undiagnosed movement disorder

Posted by beth11 @beth11, Dec 25, 2019

I am new to this discussion forum. I have been seeking a diagnosis for over a year and a half and am open to any and all suggestions. I was hospitalized in 2018 and misdiagnosed with a seizure disorder. After year of failing to improve or confirm seizures via eeg and video eeg I was referred to a movement neurologist. I have abnormal muscle movements which impact my entire body, muscle spasticity in both feet which has become constant, and myoclonus mostly at rest. My toes are completely curled in and cross over each other. All tests have come back normal including brain MRI/CT, EMG, and upper spinal MRI. I am scheduled for a lumbar MRI which if it comes back normal my neurologist has suggested I seek treatment at either the Cleveland clinic or Mayo clinic. If anyone has similar experiences please share any advice. I am taking baclofen and neurontin without any improvement. I can no longer drive and am not working.

@beverlymarks

I have problems with Spasticity in my legs. I cannot walk without a walker. I have fallen many times. My Dr has me on Hydrocortisone 15 mg 2×a day. I have not heard of . My Dr didn't recommend Iron IV. Is this helping you? I pray that it continues for you. What did they diagnose you with? Stay strong. God Bless.

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Hi Beverly, I have low iron. It's not part of the other symptoms but it does make me tired and more twitchy. I have the hematologist appt to address the ongoing anemia.

Beth

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@beth11

Hi Beverly, I have low iron. It's not part of the other symptoms but it does make me tired and more twitchy. I have the hematologist appt to address the ongoing anemia.

Beth

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Hello @beth11,

Low iron is an interesting piece of information. It can indicate celiac disease. You might discuss this with your hematologist

Here is a link to some info about celiac disease, https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

If you read the article you will see that celiac disease in adults often does not cause digestive problems but other symptoms, up to and including neurological conditions. I'll copy that part of the article here:

"However, more than half the adults with celiac disease have signs and symptoms unrelated to the digestive system, including:

Anemia, usually from iron deficiency
Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
Itchy, blistery skin rash (dermatitis herpetiformis)
Mouth ulcers
Headaches and fatigue
Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
Joint pain
Reduced functioning of the spleen (hyposplenism)"

Liked by Lisa Lucier

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I would love to hear from you after your next iron iv. I should of thought this was a reason I was always tired.My Dr said it was part of my disease.My Dr put me on 50,000 I of Vit D. I would love to hear if the iron you are getting helps.I pray this is the answer for you. Will keep you in my prayers.

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@beverlymarks

I would love to hear from you after your next iron iv. I should of thought this was a reason I was always tired.My Dr said it was part of my disease.My Dr put me on 50,000 I of Vit D. I would love to hear if the iron you are getting helps.I pray this is the answer for you. Will keep you in my prayers.

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Hi @beverlymarks, I believe you meant to address your post to @beth11. I, too, would like to hear more about the IV iron treatments and how they helped or not.

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@sadnancy

Update: Rib area spasms are less severe and less often.

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Do you go to physical or occupational therapy? They may be able to help you increase your tolerance of walking/ standing and offer advice regarding exercises to do at home. Especially as your body adjusts to the new medication. Every little bit of activity helps.

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@hopeful33250

Hello @beth11,

Low iron is an interesting piece of information. It can indicate celiac disease. You might discuss this with your hematologist

Here is a link to some info about celiac disease, https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

If you read the article you will see that celiac disease in adults often does not cause digestive problems but other symptoms, up to and including neurological conditions. I'll copy that part of the article here:

"However, more than half the adults with celiac disease have signs and symptoms unrelated to the digestive system, including:

Anemia, usually from iron deficiency
Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
Itchy, blistery skin rash (dermatitis herpetiformis)
Mouth ulcers
Headaches and fatigue
Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
Joint pain
Reduced functioning of the spleen (hyposplenism)"

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Thanks Teresa. I have heard from others that the specialist that I'm seeing is very thorough. The reason for my appt. is to evaluate why I'm iron deficient so I will keep this information in mind.

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I'm feeling very discouraged today. Waiting to see the next specialist while continuing to suffer is by far the most frustrating aspect of chronic illness. I feel like my entire life and future is on hold. My daughter has a 5th grade band concert in 2 hours and I currently can't get up from my chair. It's these moments when I get very down.

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It's hardest thing not understanding why your going through this difficult time, being in limbo we sometimes say, tis stressful and hard to deal with, not knowing is half the battle somewhat overwhelmed by things around you especially if the doctors can't understand why your body has reacted in some way, this is just stab in the dark , do you or have you had mercury fillings in your teeth ?! I've had similar thing happened to me something makes my body move without my saying or doing when I walk can't stand up or wobbling like I've been drinking when I am almost tea total ( so we say in England) doctors can't understand and because they are not able to understand sometimes they don't want to see you anymore. It's definitely frustrating.i don't know whether you have any other illnesses autoimmune diseases or family members had , but might be worth ask doctor what you think, triggers this off, where /when did this start for you ?! I've found chillies turmeric ginger root dandelion root all helps and especially taking sugar out of my lifestyle changes. Hope this gives you some peace of mind just knowing that your not alone can sometimes help. try to look for things that bring you joy , birds , horses mountain sea view … Keep a journal helps too … Kind regards swift hug from England

