View Full Version : Good News/Bad news
Hi all you caring readers! I had my appointment yesterday at Upstate Medical Neurology. Since we all need to hear some good news about one another, I will tell you that first!
The doc said my reflexes were great! He said my weakness wasn't too bad. But, after the exam he ordered EMG, blood work and a sleep study to see fasics.
The bad news is......the whole visit was very strange. BEFORE he examined me he asked me what I was worried about. When I told him about the weakness, muscle twitching, muscle cramping, he stopped me in mid sentence and said, "I know your symptoms, now what are you worried about?" This went on twice until one of my family members stopped him, since it seemed a little weird, awkward and I didn't know what he was looking for. She asked him if I had an MND. He said, "common things are common. Rare things are rare." He jumped up, grabbed his mid section and said, "I used to be 25 pounds lighter. I have to live with this now. You don't see me obsessing over it." This was all BEFORE he examined me! I was kind of in a daze watching this man. Then he said, "you're a single mom of 3, go to school, does that cause you a lot of stress?" Oh my God! Yea it causes stress, so does the muscle twitching, weakness and cramping I told him.
He said he couldn't see any muscle twitching, so was I sure I was having it. Then he said maybe I have chronic fatigue syndrome where a virus or infection has done something.
Even though it was strange and I was disillusioned with the appt., at least he ordered the tests. He just didn't hear much of anything I said.
Please wish me the best with the EMG and hope they come up with something! If any of you have suggestions for my next appt. with him, I would really, really appreciate it. He told me he has an anxiety disorder and takes meds for it, so I am thinking that may have been why he was so hyper, jokester and not hearing me talk. He didn't reply when I told him I couldn't button a shirt. It was just weird! Thanks for any help. Leslie
Jamiet
02-23-2007, 11:52 AM
typical neuro....I've been to 5 of them, beating around the bush....an ALS center shouldn't do that to you, is he in an MDA ALS center??
If i were you, i would formulate my own opinions...and start being your own doctor.
If you cannot button your shirt, you need to be at an ALS center....sorry to be so honest with you, but that is alarming.
Rgds,
Jamie
Hi Jamie,
I remember from some of your posts that you too are having a hard time. I was not seen in the ALS clinic, though there is one related to the neurology center I was seen at. I needed to be seen by the regular neurologist before being sent to the als clinic. Like I said, at least he is doing an EMG. That's all I need to get started, I think. I have written him a very nice letter, but I will sit on it for a little while. I get the feeling that they are only interested in profound cases in any specialty. I just hope they figure something out before it is profound.
I find many of my symptoms alarming. This last week my jaw has begun to feel weak, as if I have been eating something extremely tough and it is tired out. That went in the neuro's ear and out the other! Maybe these things just don't matter to him. I think he had the whatever it is, it is mentality. Diagnosis does matter because I can't prepare, get any help, meds for symptoms without it. Maybe it will work out, we'll see. Leslie
Wow, Leslie. That neuro sounds like a real odd duck. I don't think having an anxiety disorder is enough to explain such behavior. Why would he even be telling you about his own medical concerns during an appointment that is supposed to be about you? I wonder how he'd react if someone treated one of his family like that.
Anyway, you're right that at least you have the right tests scheduled. Since the diagnosis phase can take time and repeated neurological testing, you may want to ask to be switched to a different doc at that practice. If you're not comfortable with the guy you saw (and why would you be?) don't put up with him. Even if you don't mind his strange behavior, you really need to be seeing someone who will listen to you.
Just my opinion,
Liz
Jamiet
02-23-2007, 12:48 PM
Been down the same road...i've got an appt. monday withe the ALS specalist i've been seeing. Once she sees my tongue again, i'm almost positive she will not be 100% sure it's not ALS now...
You can start the ALS vitamin regimen (antioxidants). I did and the first day into them, i feel better.....i guess it's the B 12.
Anyway....
Vitamin C - 3000 mg per day
Vitamin E - 2000 IU per day
Vitamin B 12 - 3000 mg per day (sublingual)
Co CQ 10 - 300 mg per day
Beta Carotine - two per day (50000 IU)
B complex if you want...
