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question about diagnosis process

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fallinggirl

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I am in the process of being diagnosed with whatever it is I have! I thought MS, nothing points that way at this point (after many tests), MG was next, just had the official "it's not MG" today. (single fiber EMG).

I am curious as to ALS.... with it, how are you diagnosed?! Does everything else come back normal? Or is there some sort of test(s) to confirm?

Thank you for any insight.
 

Rami

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Well the process of diagnosis usually starts with a general clinical neurological exam which access your ability to do stuff, eg reflexes, strength, balance, signs of atrophy, ect, ect. Since you have been queried as having MS and mysthenia Gravis, I would assume, you have already been through this stage and shown some evidence of weakness and diffculties with co-ordination. Generally you will undergo an MRI to rule out thing like MS. The EMG would show whether or not the is active and chronic denervation, exposing any FIBS, PSW and FASICS. There is no specific test like a blood test or a clear indicator. It is the accumulation of results from tests and clinical observations that are used to formulate a diagnosis of ALS
 

notme

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Bloodwork to rule out deficiencies and the like. MRI and maybe a spinal tap to rule out MS. both of the brain and spine.

Neurological exam, as stated above, and, the only test that can diagnose ALS, an EMG.

What are your symptoms, though?
 

fallinggirl

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Yes, I have been through Brain MRIs, Spinal tap, blood work, etc.

My right leg feels like there's a dented in place, as if I just don't feel it anymore. My legs are progressively not working for me. I get up, I fall.

It was highly suspected I had Myasthenia Gravis, but with the last test run, that neuro said no. (different neuro/same practice runs the Single fiber emg on my face to test for MG).

Where is the EMG run? On the specific muscle that is giving the trouble?

I also no longer speak well. It is as if I have to think about what I am going to say as I am saying it- and it is slow to come out.
 

notme

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Al's wouldn't be likely to affect your speech very soon after your legs.

Somehow we have to let people understand that dents are not atrophy. Has your doc diagnosed atrophy?

If you are falling, regardless of the cause, you need to prevent falls.

When you say your leg feels dead do you mean you have no sensations in your legs? If so, that just doesn't sound like ALS to me.

EMG would be done on several ,uncles in at least two limbs. It's ome of the first tests ordered generally. A clean EMG with no UMN issues means its not ALS. There is one test called a tensilion test (don't quote my spelling) for MG. Has it been done?

There are all kinds of things that can. Ause leg issues, everything from neuropathies, to bad discs to trapped nerves to ...well, u get the idea. The list goes on.

My legs have given out completely with no warning for several years. If its one leg, you could have damaged something from sleeping wrong and putting nerves to "sleep"

All kinds of things to consider at thisoint.
 
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fallinggirl

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I was at the doctor's office this past Thursday. She let me know that MS and MG have now both been officially ruled out. (I have had a brain MRI, lumbar puncture, the single fiber emg on the face testing for MG with the tensilon test). Meanwhile, my doctor has ordered a wheelchair and a walker. I continue to be deteriorating quite rapidly.

She has suggested I now go to Mayo here in Minnesota. I am planning to do that. The doctor wants me in Mayo a.s.a.p as she said she can tell the difference in me from just 3 weeks ago.

As for my leg... no, it's not just a dented in place. I noticed this back in May. I have not had the feeling in one area of the leg ever since. My right arm has become useless since last week. The doctor has said it appears to be atrophy.

My speech has become strange for a few weeks now. I first started noticing that I was saying the wrong pronouns, but now I have to think before I say anything and then it even comes out labored.

My neuro asked me about my shortness of breath back in June. I use a bi-pap every night due to sleep apnea, so am wondering if it would be helpful some during the day while sitting up.

I also can not eat anything without it becoming stuck. This is why MG was first suspected but then was ruled out. Just yesterday I asked for a Carnation breakfast instead of food because it's just too hard now. I am tired from eating.

I am not overly worried about it at all... it's more of me wanting to know what it is so I can somehow learn to adjust.

Thank you so much for your time.
 

notme

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Hi

Your symptoms do sound serious, but much faster than ALS would progress, which is why perhaps that an EMG wasn't done by her.

ALS, for instance, wouldn't cause you to use the wrong word, it would cause your speech to slur. And it wouldn't cause a lack of feeling in a part of your leg, just a lack of ability to use the leg due to muscle death.

I'm kind of surprised an EMG wasn't done, though. As ALS isn't the only thing it tests for, and any neuro can do one.

I've been to Mayo in MN. My only issue there was that I saw so many doctors there that none seemed to know what the other was doing. Personally, I'd see a neuromuscular specialist.
 

fallinggirl

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I should have clarified- my neuro tested for MS and then MG. Meanwhile, she herself had a medical emergency and is on leave until January. The office now says they can't see me until November (their first available with any neuro in that practice)- and so my GP is wanting Mayo to get involved because she says "waiting until November is just unacceptable." (and I quite agree at this point). I have used the wrong word, and I often slur too, that's what is so frustrating for me. My kids can't understand me at times, or get tired waiting on me to say something! (they're 13, 9 and 7).

Thanks again. I appreciate having someone to "talk" to. I have found myself crying a lot lately especially when alone. So, having someone else who understands a lot of this helps.
 

momap53

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Sorry you're going through this.
Try using your bipap for about a half hour before you eat. ( It might be a good idea to use it a bit during the day while you watch TV or read a book, in between periods of activity). Have you been given any tips for making mealtimes easier? Just a couple here. Make sure you're sitting fully upright. Tuck your chin to your chest as you swallow. There are thickeners available for thin liquids. PALS experience that thicker liquids seem to go down easier. Meds can be put into a spoonful of anything with a pudding like consistency. The purchase of a heavy duty blender might be in order. Many like Vit a mix. They may offer a small discount with a script from your doc. My dietician said that carbonated beverages may be easier to swallow initially and also lemon flavored ones.

Do try the bipap before meals. I really think it will help with that fatigue.

If you already have loss of function in limbs, please ask for a PT consult in home to teach you and a caregiver ROM exercises. A lot of pain and discomfort can be avoided by keeping those affected tendons and ligaments functioning.

Good luck at Mayo. I hope they can give you some answers. In the meantime use your equipment and avoid falls.
 

edwards5257

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It is frustrating and scary. And to not hv a diagnosis is even more so. If they could just let me know what is wrong then maybe I could learn to deal with it even though it might be disabling. Or fatal. The not knowing is what is so hard. Maybe my apmt @ the end of Oct will give me insight.
 

momap53

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If you have a smart phone there are apps available to download. You can bank a list of often used phrases that you need for the kids and just let the phone speak for you. One app is called Speak It, another is Proloqu (not sure of the spelling.) Have you checked our archives for discussions on tips to help you with some of the issues you are experiencing?
 

fallinggirl

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Thanks Deb! Don't have a smart phone, yet, but my husband has been planning to get one soon. Thanks for the info! I will check out the archives. I appreciate very much the info on chewing. That has been so difficult lately.

As I sit here, I am having short of breath- been napping this afternoon, but sure hate missing out on my kids like that. I'm thinking I'll start using my Bi-pap some while sitting up.
 

momap53

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I'm able to wear the nasal pillows which makes it easy to wear my glasses to read or just keep up with what's happening in the room.
 

fallinggirl

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It's the nasal pillows I have. I tried 2 other kinds and am just too claustrophobic :eek:)
 
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