Old 01-08-2010, 01:41 PM #1 (permalink)
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Exclamation Need advice please

Hello to all - this is my first time posting although I have been on here for sometime - never wanted to post because of fasics but I seem to be having additional concerns now.I just want to say to everyone that is dealing with this disease that my heart goes out to all of you and i am awed by your positive attitudes (AL, JOEL, ROSE,CINDY and many others!- I really never knew about this disease till i started with fasics in aug 09 after a kidney stone in June and dizzy spell with blurred vision that sent me to the er one night in July.After clear ct scans.Mri and Mra - my neuro told me no neurological problems found - so off I went,but still didnt feel right - started with the fasics in my calves around Aug 23 and also have them in my thighs but not as intense as calves - went back to neuro in late Sept - told me most likely benign but too soon for emg - Around oct I started having pain in my Left buttock and fasics but waited till Dec to return to neuro - told him my concerns - sent me for lumbar mri and scheduled emg for Mid december - Mri showed compressed disc at L5 and emg on both legs,lower back,left buttock and rt hand. fasics noted in calf and thigh but otherwise emg was clean - He said no ALS and the buttock pain was coming from nerves or sciatica.Well 3 wks later I still have the buttock pain and now have pain in my groin when sitting - feels like the skin is being stretched and i noticed a lot of loose skin on both upper thighs around groin -buttocks appear normal but not as toned and feels like I lost muscle here. Has anyone ever heard of atrophy in both inner thighs and buttocks as a starting point? Could the emg have missed something or maybe the right muscles were not tested?My neuro did the emg himself and said denervation would have shown up everywhere...Not sure which way to go with this - could something else be causing this? I know your not doctors - just looking for advice - getting very scared from all this! Any input appreciated...thank you all..............Larry
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Old 01-08-2010, 07:20 PM #2 (permalink)
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Default Re: Need advice please

Anybody have some input?
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Old 01-08-2010, 07:53 PM #3 (permalink)
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Dear Lark,
I'm sorry you've been having such painful and uncomfortable symptoms. We (my husband and I) are new to this journey as well, and the best advice I can offer is to make sure the neurologist you are going to is experienced with MND/ALS... One of the PALS on the forum may be able to speak more to your specific physical experiences-I can't. I'm offering that advice just from a "new to the diagnostic nightmare" perspective.

Peace,
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Old 01-08-2010, 07:54 PM #4 (permalink)
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Sorry-Meant to type in your actual name...
Be well, Larry.

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Old 01-08-2010, 08:09 PM #5 (permalink)
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Thankyou Melody for your input - sorry you,your husband and family have to deal with this disease. May god bless and carry you all ,..... I too have an 8 y/o boy and we always want to protect the ones we love - esp children... Larry
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Old 01-08-2010, 08:32 PM #6 (permalink)
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Thanks...since you've been observing the forum for awhile, you already know it's an amazing group of people. The PALS will give you honest, straight up feedback. As a CALS, I am thankful for the perspective of the other PALS, and the other caregivers on this forum are an incredible group also. The people here have become an extended part of my family.

Talking to our children has been a TOUGH part for us. So far, all we've told our son is that " daddy's muscles get tired fast, and the doctors are doing all these tests to help us figure out why". We have made the choice NOT to talk about ALS/MND to him yet-maybe in part, because we want to hang on to the last possibility that it could be something else, as long as he has ANY kind of diagnostic tests to go through. We did tell my twin girls who are 19 though that he has been diagnosed with MND and it may be ALS, but that we are still trying to see if it could be something else.

We have tried to stay focused on "finding the blessing" and there has been- this process/diagnosis has removed what I refer to as "all the white noise of our lives"...less worried and focused on the day to day bs that takes our energy and more focused on enjoying the moments and finding the joy.

I would encourage you to try to do the same. This may be a long, confusing, complicated process with no clear answers for quite awhile, and it's really easy to get sucked into the fear, stress and worry as well.

Look forward to you being an active part of our community!

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Old 01-08-2010, 09:10 PM #7 (permalink)
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Default Re: Need advice please

Hi Larry. I can't say I've heard of thighs and butt being a starting point. The Neuro doing the testing himself is usually a good sign. Usually reliable results. I'd be thinking more along the lines of the disc problem than ALS. You could always get a second opinion. Frrom a real doc rather than here.

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Old 01-09-2010, 10:52 AM #8 (permalink)
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Default Re: Need advice please

Larry,
Its actually encouraging that the mri showed something, as it gives your doctors something concrete to investigate. Try not to let the fascis worry you, they are caused for a myriad of reasons other than ALS, and the EMG would have picked up it.

There are some neuromuscular condition which typically start proximal (up close to trunk of body) rather than distal. I don't know much about them, but, in contrast, ALS usually starts distally, the hand or foot, rather than upper thighs and buttock. Either way, from what you've been told so far, you're looking at disc problem, rather than disease of nerves.

Have you read tag0620's posts? Her husband went through an incredible ordeal from a compression in his thoracic spine. He originally was mis-diagnosed with ALS. Eventually, due to much tenacity on Tracy's part, they were able to have a better evaluation done, and the true cause found. (calcified herniated disc T6/T7 ) I think he ended up having to have open thoracotamy surgery, and is yet on the long road of recovery.

good luck to you, I hope your diagnostic journey is short, the cause is fixable/treatable and you are able to find some relief from the pain.
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Old 01-09-2010, 11:34 AM #9 (permalink)
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If I was correctly diagnosed (still think its a bit of undigested beef...) with PLS, it started and has stayed thus far in proximal muscles.
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Old 01-09-2010, 03:22 PM #10 (permalink)
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Melody,Al,Rose and Zaphoon -Thank you all for your responses - I have been on this site for sometime and I have read posts from all of you and all I can say is what a wonderful group of people you all are along with the many others at this site.
Rose and Al- I will look further into the back problem - hopefully that is where all the trouble is stemming from - I am going to try getting an appt with a neuromuscular specialist - my own neuro who told me i dont have any signs of disease recommended this route if only for piece of mind,but he seemed confident with his diagnoses and recommended therapy for the back issues - the only problem is everytime I try exercise my backside hurts even more and I am afraid that if they missed something I may be causing more harm to my nerves and muscles.......
Will keep you all posted - thank you all again
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