Split taking them up into at least 3 doses...i divided them all into two or three doses.
Good Luck and be persistent with the Neuros. I would not sit back and wait on them. I'm like you, if i got ALS, i want to know now.
Rgds,
Jamie
Just off the top of my head here I'd say the guy sounds like a bit of a whacko BUT some of what he said about the CFS and viral problems could be true. Symptoms of these disorders can look like ALS and are confusing even to a trained Neurologist. If he's right we'll all be so happy for you. You're not keeping that positive attitude are you? Think Chronic Fatigue. It's curable. Think positive. Have a good weekend with the kids. You may not be as sick as you think. I'd be thinking he gave me hope not that he's nuts. At least wait for the tests and then call him a nutbar.
AL.
CBowman
02-23-2007, 01:10 PM
Leslie,
Can you get another doctor, this guy seems like a real ass. You can get you EMG and blood work (have them make you copies) and see someone else. Is there anyway you can go to an ALS center or Mayo Clinic. You have real problems and need answers. I know diagnosing these rare diseases takes time, but you don't need the funny business.
Thats my 2 cents
Chad
I know you are right Al. And the one thing that I did bring home with me is my good reflexes. That means a lot, right? He didn't say anything after he checked my muscle weakness, but I was able to perform the tests that he did (he had me lift my arms in the air 20 times and then hold my arms out straight and push his hands toward the ceiling). Though my muscles felt fatigued and cramped after doing the maneuvers, I could still do them. Thanks so much for your positive and caring outlook!
I can think chronic fatigue, something viral that went haywire. I put a call into that rheumo. I saw to discuss this with her.
I will keep the positive attitude, and I went away happy because he ordered the tests. So, even if he has eaten too much fruitcake, the tests can't lie! Thanks al......Leslie
Jamie,
I really appreciate the regimen. That can't hurt, so I will definitely do it. How do you split it up, breakfast, lunch, dinner type thing? Thanks again.......Leslie
MagnusD
02-25-2007, 09:16 PM
What are your reflexes supposed to be like? When my GP did mine she told me it seemed like I didnt have any....
Just curious what they are looking for when doing the tapping
shannonme
02-25-2007, 11:20 PM
What are your reflexes supposed to be like? When my GP did mine she told me it seemed like I didnt have any....
Just curious what they are looking for when doing the tapping
People with ALS have exagerated reflexes. When the doc taps my mom's knees she pratically kicks herself in the head.
When the PCP checked my reflexes last month I almost kicked into the next room, but when I went to the neuro last week they seemed normal. Last year the neuro nurse practitioner couldn't get a reflex on the right. Very weird. Has anyone heard of them changing?
CindyM
02-26-2007, 09:35 AM
Sometimes my leg doens't move when they tap me with that little hammer and other times I jump a mile.
patricia1
02-26-2007, 10:52 AM
sounds like its time to look for a new neuro However most of them are wacky Ive been to 7 and there was one normal one and he didnt know what I had go figure Pat:smile:
hopingforthebest
02-26-2007, 01:23 PM
Dear Leslie
I work for a very professional neurosurgeon and this neurologist that you saw, by what you have told us in your post, is not very professional.
If this doctor ordered tests that you are going through with, make sure you request a copy so to have your own records for the next specialist that you see. It is your right to have the copies and this way a repeat test can be a comparison test to your next EMG.
Use your gut feelings when seeing an MD and remember there are alot out there willing to help you and give you the respect you deserve.
Will pray right now for you to have the wisdom to know what to do!
Patty :)
Thanks so much for your advise Patty. I have already considered changing the neuro, before I waste too much time with him. Not only was he weird, but he made me feel silly for having the symptoms I am having, so I came home with the same symptoms, unable to sleep well, cramps, etc. I was really hoping for something to relieve some of this. The only problem I am facing with switchin is that I have to travel 2 hours in one direction or the other to see a neuro. I not only chose this neuro because it is a teaching facility, but because it was close to a relative. I am considering, though going 2 hours in the opposite direction for better ins. coverage and a different doc. I would like to find a neuro and stick with him. After working in the hospital for 15 years I know it isn't good to switch doctors a lot, but what are people supposed to do when they aren't comfortable with their care. He can't misread an EMG, right?
