momofsixkids60

Hi Kimberly,
Emotionally I'm doing great. Physically it's tougher as time goes on. A steel rod to hold my body and head on would seem appropriate! Neat that your parents have a farm in Snow Hill. My paternal grandmother was raised on a farm outside of Snow Hill. Small world!

I was diagnosed at Hopkins. My problem was in one leg (dropfoot) beginning 11/04. 80% chance it was nerve entrapment. So, a CT scan was done around 9/05, an MRI, then a wait. 9/06, the first EMG, inconclusive. In 12/06 there was the first hint that the other leg was getting weak, but lack of exercise was a questionable excuse by that time. By 7/07 when I went back to Hopkins, I had plenty for them to look at. The EMG showed involvement through both legs and up into the thoracic area, and I had very hyper reflexes where I wasn't paralyzed. I could have gone back before July, Kimberly. I hope you don't get the diagnosis, but will learn soon rather than later what yours is.

Very best wishes,
Ann

Never stretch beyond the point of pain, so be patient with it. Do it a few times a day, every day and see if that helps. The whirlpool is a good idea too but make sure you drink a lot of water because it's easy to dehydrate with that heat. The university where I work does have a medical school. I teach both at the undergraduate level and in the medical school.

That's funny you mentioned the stretching, because I started stretching exercises at the local Y on Tuesday with a friend who has fibromyalgia. My body hasn't enjoyed it as much as I have but I am going to give it some time to see if it helps. I think I overdid it yesterday because today I couldn't get out of bed. The one thing I am planning on is using the whirlpool and sauna. Someone mentioned that it might help. Oh and by the way, I am a stay-at-home mom for the last 23 years. I used to teach at a community college in MD. I understand you work at a University - is it one that is connected to a Medical School? The reason for asking is you are so knowledgeable.

I think until they get to the bottom of what is causing your symptoms, the best thing for you is to manage your symptoms . . . and manipulating the meds you are currently taking or getting new ones is the best way to do that. It is up to you to determine if the cost is worth the benefit. Has anyone mentioned physical therapy to relieve some of your symptoms? You might look online yourself to see if there are any types of movements and/or stretches that can help. Have you also thought about drinking tonic water? Tonic water contains quinine, which can help alleviate cramps.

It seems that the first two times you had symptoms, there was something that triggered them (vaccine and pregnancy). Can you think of anything that occured this last time that triggered your most recent symptoms? Now certainly what happened to you when you were eight and 24 could have absolutely nothing to do with what is happening to you now but it's worth investigating. Have you been seen by a rheumatologist to look at any autoimmune conditions? That could be the root of the problem. I'm also wondering if the neuro's have mentioned mitochondrial diseases. Given that the new neuro wants to do a muscle biopsy, he/she could be thinking along those lines. Speaking of a muscle biopsy: I would discuss it fully with the neuro, so you are completely informed about the procedure and if he/she truly feels it's worth it.

The neuro at MCG wants to do a muscle biopsy, I also had a blood test for the PC but have not received the results. Neg for stiff mans syndrome, small cell cancers, 2 MRIs: 1 neck, 1 cervical. The first dr wanted to do botox in my neck but the new dr hasn't mentioned it yet. I am going to the fam dr this afternoon to see what correspondence he has received from either dr. I know botox treatments would probably help but after seeing what happened to my sister, I am a little leary. I am also worried about the muscle biopsy; was told there would be no medication to numb the place where they would do it. I'm no wimp and can handle pain but I'm not too sure about that. Also, my first diagnosis was with Johns Hopkins; but when the the symptoms disappeared after her birth, I had to question the diagnosis. Any other help is greatly appreciated.

I'm terribly sorry to hear about what is happening to you and what has happened to your children. My thoughts are with you. As far as your condition: it's apparent that your meds aren't helping you, so you should tell your doc and he/she will either change the dosage or put you on something else. It could certainly improve your symptoms and your quality of life. Have you gotten any type of definitive diagnosis other than "myopathy?" Did your doc discuss what is next?

Hello again. I'm a bit confused about your diagnosis of paramyotonia congenita when you were younger, because the word "congenita" means you are born with it. Symptoms should present in infancy and they shouldn't go away. Did you have any type of symptoms growing up or did it all of a sudden happen when you were pregnant? Did your symptoms completely disappear? Do your symptoms appear to get worse with cold or exercise or stress? Since you have had these new symptoms, have you had any type of improvement or are you progressively getting worse?

Normal sensory and compound muscle action potentials means that there isn't any damage to your sensory or motor nerves. The absence of any spontaneous activity means that you are not actively denervating, which is what you would see with ALS. The low amplitude motor units would indicate damage to your muscles (i.e. a myopathy). I don't put too much stock in the MEP data (it is difficult to draw any conclusions from it). Bottom line: you don't present with the EMG of someone with ALS . . . it's not even close. The EMG (as I stated) is indicative of a myopathy. Are you having weakness and muscle atrophy? If you need any further clarification, please let me know.

Findings: Sensory nerve action potentials and compound muscle action potentials were all normal in the left upper extremity. Concentric needle EMG evaluation (all left sided) noted no spontaneous abnormalities at rest in any muscle tested. In the flexor carpi radialis, flexor digitorum sublimis, and to a lesser degree, the biceps, were seen myopathic-appearing motor units (low amplitude, polyphasic) and in some areas, continuous dense firing of MEPs. However, the degree of firing did seem to abate when I had the patient attempt t activate antagonist muscles. Continuous MUPs were seen in the sternocledomastoid. Conclusions: Abnormal study. The findings in this needle study were suggestive of a myopathy. In addtion, there is evidence for continuous firing and generation of motor unit potentials that may be upper motor neuron.

I would be more than happy to look at the results of your EMG.

I'm sorry but I like to keep my correspondence on the forum. Again, once you have reached a certain number of posts, you can message me privately on here . . . or . . . maybe Al can help you if you tell him you want to private message me.

You can send me a private message. If you're unable to do that at the moment, I believe all you need is 10 posts on the forum. Message "Al" the moderator for any further help. Take care.

I hope you get my email. And thanks in advance.

I'd be happy to look, my email is tokahfang at gmail (formatted as a proper email address, obviously) but I'll warn you in advance I'm a layman. Everything I know about them I've learned in the last year, and I'm not kind of a substitute for a proper MD. But I'd be happy to try and settle your mind.