Old 08-19-2008, 06:22 PM #1 (permalink)
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Hi...I have not posted for a while. I've been having a great summer enjoying my two precious kids and trying not to focus on my health (easier said than done). I have been reading posts when I can and praying for everyone here.

Anyway, I'll cut to the chase. My symptoms started last fall with weakness in hands. My entire left arm feels weak now but is not "clinically weak" according to my neuro. I started twitching in March and I have a lot of stiffness. I also have hyper reflexes. My latest symptom is a tight feeling in my tongue (on the bottom) which causes me to not speak as clearly as I used to although no one else has noticed so far. My tongue is also scalloped which my neuro said is not a symptom of any neurological disorder. Has anyone heard otherwise?

I had clean bloodwork and EMG in April. I just had another EMG two weeks ago at the Univ. of Colorado Hospital and it was also clean. So, I'm just looking to tap into the awesome ALSforum insight. I am still completely scared that this is ALS...what else could it be? Like many of you, I have two young kids that depend on me. Do two clean EMG's rule out ALS completely? The latest EMG was done on my left arm, left leg, and left hip. Has anyone had luck with a rheumotologist? I would appreciate any input and thanks.

Tracy

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Old 08-19-2008, 07:21 PM #2 (permalink)
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Hi Tracy,

How old are you kids? I have been having a great summer (all things considered) with my family also. I try to savor every minute!

This is soo hard isnt it? I started last fall also. Do you have any thinning of your muscles? I have brisk relexes also. The tongue thing is tricky. I have not seen an als tongue. I thought/think that i have scalloped tongue. I have little marks up front on the left side wich is the weaker side. The neuro saw it and said that it is not scalloped tongue, that it is from my teeth. I looked and rested my tongue and it fell right into the scalloped parts inconjuction where my teeth were. My tongue had that tight or pulling feeling and it actually feels big in my mouth. So I dont know what to make of that. I feel like my words are not as crisp as they sould be but everyone thinks it is fine, so it must be.

Inregard to a rheumy, I started there. I thought all this was RA or some rheumatic thing becasue with weakness I had alot of ache and pains that felt like arthritis. Nothing really showed. Had some elevations not enough for diagnosed and most things were ruled out. I called my neuro prior to the muscle biopsy and told her I felt I was gettin worse and she told me to call my rheumy! she feels that some mixed connective tissue disorders can not show up in blood work for awhile (convienent). so I made an appt this week to appease her and I will bring the results with me on the 27th when I see her.

I have a clean emg also. We will see what biopsy says, and I get a repeat emg in sept. SHe wants to follow me every 3 months for 2 years. I will be more aggressive with her on the 27th as my symptoms seem worse. she thinks that it could be MG or polymyosotsis (even though I have brisk reflexes). So, if that is the case then give me the medicine for that and lets see if it works. I have 3 kids that need me and with the school year, I am going to be so busy.

This is hard when you have young kids. I am not saying that it is not with older kids or no kids but when you have those little faces depending on you and needing and loving you, this can be torture.

speaking of little ones, I am going to go get into bed with all 3 while my hubby golfs and roll around and cuddle and just love them.

I wish you the best and I understand it COMPLETLY!

april
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Old 08-19-2008, 09:48 PM #3 (permalink)
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Get tested for Lyme disease. Its a strong possibility and you must rule it out.
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Old 08-19-2008, 10:34 PM #4 (permalink)
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Hi guys. Thanks so much for your quick response.

I have been tested for Lyme's and it was negative. Clint...you were diagnosed w/Lyme's if I remember correctly. How are you responding to treatment? I hope you're better.

April, I'm sorry to hear that you're in limbo too. I don't have muscle thinning that I can see...just the weakness, cramping, and fasics. I love that you're curling up with the kiddos. I do that too and it always makes me feel better.

I am encouraged about the clean EMG's and I hope I don't sound paranoid. I just know that the EMG is not always a perfect test and I can't imagine what this could be and I'm not getting better. I hate being in limbo but I am thankful that I don't have an ALS diagnosed at this point.

My neuro feels that if this was ALS I would have more pronounced weakness after almost a year of symptoms. Any comments?

I'm grateful to have this place to come to when I'm down.

Thanks.
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Old 08-19-2008, 10:40 PM #5 (permalink)
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April,

I forgot...my kids are five (girl) and eight (boy). Five year old starts Kindergarten next week. That should make me a weepy mess!

Tracy
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Old 08-20-2008, 02:21 PM #6 (permalink)
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Hi Tracy- our situations are similar except that I've been at it longer than last fall. I now am showing poor results on my Pulmonary function tests, but since my athropy and weakness has remained the same, I am leaning towards MG.

I used to think, "what else could it be?" But then AL pointed out that 50% of the time, MG will not show up if tested too early. SO, you, see, there is still hope! Take care, Cindy
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Old 08-20-2008, 02:45 PM #7 (permalink)
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Thanks Cindy. My grandmother had MG...is there any genetic link that anyone knows of?

