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Henny Penny

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I am new to this forum- I am in the process of a 9 month rule out other diseases. Symptoms initially started out as balance issues and weakness on the left side-leg and arm/hand- had 2 falls. I have torn both knees that have required surgery to repair over this past year. What's been ruled out- stroke, MS, lyme disease, all tick born diseases, heavy metal poisioning. Discovered have a B12 def. which I have corrected with injections, symptoms worsening. Also MRI of cervical showed bulging disc at 3-5-7 no compression- (7/11 repeated 1/12 No change- compression-they ? cervical myelopathy- hard collar made faciculations increase. Have a positive babinski to left foot, and starting with foot drop. My fatigue is debilitating so tired trying to get around. Have a follow up with neuro this week. My PCP is going to call ahead and request EMG- haven't had emg or nerve conduction test. Have had a total of 6 MRI of head- so have been assured no stroke no MS which is good- Any other tests?:confused:
 

momap53

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I suffered from overwhelming fatigue and found I had the B12 deficiency too and was treated for that. I had MRI of brain, cervical, thoracic, and lumbar spine. Several blood tests as well as 24 hour urine for heavy metals. Lumbar Puncture, muscle biopsy of the thigh were on my list and of course the EMG and NCV 3 times by 3 different Neuros. All dirty.
I hope you have some sort of AFO or other device for the foot drop to help keep your falls to a minimum while this is sorted out. Don't hesitate to try one of the rolling seated walkers. I found it quite helpful in getting around and it was nice to have a spot to sit when I got tired. Learn to use the brakes!
Good luck, I hope they find something else.
 

Henny Penny

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Thank You- I think what is frustrating me is that I am a nurse- have been for 28 yrs. I am the care giver- nothing has ever kept me down- I worked through 2 pregnancies-was counting contractions for both- got off duty and went to the labor room- worked for a full week with a fractured ankle before seeking medical attention- I think my PCP of 22yrs/ who I have also worked along side of for just as long is having a hard time with thinking of a MND diagnosis- when he called on friday to tell me cervical MRi showed no change he was so apologetic- I know sick that we were hoping for further disc bulging and cord compression. I thought for sure with my progressive symptoms it was going to show cord compression and I would be buying myself a trip to the OR for cord decompression surgery.
 

HelenL

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Henny Penny, where are you getting all your testing done? I'd recommend going to a neuro who's an ALS specialist. It certainly sounds like you've ruled nearly everything out, but you won't really know until you get a "dirty" EMG.

Welcome to our forum, and I hope you find a different diagnosis, and you can get on a different bus!
 

hjlindley

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One day at a time! I had hand weakness starting 4 years ago (trouble opening water bottles, etc) Progressed and eventually a dirty EMG. Remember, starts slow, stays slow. And this stuff is just here, it is not who I am or what I can or cannot do. I agree that medical knowledge is a double edged sword. Let's hope they find something treatable. We may be soon, too!
 

notme

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Hi

Brain MRI alone can't rule out MS. They found cervical abnormalities, but have they done a lumbar MRI? Is this the same foot that you broke? Is it possible it didn't heal properly? I'm a little surprised an EMG wasn't ordered long ago.

It was the first thing ordered for me when my MRI ruled out my neck as the cause of arm weakness and loss of function.

Hopefully, you'll get some answers, and the diagnosis will be treatable problem.
 

Henny Penny

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Well the EMG was next back in July- but when they found the b12 def. it was "ahhha" look no further- then I injured my knee when my legs buckled when I stood up from a meeting at work- so had surgery early sept. they were waiting to let me heal, and see if the B12 injections made a difference. I also have been in a little denial about my symptoms- returned to work 4 days after surgery (was suppose to be out 2 weeks) using no device because if I keep going I am alright - Instead my symptoms have progressed since July. HelenL so far all my testing has been done locally in Fall River- I did see 2 nedurologist last summer in Boston at Beth Israel- the first was when they thought I was having hemiplegia migraines- who then refered me to her associate she ? possible seizure disorder- that was ruled out- so were going to pass me off to yet another neuro specialist when the B12 def was noted. If my EMG is "dirty" I am thinking I should head to Mass General.
 

