Good Morning.....newbie, don't know what's happening to me

[karbry1]

I think I'm at a point in my life now that I'm scared about what is happening to me. About 1 1/2 years ago I started losing my balance and had problems with my eyes. I started going to a neuro who's initial thoughts were MS. 8 MRIs and a spinal tap later no answers. He then thought I had a peripheral neuropathy. An EMG did not show any sensory nerve damage. I decided to find a new neuro. My problems had progressed into me not being able to walk right. I walk very stiffly and have tingling sensations everywhere. I have cramps mostly in my legs and hands. I found a new neuro who performed an EMG on me and test showed myopathy. He suggested that I go to John Hopkins for a muscle biopsy. After thinking I had MS, then a peripheral neuropathy, to something was wrong with my muscles, now I'm worried. Last night I could not eat dinner because my jaws were so sore....this morning I woke up and my eyes were pounding....I slept from 9 pm till 1 pm today. I'm just drained. Has anyone experienced this? I'm a mom of 5 and work full-time......the kids are older so they help out.....and so does my husband. Please give me any suggestions that you can. Thanks.

 

[olly]

hi karbry1

firstly you did not mention if the emg showed any possible lmn signs,or if you have any atrophy or fasic,s.
it can take along time of eliminating many things to get a definate diagnosed.
like you i was tested with mri,s for 7yrs for ms then multi system atrophy but all were clear.
the leg stiffness and awkward gait caught my attention,this is a classic umn symptom.
do you have hyper reflexes and/or clonus plus balance problems?
if so when you go for your appointment ask about pls.
i too have the jaw stiffness and aching from jaw spasms.
i am sorry you are going through this,you are in the right place for help and support
take good care.
caroline:-D

 

[karbry1]

The Emg showed myopathy. I didn't ask the neuro who performed the test any questions about it. He just suggested that I go to John Hopkins for muscle punch? I do have hyper reflexes, two neuros have commented on that. I have small tremors and muscle jerks, however, I have had full limb/body jerks only when I rest. Balance is a joke to me....I think I need to get a letter from the doctor's incase I'm ever pulled over and asked to perform heal toe...I would fail miserably. I can not close my eyes and stand with my feet together. Also, I can't move 4 toes on my left foot...big toe still moves a little. This morning legs felt very weak...felt like they were as strong as tooth picks. I've been keeping a diary for my doc as I forget a lot of things that happen over 2-3 months between appointments.

 

[olly]

hi

i too fail badly in the heel to toe test and standing with the eyes shut.
i am all over the place somedays and if my speech is off i do look and sound drunk,i would not mind but i am teetotal lol.
we have alot of symptoms in common like the myoclonic jerks.
as for the myopathy showing on your emg i am not sure what that means.
wright would be able to answer any questions about that.
take good care.
caroline:-D

 

[karbry1]

Olly, you mentioned speech...is that a constant? or does it get better then gets worse? I was admitted about a month ago to the hospital...my speech went slurred kind of..like talking like Elmer Fudd from Bugs Bunny......they wanted to rule out a stroke. CAT and MRIs came back fine. My speech improved over a weeks time. Just curious about your speech.

 

[olly]

hi

since i got ill my speech goes a bit slurred if i am over tired or fatigued.
i started with symptoms in my legs first but 2yrs ago started with bulbar symptoms.
my main problem is jaw spasms and stiffness,this started at the begining of the year.
i find now i have problems with articulation,sometimes i can not get words out right.
i can start to say something and it takes a few attempts to get the words out right,i suppose a bit like a stutter.
i think this is due to the jaw spasms,stiffness and clonus.
i have problems eating with my jaw/chewing muscles but in general it does not behave the way it should,it has a tendency to suddenly go stiff and snap shut.
though i did have some possible spacticity in my tongue a few months back.
hope this helps.
take good care.
caroline:-D

 

[crystalkk]

karbry,

Myopathy points towards a muscle disease not the nerves affecting the muscles as in ALS.
Do you have a copy of the emg report that you can post, someone might be able to help you more.
The reason your nuero is suggesting a biopsy is it might help more to determine what kind of myopathy.

hang in there,

 

[karbry1]

thanks for messages

I'm thinking I may have Myasthenia Gravis.....I'm going to inquire about that at my next appointment. My initial symptoms started with my eyes and balanced then moved into my legs within a few months. I'm actually hoping this is what it is given the other options. Regarding the EMG, my neuro actually performed the EMG on me, and told me I had measurable myopathy, which was a new term to me.....so I didn't ask anymore questions. He suggested the muscle punch at John Hopkins. Instead of driving 5 hours to Maryland, I was hoping they could test locally for the MG.

 

[olly]

hi again

i dont think you would have hypereflexia or myoclonic jerks in mg as these are umn symptoms.
in mg i think the reflexes are normal,there is a related condition were the reflexes are diminished.
hopefully your muscle biopsy will give more answers.
i hope it goes well.
take good care.
caroline:-D

 

[karbry1]

olly....

I'm glad you said that......because those were the symptoms that I have that I don't find related to MG....which is why I'm a little worried. I guess I have a right to be. I've found discussions on these forums where people were taking their dogs for "brisk" walks then had leg cramps.......God I only wish I were able to take my dogs for a walk. 2 mph is the max for me....without falling over. It's so sad because I am a US Veteran that was at one time training for mini triathalons. Now I can't even carry a load of laundry down the stairs because I'm not strong enough to lift the laundry basket. Is there any relations with low cholesterol and low b-12 levels with these problems? my combined cholesteral is 120 and b12 is 200 (a little low)....they checked me for the pernicious anemia...they didn't buy that as the cause.

 

[lydia]

I also have leg stiffness and very sore muscles (among other things). My B12 is 311 and my neuro has me taking supplements and to check back in two months. A friend who recently started seeing a neuro for problems like tingling in hands/feet and loss of fine motor control was also put on supplements for B12 around 350. I think they do it to be on the safe side. 200 seems really on the low end. Seems like there has been a few news stories lately about the effect of low normal B12 on the brain. Can't hurt to try some?

I hope you get some answers soon-

Lydia

(oh shoot, there are different units for B12 levels. Can't remember what they are, I think Robert posted a comment about that on other thread, but still, 200 would be lowish regardless of the units used; I think...)