Cheers!
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Old 08-20-2008, 03:00 PM #8 (permalink)
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I heard it can be congenital but you would know that from birth. It is also auto-immune, which means if we have it we will have something to deal with but it is not life-threatening, so I don't care!
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Old 08-20-2008, 05:29 PM #9 (permalink)
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Hi Tracy....I hope you can find answers to your troubles soon. I have no answers yet, but thought I would ask you and Cindy about symptoms of MG.

None of my doctors have tested me for that. Does it cause fasciculation, thinning of muscles. Atrophy, weakness and denervation? Fibrillation?

How do you get tested? thanks for taking the time.

take care
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Old 08-20-2008, 07:02 PM #10 (permalink)
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Hi All,

I have been hoping MG (still am) and my neuro even suggested it. But, from my research (very limited) that brisk reflexes dont go with it. I went on a MG forum and some of them had twitches. Alot of my symtoms came while prego and then after a GI infection, so I hope autoimmune. I should know a little more after the 27th.

good luck all!

april
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Old 08-20-2008, 09:11 PM #11 (permalink)
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Quote:
Originally Posted by lovelily View Post
I would ask you and Cindy about symptoms of MG. None of my doctors have tested me for that. Does it cause fasciculation, thinning of muscles. Atrophy, weakness and denervation? Fibrillation?
How do you get tested? thanks for taking the time.
take care lovelily


Hi, Lovelily ... I'll jump in and add a little, as I "had" MG for a few months (was diagnosed with it in January and then, alas, rediagnosed in May with ALS!)

It's an autoimmune disease, caused by antibodies released by the thymus gland. It often (not always) involves eyesight (double vision, blurred vision, drooping eyelids), usually some bulbar symptoms, shortness of breath and profound muscular weakness. It can be extremely debilitating but is not fatal except when there is respiratory failure ... what is called "Myasthenia crisis," when the lungs shut down. (I had that in December, which is why I was diagnosed with it, plus other symptoms, such as double vision.)

There are three antibodies that are known to cause it, but they do not account for all cases. About 7% of MG patients do not ever show any of the three antibodies, but they are diagnosed because of their clinical symptoms.

They test for it by doing blood tests for those three particular antibodies. If any of the antibodies show up, it's a certain diagnosed. If they don't show up, it does not rule out MG, because not all MG patients have those antibodies.

Sometimes, it is caused by a tumor of the thymus gland (rarely malignant), which can be removed, and complete recovery usually follows (recovery is more likely in young people).

It can be treated symptomatically by a med called Mestinon, and the disease itself can often be reversed by suppressing the immune system, or blood transfusion type procedures. Requires big time drugs and is a long difficult course of treatment ... takes years ... but treatment can often achieve complete remission.

It causes denervation that will show up on an EMG, and (I understand) cannot be distinguished from ALS denervation.

However, it does not cause muscle atrophy or fasciculations. What happens with MG is that the brain remains healthy and continues to send the correct messages to the muscles; the muscles remain healthy, and able to receive the messages from the brain; but the immune system produces an antibody that does not let the messages get through. Thus, when they suppress the immune system and get rid of the antibody, the brain and muscles are able to connect and perform normally again.

The MG Association has very helpful information online. This is another rare disease that needs public attention, and isn't getting it.

Sorry this is so long. If I got any of the above information wrong, blame it on my FTD!

And good luck, April ! Hope you get good news!

BethU

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Old 08-21-2008, 09:57 AM #12 (permalink)
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Thank you Beth, for that most comprehensive explanation about 'MG'.... After reading I guess I am really not fitting the description of symptoms. I do have double vision, but it is from past CVA due to a clotting disorder.

I had profound weakness from the stroke, and was not recovering. That is why initially I had first muscle biopsy.

Thanks for taking the time to answer my question!

take care
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Old 08-21-2008, 10:42 AM #13 (permalink)
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Hi again, Lovelily ... MG doesn't always involve the eyes, and it is something that neuros should consider and rule out before they diagnosed ALS. There is a lot of overlap of symptoms.

Hang in there.
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Old 09-10-2008, 03:46 PM #14 (permalink)
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Hi all. I am back to my previous thread because I have some new information and would love some more insight.

I posted last week that I was in the E.R. twice last week with shortness of breath and tachycardia. The tachycardia hasn't returned (and docs don't seem too concerned although I will wear a heart monitor) but the shortness of breath has continued. I have had this symptom off and on for quite awhile. First, weakness in hands then shortness of breath then fasics started. Shortness of breath has been off and on and docs never seem to know what to make of it. Went to my GP today because of shortness of breath and he did a lung capacity test and I scored poorly. I guess I should have had a 498 and I had a 330. He referred me to a pulmonary doc but I can't get in until Nov. So, my hubby called neuro and left a message that we need to fast track this and figure out the connection (if any) because I am a wreck.

Anyway, does anyone have thoughts. Beth, you said you had an MG crisis. What does that look like?

Any help would be great. Thanks.
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Old 09-10-2008, 05:53 PM #15 (permalink)
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Hi Tracy

I can relate a little. I have SOB and have since pregnant. I thought it was just that but never went away and never been soo bad that I was overly concerned. It comes and go's for me, not constant. I have a little thing I blow in and I dont do all that well either. when you see your pulmonary doc ask if he can check out your diaphram.

Take care

april
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