NO diagnosis...worsening conditions.

[Guest]

Hi everyone-
Some of you may remember I posted here a few months ago, indicating problems with hand dexterity, face muscles feeling week and strange nerve like pain. About 8 months later, 2 limbs EMGs, head MRI, CT scan of chest, battery of blood work, (all negative) I ended up at MGH in Boston, where I will undergo a muscle biopsy - the one thing not yet done - on Monday. Since our beloved Joel left us, I stayed away from this site hoping to help my health with more positive thinking. Unfortunately, in the last two months I got much, much worse. Wrists, hands, ankles and feet, shoulders and knees, plus the right pectoral and buttocks are all affected by loss of muscle mass. To be more clear, I see lines around my knees that go up my legs and little holes, two small "canals' as large as a pinky across the shoulders, two "holes" where the deltoids (back) should be, little dimples around my hips, etc.
There is no doubt that I have a condition causing muscle wasting as it is sure that I have very frequent fasciculations (all the time).

The positives are:
No ALS diagnosis
No Babinsky reflex
No Hyperreflexya
No Autonomic Dysreflexia

I wonder in particular whether the pattern I experienced is typical of ALS. In retrospect, I think my symptoms started with occasional shooting pain in my thigh lasting months. After a night of violent pectoral twitches, I noticed pain in my shoulders and buttocks, then loss of pectoral and gluteal muscle first, after which the problems with my hands started. As of today, I have use of all limbs, just get tired very quickly and walking is becoming a real effort. Yesterday for the first time I observed the muscle between the index and thumb fasciculate, in the way that makes only the skin rise. It made me feel like the window of opportunity for other possibilities is almost closed.

Wright, I know you are the "expert" on EMG. What are the chances that, given this sudden turn for the worse, my next one will be positive?

I send my love to you all.

Alfonso

 

[Guest]

Alfonso, I'm so sorry this is happening. As you know, I'm no expert, but you still remain mysterious to my thinking. It really does not sound like any person's onset I've heard of. I hope you find your answer, or perhaps a virus which clears on out of you.

Love.
Ann

 

[Guest]

Nothing you describe sounds like mine at all. It does sound scary none the less. What did your doctors think it might be?
Prayers for you that you may find out what it is and get it fixed soon.
Big Hugs,
Marta

 

[Guest]

Hate to tell you, but none of your symptoms sound like any ALS onset I've ever heard or read about. And the fact that you aren't substantially crippled nearly a year later in the areas that were first affected points away from ALS as well. Given that your previous EMGs were normal, there's no reason to expect that the next one won't be normal as well, which is probably why your doctors want a muscle biopsy.

Don't know what you've got, but it doesn't sound like ALS. Hope they figure it out soon. Good luck.

 

[Guest]

I agree with the others. Especially the fact that in almost a years time you still have use of limbs. Also, I notices you used the plural to describe all affected parts. In ALS it would be left wrist, left hand, left ankle and foot, left shoulder, ect.

 

[Guest]

Hi

The one thing lacking from your post is the results of your testing and the opinions of your doctors.

I went back and read your 'onset' timing. Did you know that there are a LOT of people with fibromyalgia that get the syndrome after an infection of some sort? (Or an injury)

Fibro can cause a lot of the sensory/pain/feeling weak issues you describe.

One of your older posts mentioned a pinched nerve I think--how was that determined? MRI? EMG? (I'm assuming your EMGs were clear--and if you've read here much you know clear EMG = no ALS)

Your reflexes were fine--so no apparent UMN issues on clinical exam. EMG clear so no LMN issues detected.

All that doesn't mean that something isn't explaining your prolonged issues--it just makes the likelihood of it being ALS about non-existent.

Are your lab values that show muscle wasting elevated? Has a doctor seen actual muscle wasting or are you seeing it?

If a DOCTOR sees it--then it's their job to track it down. If they aren't seeing it--perhaps you've become too hyper-aware and are looking for problems that might not be there? Or are you doing less and loosing muscle mass from less activity?