Hi Leslie -
Unlike a lot of you, I've been very fortunate with the doctors that I've seen through all of this. They've been respectful, truthful, hopeful, and compassionate. I think this has made a big difference as to how I've handled my whole situation.
From your last post, it sounds like you don't have a lot of confidence in the doctor that you saw. If you're going to make a switch, switching early seems to make the most sense to me. I just wish you didn't have to travel so far for care.
I wish you the best of luck, no matter what you decide to do.
Liz
Jamiet
02-26-2007, 07:50 PM
Leslie,
Find you a neuro that is at a sponsored MDA ALS facility. Go to the MDA's website and you can look for a facility. There should be one w/in a few hours of you. I drive 4 hours to visit my neuro in HOuston.
Went there today, and regarding reflexes....I did kick her..literally....it hurt her....Of course, she stated you are VERY brisk....
And again, she had no answers for me. She is still saying no als, but, her confidence seemed shaken this time.... Told me to come back in June...that's 5 months...
She was straight forward with me and told me, you'll either be better or worse... If your worse, it's bad, if your not, it's good....
Normal Reflexes are a good thing.
Best of Luck Leslie...
patricia1
02-26-2007, 08:14 PM
Its important not only who reads your emg but who does it as well so yes I would make sure before I let him do it or read it because it is not a pleasant test
I'm sorry your reflexes were brisk Jamie. I know that can give you a pit in your stomach. Hopefully things will get better and when you are ready to go back your reflexes will have calmed down. I am sure 5 months seems very long to you, it does to me, but try to put your mind on moving on, think positive. My reflexes changed, maybe yours will too. Leslie
niceguy
02-26-2007, 08:49 PM
Hi Jamiet,
I agree with Leslie on the reflexes and trying to relax over the next 5 months. My reflexes / jumpiness were much higher before certain tests like my EMG came back clean. Which I'd attribute to my anxiety and hightened attention to the reflex test. I know that somethings wrong with me but at least there was some positive news. Did you have other normal pathalogical signs? How about the Babinski(?) test?
Since then, I've basically been more accepting of the fact that something has changed and it's affecting my life. At this point in time I don't know if it will continue to progress or if this is as bad as things will be.
The way I keep looking at things is; I've been fortunate in a lot of ways, and I'll continue to do the best that I can. I've actually loosened up a bit more around people and I've gone out and purchased a few things I probably wouldn't have if my symptoms had never occured. At this point in time I'm enjoying things more than I did before, so that's a big plus.
hopingforthebest
02-26-2007, 09:31 PM
Leslie
That's a good question? Not sure about that. Ask the experts here.
Praying for you!
Patty
MagnusD
02-27-2007, 01:30 PM
Why are weakend reflexes a symptom of ALS?
I don't think they are. From what I have read they are brisk or hyperreflexic in als.
Leslie -
You are right. It is brisk reflexes that are a sign of ALS, at least early on.
Liz
MagnusD
02-27-2007, 04:05 PM
Upper motor neuron
Spasticity
Hyperreflexia
Pathologic reflexes (eg, Babinski's sign)
Lower motor neuron
Muscle weakness
Muscle atrophy
Fasciculations
Hyporeflexia This is Weakend or absent reflexes....
Hypotonicity, flaccidity
Muscle cramps
Bulbar
Dysarthria
Dysphagia
Sialorrhea
Pseudobulbar palsy
Respiratory
Exertional dyspnea
Respiratory failure
Other
Fatigue
Insomnia
Weight loss
Tendon shortening
Joint contracture
ALS, amyotrophic lateral sclerosis.
--------------------------------------------------------------------------------
Adapted, with permission, from Mitsumoto (1).
Is this a late sign or what?
Ive been scheduled for an EMG and NCV in May for having the spasms/cramps/fatigue and weak reflexes
My strength was not that bad. However I am showing some signs of atrophy; when I look at myself now and compare to 7 months ago. My body pops/crackles when I move, and if I walk for awhile the next day it feels as though I ran on a treadmill for an hour type soreness
I also am always tense and flexing muscles unvoluntary, but I notice them at times and can relax them back to normal not sure if this is Spasticity...