Henny Penny

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Hi had a very frustrating 2nd visit with my current neuro- saw him one month ago for the first time on the recommendation of my PCP who had evaluated my progressive symptoms and referred me. My current neuro had placed me in a hard cervical traction collar after our first appointment in Dec. for possible cervical myeolopathy- despite MRI showing no cord compression. I was willing to try anything that would alleviate my symptoms and improve my balance. After 8 days I was worse- and everyone around me- family and co-workers including the Docs I work with saw a drastic change in my symptoms and abilities- this neuro was on vacation over the holidays - so called my pcp who had me stop the collar and put me on short course of steroids for ? inflammation- and repeated the cervical MRI which showed no changes since july MRI- cord continues to be clean- PCP called the neuro- and asked for the EMG- WELL the neuro was very upset that the collar was stopped after 8 days- he said that my neuro eval had declined from a month ago- more hyperreflexic, still have babinski, balance worse etc- would not do an EMG- said he really doesn't hold a lot of stock in them- bases his diagnosis on clinical finding- which I can respect because we as a society do rely on technology to much- but wants me to "HUMOR HIM for 2 weeks and wear the collar" He gave me a script for baclofen for the spasticity and sent me on my way with a caution of " If your symptoms decline further over the next 2weeks call me immediatly and I will be the first to fly you up to Mass General" I am frustrated, tired, scared- don't know how I can work taking baclofen- took a dose last night so I could hopefully get a few hours of rest- had a hangover effect feeling all day-wore the collar- so my balance was awful- can't see where my feet are going with the collar on so I am petrified of falling- My clinical nursing skills are setting off all kinds of internal alarms that something is not right but don't want to come off as a "hysterical nurse" Just don't know what to do next.
 

HelenL

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Henny Penny, go to Beth Israel or Mass General. Tell your primary care that you need a referral and get you in there asap.
 

momap53

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Trust your gut and do whatever you need to do!
 

notme

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With those kinds of symptoms it's just silly of them to have not done an EMG. But, you're not helping yourself by not doing what you are supposed to do, either.

Going to work 4 days post-op was just silly. As a nurse, you know that not following clear directions of your doc is silly...then again, a doc that insists on a collar for someone with leg issues and a clear MRI doesn't seem too on the ball to me, either.

I'd see a neuromuscular specialist and go from there. With obvious UMN issues on exam, they need to get it sorted out.

I'm rather surprised the place you work allowed you to come back 4 days after surgery. If you were to reinsure the leg from this, they wouldn't want the potential liability I wouldn't think.

Good luck to you.
 

olly

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hi henny.
with your symptoms/signs it could be pls but unfortunatly it could be a long time yet of watching your progression to determine this.
baclofen can take several weeks to get into your system before you start to feel a difference.
what dosage are you on? it should be increased slowly to a maintance dose of 60mg which can be decreased/increased depending on how well it works.
it can make you fatigued but if you stick with it this should lesson over time.
i have been on baclofen coming upto 12yrs now ,was on 60-80 mg but decreased over the years to 40mg as i have more weakness than spasticity now.
 

HelenL

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I loved my neuro at Beth Israel, only reason I switched to UMass was the ALS clinic was easier and a lot closer.... he won an award in Boston mag for an invention as well... PM me, and I'll give you his name and the name of the neuros I see at Mass General. One of them I see through the Dex trial, the other I see at the UMass Clinic, so far I like them both.
 

Henny Penny

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Got a call from my PCP yesterday wanting to see me in his office later that day. I believe he got the report from the neuro he sent me to and wasn't happy that he didn't do the EMG- my pcp wanted to examine me- and found that my clinical presentation had declined since he saw me a month ago- more hyperreflexic, and he said my babinski sign was more prominent and brisk. He feels that my trouble lies in my cervical area despite the 2nd MRI shows no cord disturbance, and no changes in the 3 discs that are slightly bulging. He wants me to see neurosurgeon now- said he would call the neuro so as not to step on anyones toes and call me later- with a name of who I should see- I told him I am all done with the local specialist- he never called me so I took matters into my own hands- I gave him until 10 am to call me- I called Mass General Hospital Neurology department- they requested that I have my recent notes and MRI reports faxed up to them from PCP and they will review and call me with an appointment to see who they feel will be appropriate- All my symptoms are UMN- if it is cervical then fix it already before I lose any more of my ability- hard cervical collar is just making me more spastic- I see how people especially visitors look at me when I walk through my nursing units doing rounds- I just wnat to wear a sign-"NO IAM NOT DRUNK" and "NO I WASN"T IN A CAR ACCIDENT" I had an unfortunate accident this past weekend- my husband keeps an epi-pen because he has had several episodes of sudden lip swelling that has required hospitalization and IV steroids- each episode had gotten progressively worst so we keep an epi pen in case it ever causes throat swelling- well it had expired so I went to open it to squirt out the med in the trash- I have opened hundreds of synringed meds in my career as a nurse- well I was having difficulty popping off the plastic ends and accidently stuck my thumb with the whole dose of epinephrine! Not a good thing to do! I am ok but it was a real smack of reality that my hands are becoming more affected. Hopefully will hear from Mass General tomorrow with appointment
 

notme

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I hope you get some answers. I'd certainly want to see a neuromuscular specialist. Take care of yourself! Bet that epi sent your heart into hyperdrive! Keep us posted. Remember, it's only ALS when it can't be anything else. Lord, even when cervical issues are suspected, an EMG and NCV should be done.
 
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