I hope you get sorted out--but after this long, there would be progression to the point of some major level of loss in at least ONE area by now, I'd think--an arm or a leg, etc.

 

[Guest]

Thank you to everyone for taking the time to read and reply.
In answer to your questions: In New York Doc. Lange who last saw me about 5 months ago, noticed muscle waste on my right pectoral. His opinion was that I had some sort of Immune-mediated disease. He tested me for Multifocal Motor Neuropathy with Nerve Conduction studies, as well as an EMG which all turned out normal. His approach was to wait and see before doing anything else.
Doc. Cudkowicz from MGH in Boston, agreed on the muscle waste. She ordered ore tests related to muscular dystrophy and looked for a possible vitamin deficiency. Results were negative, at which point she ordered the muscle biopsy and said that she thinks this could be a caused by a virus.
She hasn't seen me since May and my condition since has deteriorated exponentially. At the moment the atrophy is evident in other places on my body. Even though no doctor has made that assessment yet, it is obvious even to the untrained eye.

I know and am counting on the fact that some things, such as the nerve pain I have, don't fit the ALS profile, as well as important tests such as the EMG. In fact, I could not function without the Lyrica and the anti inflammatory meds I was prescribed a few months ago. However I am concerned that if all other tests fails to identify a problem, the only possible diagnosis left will be some ALS variant.
I'm comforted (and that's how bizarre life is) by the fact that right now many parts of my body seem to be degrading at once.

Thank you very much for responding to my posts. I wish you all a peaceful and comfortable weekend.

Alfonso

 

[Guest]

Alfonso, my understanding is that neurology has the highest percentage of all undiagnosed diseases/conditions. Whether that is a comfort or a curse is debatable, but please don't conclude that this will end up as MND due to the length of time you aren't diagnosed. It took a good two and a half years between my first noted weakness and my diagnosis, yet in hindsight the progression was very normal, unlike yours.

I ache for you as you wait, but have much hope for your eventual healing.

 

[Guest]

Your neuros are the ALS neurons? My other 5 normal reuro docs said I had arthropy below the little finger and between my thumb and index finger. I see the difference in them,but my newest, neuro ALS specialist said that this was no arthropy. Don't go looking to close to your body, our bodyparts are not all of the same size and shape. I do to have all this happening to me,weakness, starting in my left hand,now left leg,and 2 mounths ago in started in my right hand, with endless fasics. My ALS doc told me that I don't have ALS, thank good. The only thing I have on the neuro exam is brisk reflexess,but he said that they are only important when comp. with other symtoms. For me I rather have No diagnosis then to have ALS diagnosis. So I DO NOT HAVE ALS, even with all my symtoms. Get that EMG done by an ALS specialist. But sometimes there is no answear to the mysteries and we are many one here with many symtoms simular of ALS but with no diagnosis. wish you all the best.:razz:

 

[Guest]

Once again, if the symptoms you have are the same symptoms that you've had all along and your previous EMGs were clean, there is no reason to expect that your next EMG won't be just as clean. LMN symptoms, the kind that the neuros look for on the EMG, show up on the EMG long before they become serious enough for you to notice. You had weakness and atrophy in May with a clean EMG, which eliminated LMN disease as the cause. You don't have any UMN symptoms -- no hyperreflexia, no complaints of stiff muscles or spasticity, etc. If you don't have LMN symptoms or UMN symptoms, what gives you the idea that you have ALS or any other motor neuron disease? Muscle disease, probably, but not likely to be a nerve disease.

You really should get over your paranoia about ALS and accept the fact that there are other conditions and combinations of conditions that can explain your symptoms. If you really knew as much about ALS as you think you know, you wouldn't be here worrying about ALS.

 

[Guest]

I don't get how some people have EMG after EMG in short succession, with no indication after the first. Ok I understand when a year or more has passed, but some people have sooo many. The neurologists are making a fortune out of poor anxious people.
Listen to trfogey, at least he speaks sense.