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@swift

It's hardest thing not understanding why your going through this difficult time, being in limbo we sometimes say, tis stressful and hard to deal with, not knowing is half the battle somewhat overwhelmed by things around you especially if the doctors can't understand why your body has reacted in some way, this is just stab in the dark , do you or have you had mercury fillings in your teeth ?! I've had similar thing happened to me something makes my body move without my saying or doing when I walk can't stand up or wobbling like I've been drinking when I am almost tea total ( so we say in England) doctors can't understand and because they are not able to understand sometimes they don't want to see you anymore. It's definitely frustrating.i don't know whether you have any other illnesses autoimmune diseases or family members had , but might be worth ask doctor what you think, triggers this off, where /when did this start for you ?! I've found chillies turmeric ginger root dandelion root all helps and especially taking sugar out of my lifestyle changes. Hope this gives you some peace of mind just knowing that your not alone can sometimes help. try to look for things that bring you joy , birds , horses mountain sea view … Keep a journal helps too … Kind regards swift hug from England

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Thank you @swift. I don't have mercury fillings…I've been in limbo for about a year and a half. My symptoms and neurological exams show a neurological problem but the specialists have not been able to determine a cause. Therefore, I continue to go through various tests to rule out causes. Its the way neurological medicine works. I get it, but in the mean time my quality of life continues to suffer. I have recently completed a Masters degree in environmental law & policy. Unfortunately, I feel frozen in my job search as I can barely walk. The fatigue, muscle weakness, and spasticity are so unpredictable. How can I possibly maintain a typical 40 hour a week job when I can't drive, can't stand/walk for normal periods of time? I can't qualify for disability without a diagnosis. I have six months until my students loans begin being charged…it's all a bit depressing and there's no where to go for help. I share this not to be negative but just to share the truth. I'm sure there are countless others in the same situation. My iron infusion was a complete train wreck because of insurance loopholes and policy. From my perspective I just want a diagnosis and treatment. It shouldn't be this hard for anyone.

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The new drug, Austedo, seems to be helping. I call it my miracle pill. The rib area spasms occur briefly just a few times a day and I have less breathing issues. I'm having new symptoms which I'm guessing are side effects of the drug: swollen feet and legs up to my calves, constipation, weight gain. I wonder what the breaking point is – when the side effects are worse than the reason for taking the drug. I suppose the doctor will help make the decision. I'm tapering up more each week. Started at 6 mg twice a day and now I'm up to 12 mg twice a day.

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@sadnancy

The new drug, Austedo, seems to be helping. I call it my miracle pill. The rib area spasms occur briefly just a few times a day and I have less breathing issues. I'm having new symptoms which I'm guessing are side effects of the drug: swollen feet and legs up to my calves, constipation, weight gain. I wonder what the breaking point is – when the side effects are worse than the reason for taking the drug. I suppose the doctor will help make the decision. I'm tapering up more each week. Started at 6 mg twice a day and now I'm up to 12 mg twice a day.

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Have you talked to your dr. about the swelling?

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@beth11

Have you talked to your dr. about the swelling?

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I plan to call doctor on Monday. Thanks for the nudge. I'll let you know what I find out.

Liked by beth11

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Hello. I too am new. I can barely walk or turn around, have fallen quite a few times. My speech is now affected and I have Urinary Inconsistency. Drs have been all over me for 5 years. MRI’s, CT scans, Brain Scans, just to name a few. They have been suspicious of MS, bone misalignment, Parkinson, Progressive Supra Nuclear Palatka, Multiple System Atrophy. All scary stuff. I am currently waiting on a Spring appt with Minnesota’s Mayo Clinic. A friend just introduced NPH, Normal Pressure Hydrocephalus to me and I fit the symptoms 100%. This gave me some hope again. Anyone familiar?

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@swift

It's hardest thing not understanding why your going through this difficult time, being in limbo we sometimes say, tis stressful and hard to deal with, not knowing is half the battle somewhat overwhelmed by things around you especially if the doctors can't understand why your body has reacted in some way, this is just stab in the dark , do you or have you had mercury fillings in your teeth ?! I've had similar thing happened to me something makes my body move without my saying or doing when I walk can't stand up or wobbling like I've been drinking when I am almost tea total ( so we say in England) doctors can't understand and because they are not able to understand sometimes they don't want to see you anymore. It's definitely frustrating.i don't know whether you have any other illnesses autoimmune diseases or family members had , but might be worth ask doctor what you think, triggers this off, where /when did this start for you ?! I've found chillies turmeric ginger root dandelion root all helps and especially taking sugar out of my lifestyle changes. Hope this gives you some peace of mind just knowing that your not alone can sometimes help. try to look for things that bring you joy , birds , horses mountain sea view … Keep a journal helps too … Kind regards swift hug from England

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I understand your frustration a lot. Hang in there! Its a long journey……

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@birdierobin

Hello. I too am new. I can barely walk or turn around, have fallen quite a few times. My speech is now affected and I have Urinary Inconsistency. Drs have been all over me for 5 years. MRI’s, CT scans, Brain Scans, just to name a few. They have been suspicious of MS, bone misalignment, Parkinson, Progressive Supra Nuclear Palatka, Multiple System Atrophy. All scary stuff. I am currently waiting on a Spring appt with Minnesota’s Mayo Clinic. A friend just introduced NPH, Normal Pressure Hydrocephalus to me and I fit the symptoms 100%. This gave me some hope again. Anyone familiar?

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Hi @birdierobin I'm currently waiting for word from Cleveland clinic regarding an appointment with a neuromuscular specialist. My current dr. has been diligent but unable to pinpoint a cause for my symptoms. And the baclofen only helps marginally regarding the muscle spasticity. I'm beginning to have pain in my feet and ankles due to the contraction of my toes and arching feet. Are you on medications for Parkinson's?

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