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Karin Joy

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Hello everyone!

I just got back from the Endoncronologist and he basically told me that the twitching really is not a symptom of being Hypo - more a symptom of Hyper.

If you read my story when I first posted, I can say now that I am very weak in my left leg and left arm. I have had some serious craming in my hands and have noticed that my left hand certainly looks a lot different than my right - I know that I am right handed - but I can see the difference.

Al - I have read on here that it has taken some perople years to ge a DX. I have had the elevated CK level for a year now. How long did it take until you were disgnosed? Did they peform an EMG early on? My symptoms have come and gone, but this time they are not going away.

I usually am preety in tune with my body, and have not felt well in over a year - dealing with this. I am not a hypocondraic - I really just want to be well, but I fear that I have ALS.:cry:
 

wright

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You said that you have hypothyroidism, which means that you are taking artificial thyroid hormone to keep the levels high enough in your body. If for some reason your meds are not becoming stable in your body, you could very well have elevated levels. This can happen when being on a certain med for a prolonged period of time. You might have to change to something different. Just a thought, so don't jump to any conclusions.

As another note: even if your thyroid hormone levels are fine, it doesn't mean the weakness you're feeling has a thing to do with ALS. If you have been on this forum for any length of time, you know that many things can cause weakness and many things can cause twitching.

Do your best to relax.
 

Karin Joy

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Wright -

You are such a godsend - I was hoping you would answer me - I was just reading your posts and I read that you do not have ALS.

In your opinion, I have had two EMG's and an NCV done - they both came back normal. Is it common to have a normal emg and later on be diagnosed with ALS. I am so stressed over this I am almost scared to read anymore.

Should I schedule another EMG?

Karin
 

wright

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No, it is not common to have clean EMG's and then have ALS . . . that is . . . if they are done properly and thoroughly. Can it happen, yes . . . but it is not at all common if the lower motor neuron signs are present. An EMG done very early could possibly miss something, but again, not very likely. When hearing of clean EMG's initially with ALS and then a later diagnosis of ALS, it is almost always because the person presented with upper motor neuron signs, which cannot be detected by EMG. So if someone has PLS for example, their EMG will basically be clean.

I can't tell you whether or not to get another EMG . . . that is up to you and your neuro. However, in my opinion, your symptoms don't warrant it if you have already had two of them and they were clean.
 

Karin Joy

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I also forgot to ask about problems with phlem - I always just thought it was a lingering cold. I am always clearing my throat - is this a symptoms with ALS?

My CK levels have only gone to 323 normal being (170). Do they test for CK level with ALS?

They have been testing me for that for over a year now - I just had bloodwork done today - should be interesting.
 

wright

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It sounds like you have allergies.

As far as CK levels: in the beginning stages of ALS they can be normal or slightly elevated . . . and greatly elevated once muscle atrophy is more extensive later with ALS. It really isn't used to diagnose ALS, but more to test for other diseases and syndromes.
 

MtPockets

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For 2 years before I got severe symptoms of ALS I had high levels 800 to 900 average. They would put me in the hospital every 3 months to give me iv's to flush out my kidneys.

When my levels went to 3000 my kidneys shut down. All this was when I was barely able to notice any fasciculations in my leg muscles. That came on strong later. It may have had nothing to do with ALS; as many I have talked to over the years also had normal CK levels and still had the fasciculations. Weird huh?

Karen, the site I listed has this quote,
"However, the normal function of CK isn't as relevant, in this case, as what happens to CK when muscle is damaged. During the process of muscle degeneration, muscle cells break open and their contents find their way into the bloodstream. Because most of the CK in the body normally exists in muscle, a rise in the amount of CK in the blood indicates that muscle damage has occurred, or is occurring."

Also this one,"Higher amounts of serum CK can indicate muscle damage due to chronic disease or acute muscle injury. For this reason, if you're scheduled to have blood drawn for a CK test to diagnose a potential muscle disorder, you should limit your exercise to normal activities before the test.

Any strenuous activities may throw the test off. I hope this helps.
 

Karin Joy

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Dear Wright and Al -

Thank you so much for your posts - I so hope that you both are correct. I hope that the phlem buildup is just allergy related.

Al - did you have cramps in your leg ever? For the past few weeks, I have had terrible fascs and now it has turned into an annoying throbbing pain/cramp that is constant in my left leg and I am having trouble walking on it.

I will keep you posted on my CK level when I get the results - probably next week. I am going to the neurologist tomm - she will probably schedule me for another EMG. So would it be safe to say if I have another EMG and it is normal I am clear? I am scared to search on here - and I mean no disrespect in any way to people who have this horrible diease - I just want to be here for my beautiful girls. I just lost my mother in law to pancreas cancer in February - don't know if I can take much more.:cry:

K
 

MtPockets

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Just like I had the cramps in my foot, it eventually spread to my calves, thighs, and now my arms and neck muscles. The cramps came after a fairly long period of the fasciculation's, Why I do not know.
 

Karin Joy

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Al -

I am afraid that scares me - I just had my Thyroid results faxed over to me and they were normal - I have the bad cramps in my thenar muscles and non-stop twitching in my left leg/thigh/calf and occassionally ramdom twitches throughout the body. I wish it would all go away - what also scares me is that people have had normal emg's and later to find out they have ALS - maybe my EMG's were done too soon - I have one scheduled for the 28th - I guess it is all just a waiting game. I am making myself sick in the meantime!

Karin
 

theo

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Hi Karin,

My thyroid was removed last year and I had all related treatments including RAI and I am on 150mg synthroid.

I have had many complaints like muscle weakness, stiff hands, numbness in legs and feet etc and I had 4 EMGs and 2 MRI. Only my last EMG showed polyphasic MUPs in my legs and myopathic process of unknown nature but docs told me not to bother because it could be anything..

During the times I had my last EMG I could barely lift my left leg (and it showed slightly increased denervation than the right) but now I can make a run non - stop with my full energy back..Instead ı am having new symptoms now like numbness and tingling in my feet and stiff hands..

There was a time when I reduced my daily synthroid dosage to 125 and I felt great comparing to my current situation..But never stabilized until the surgery.

My TSH is kept on 0.01 now it is simply Hyper..Docs do not want to reduce the dosage now in order to prevent cancer from reoccurring..

So keep in mind that your labs may be defined in normal ranges but I think it is more important what dosage you are using and how you feel and reacting to it..I made an extensive research and I have seen many people whose thyroid glands are removed and they are experiencing muscle issues just like us..It may even impact your EMG..Some people are sensitive to thyroxine and each person reacts differently to drugs.

On the otherhand I would like to ask to senior members here : Even I had a dirty EMG in my legs 5 months ago ( at that time docs said it is OK now - come back for follow up) now I do not get any weakness as before and many of my main complaints are gone and replaced by more sensory stuff..

Does ALS come and go this much..Could I still have ALS under these circumstances?

Thank you all,

Theo.
 
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