Thank you for the opportunity to post..

sadida

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I just wanted to post here, as I am currently waiting for my Neurologist appointment in May.

I did read the stickies, so I am not looking for a diagnosis, rathe, I guess it is just an opportunity to vent about my symptoms.

I am a 38 year old caucasian female, previously diagnosed with:
Major Depressive Disorder
Generalized anxiety
Fibromyalgia
Diverticulitis
Born with flat feet

Now I am used to living in pain. I have attributed any pain with my fibromyalgia. Any unsteadyness I always blamed my flat feet.

I am an artist, and I love to draw. About 1 1/2 months ago, while drawing, I was having trouble gripping my pencil. I qm right hand dominant, and whenever I would go to pick up my pencil and draw, my hand would start to shake like crazy. I just gave up and was afraid to draw.
Before thatm as early as December 2020, I also noticed my right foot would shake if I put it in a certain position.
I have been having trouble sleeping latelym and have had EXTREME daytime fatigue.
About 1 month ago, I woke up with both of my hamstri gs in a SEVERE cramp. I had trouble walking. I was also experiencing some sciatica as well. This is what prompted me to visit my PCP.

PCP exam showed that my legs could not be lifted past 30 degrees when maying down. My back and leg muscles were severely cramped, so Dr blamed this all on the fact that I had a 2 year old son. I am a stay at home mom. He instructed me to take some muscle relaxers and prednisone for inflamation. He also instructed me to go to physical therapy.

While I was waiting on my physical therapy appointment, I decided to visit a chiropractor and do xrays. Xrays showed that my neck is straoght, not curved, upper back is hunched over, my lower back is starting to get a slight curve (like scoliosis) and my hip is misaligned about 18 degrees. Structurally, my spine looks OK and no indication of inflammation of my SI joints.
Chiro did notice one thing... he asked me what my PCP said about my shaking? I told him I have didnt get a chance to mention the shaking to my dr, so I made a follow up appointment.

Dr saw me, and was dissappointed I had not yet seen my physical therapist. I told him the prednisone and muscle relaxers did not help. Showed him my x rays, he said it is likely my muscles are so tense that it is affecting my posture. I do not have any shooting pains so he jas ruled out anything structurally in my spine (i.e. pinched nerve, slipped disc, ect.) Before he could dismiss me, I held out my hand and clenched it, and said, how about this shakiness? He stopped in his tracts, and did a further evaluation. Both my right hand and left hand was showing signs of an intention tremor, so he put in a referral for a brain MRI. I am also experiencing double vision and blirriness in my right eye (but I have been told I have astigmatism) Said he suspected MS. He also put in a referral for a neurologist and a neuro ophthalmologist.

Ok. I just want answers at this point. Earliest Neuro appt is in May and Neuro Ophthalmologist is in late April.

I go to my PT eval, and I have a positive Hoffman Sign. Hyperflexia. I can not balance myself with my eyes closed. Noticible weakness in my right side extremities. They told me that I am showing signs of both upper and lower neuron lesions. Confirmed I needed to see a neurologist as soon as possible.

My insurance has denied my MRI for Movement Disorders.

I followed up with my PCP and he is going to have his office try to call arou d wothin a 100 mile radius to find me another neuro who can see me earlier. He os also working on fighting the MRI denial. I plan on contacting my insurance as well once I get my PT records released to me.

My concern is, its like I am getti g WEAKER on my right side as I am doing physical therapy. My intention tremors seem to be from when certain muscles are in use. My right knee is starting to spasm as well when I stand up. When I drive, I can put my right hand up at the top of the wheel, and my wrist will just SHAKE. My right foot will shake whenever I go to lift my foot up on the gas or break pedal. I also have a weird spasm or tremor in the right side of my neck/face if I open my mouth a certain way (my lower right lip will spasm downward, and a muscle on the right side front of my of my neck will tense up)
I have odd muscle twitches all the time. Sometimes it will be in my left glute, my right leg, my left leg, my back, it is just all sporadic. No rhyme or reason when the twitches start.

I am sure I am missing a few other things here, bit I just wanted to type this all out. It is very therapeutic. :)

I know I am not crazy. At this point though, it is tough to say if I have MS, ALS, or something like an atypical parkinsons thing going on.

Anyway, thank you for allowing me to post. :) This is nice, as I am just playing the insurance denial game and waiting game.

Correction... both my right hand and my RIGHT FOOT are showing signs of intention tremor. My LEFT HAND is fine. Not sure why I typed that! I am sorry about that.
 

affected

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Sorry for all you are going through.
Doesn't really sound like ALS - the shaking or tremors really points away and is totally different from clinical weakness which doesn't seem to have been found..
Regardless, you have vented now, and you have an appointment which is great.
Come back after you have seen a neurologist and let us know what they say.
Remember this site is for people with a terminal illness, so we are interested to know the outcome, but can't do anything in between. That was a very long post, so I hope it helped you. Others waiting on a diagnosis can't interact with you on this, so try to live the best until your appointment. Most of us here had to wait weeks and weeks for each appointment in the diagnosis stage so that's all quite normal. You won't get these weeks back regardless of the diagnosis, so try to make the most of them and let the doctors do their job.
 

lgelb

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I agree, ALS is not in this picture, but glad you're in a diagnostic process.

Best,
Laurie
 

TippiLeigh

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Hopefully you can start getting approved for testing, like MRI’s. Those are usually the first thing they seem to do to try and rule out things like MS, as you’ve mentioned. For now, they believe I have PLS (Primary Lateral Sclerosis), which means I have mostly just upper motor neuron symptoms. They won’t rule out ALS until they can see that I don’t develop any lower motor neuron symptoms in the next year or so. I had terrible tremors due to spasticity before being put on Baclofen. I also had a positive Hoffmans sign & hyperflexia. My weakness started on my left side only but has now started traveling to my right side. My course went through my primary physician first...MRI’s, CT’s, countless blood tests, etc. When all that was ruled out I was sent to a neurologist (Now I’m seeing three, so that should tell you what a long process this is LOL)

I’m sorry you’re having such a tough time with your insurance. I also know what that’s like and it’s extremely frustrating. There are many other conditions that can cause these symptoms, in addition to motor neuron disease. Just keep working with your doctor so they can hopefully get to the bottom of what’s going on with you. Please come back after your next doctor’s appointment to update any new info. Take care and hope you feel better soon!
 

sadida

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Thank you all for the great responses.
I am doing my very best to keep positive, and to enjoy every day :) I know diagnosis can take time. It is just nice to talk to people who will listen, and not brush me off.

I want to clarify the tremors. I have done a great amount of research, trying to find a video that shows the tremors, but I really do not believe they are tremors per say, it is more akin to Clonus.

Since I posted the first time, my PT and Chiropractor have noticed that I am progressively getting weaker on my right side. (I am also right side dominant :( )

Anyway, I do understand that ALS is a very severe condition, and my heart truly goes out to all who have been diagnosed, and those who have symptoms.

I will keep this thread updated as I learn more. Take care, everyone.
 
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