Im just worried and scared
We have some of the same symptoms. I, too, feel as if I ran a marathon the next day after walking. Simple things make my muscles feel as if I worked out strenuously. For instance, today the physical therapist checked my muscle strength, which he said was good. Now I am having much more twitching, cramping and feel as if I worked out. And all I did was push back against his arm! I also have noticed that my "bones" crack when moving. I am not sure it is bones, like you said pop and cracking. Also, like I said earlier my reflexes have gone from one thing to the other and the docs were never upset about them. I would rather think it doesn't mean anything than to think I have only seem dumb docs! I'm trying to convince myself of the former!
It is very good news that your strength is good. Did the doc say you had atrophy or did you notice it yourself? Because I noticed my muscles wasting, but the physical therapist said he didn't see "too much wasting". That's way more than any doc has told me.
I know May seems a century away, but maybe things will get better by then. We have some similar symptoms and there are people on this forum who are sure I don't have an MND and the neuro didn't seem alarmed. I hope you the best. Leslie
MagnusD
02-27-2007, 05:42 PM
My muscles are real defined now, ex. splits in my calves where I never had them 6 months ago. My muscles are smaller than they used to be. The worm like spasms and cramps just make my day go bad from waking till I go to bed.
niceguy
02-28-2007, 12:43 PM
Adapted, with permission, from Mitsumoto (1).
Is this a late sign or what?
Ive been scheduled for an EMG and NCV in May for having the spasms/cramps/fatigue and weak reflexes
My strength was not that bad. However I am showing some signs of atrophy; when I look at myself now and compare to 7 months ago. My body pops/crackles when I move, and if I walk for awhile the next day it feels as though I ran on a treadmill for an hour type soreness
I also am always tense and flexing muscles unvoluntary, but I notice them at times and can relax them back to normal not sure if this is Spasticity...
Im just worried and scared
I have similiar muscle and joint issues. I noticed an increase in joint problems with my wrists, fingers, neck, knees, and my ankles (minor but they've all started to occur within the last 6 months). If I get up out of my chair and push down with my left arm I get a loud crack...
My muscles... they quiver at times when under light loads (but I have good strength). I find them tensed exactly as you've described and I can relax them immediately upon notice. This is very different compared to the "spastic" feelings in my hamstrings. It's hard to explain but there's a clear difference because the tight muscles aren't cramped and I can relax them. When the spasticity occurs in the legs, I'm stuck with it until they relax on their own (it's a more uncomfortable feeling in the legs and the muscles aren't very tightly contracted).
Fortunately / unfortunately for me, I've experienced other symptoms that point to metabolic disorders. The'yre incurable as well and they tend to progress more slowly (than a MND) but they also affect more areas of the body. The muscles first affected (notably) are my shoulders and hips. Now my neck and back fatigue faster as well and I've also had tendon pain (achillies). About 2 - 3 years ago I started to work out (after stoping in highschool). Everything seemed fine throughout the day after the workout but when I woke up... The tendons between my biceps and forearm hurt more than any muscle injury I'd had in the past. So, I'm not sure if something's been wrong for the last few years but it wasn't noticeable enough to see a doctor.
One symptom that I have which is clear to me throughout the day is taking a drink. If the water bottle is about 1 - 2 feet away my arm feels akward reaching out for it. Once I get it, the last few inches before I can drink become akward and shaky. Sometimes my head will even make a funny move while I'm focusing on getting the drink in my mouth and not on my face. A lot of the time it feels like my hand wants to move quickly and throw the drink in my face...
Hi Jamie,
I wanted to thank you for suggesting the vitamin regimen with the dosages. It has been about 3 weeks since I started it and my twitching has lessened. In fact, as compared to when I wrote that post I feel a lot better. I still have neurological symptoms and am not the person I was 16 months ago, but I definitely feel better than I did. It makes me wonder if I was deficient in one of them. Anyway, I am so thankful for that info because of how much it has helped me. Leslie
