare diagnosis outside of his/her specialty. Sometimes we (and I don't mean you specifically, but we in general) tend to believe the worst that doctors have to offer (while others live in total denial). It's like we are suddenly being confronted with our worst fears that there is something truly wrong with us. But bad news is not always accurate news. My sister had a doctor tell her that she was going deaf at a really fast pace when in fact she just had a wax plug. I also have a friend who was told that she had renal failure and needed to get on a kidney transplant list immediately. It turns out that she just had a sodium imbalance that was easily fixed. Fasciculations occur for different reasons, not just ALS. But I would be skeptical of a doctor who said that you 100% did not have ALS, simply because 100% is a rather overly-confident assertion. I'd settle for 99% any day.
 

AHands

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I also have an elevated CK it has gone from 167 to as high as 323 (the norm being under 200 depending on the lab) in the last year.

While the 200 is the upper end of what the lab considers "normal" serum CK, 500 is only considered "slightly elevated". I think "high" levels are up in the tens of thousands. I wouldn't worry about 323, unless they tell you to do something about it.
 

Icanmanz

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Karin, I am so sorry for what is happening to you. All we can do is keep praying. Keep us posted. We care about our new members. We just love it when we get new members, and then they tell us, "No Als!" God bless!

Irma
 

pmbenb83

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Karin,
I hope your appointment on Wednesday goes well. I'l be saying extra prayers for you and your family. I know all too well what you are all going through. My MIL passed away last February from lung cancer and my SIL just passed away Dec. 27th from liver disease. Through all of this grief, my husband is having all these horrible symptoms too, which I sometimes wonder is related to the stress that he has been under.

Regarding your question about an elevated CK, this is a good question that you should ask on Wednesday. There are 3 different kinds of CK that our bodies have. One is for our brain CK-BB, one is for our heart CK-MB and one is for our muscles CK-MM. When CK is elevated and yours is only slightly elevated, which isn't terrible, it just means something is going on. There are many reasons this can be elevated.... possibly your thyroid is causing it (?), exercise or physical activity, a muscle injury, etc. before the blood test.

Have they checked you for a viral infection? GB, Guillain Barre, is something that comes on pretty quickly from a virus and is treatable. The neuro is the one you could ask about this too. There are so many possibilities. Keep your head up! :)

Take care and please keep us posted.
Pam B in Va
 

tee5

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mamaoftwo, do you have any updates on your condition. My symptoms sound exactly like yours. I have thumb pain which comes and goes more on the right hand then left, Twitching in my calves but sporadically all over includiing left eye. Would love to hear from you.
 
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