Helps for living with different abilities needed

hello everyone. hope your holidays wonderful.

home now from ER at 4 a.m. sunday, too exhausted and in pain to sleep. fibro going full steam, kicked off by movement/seizure disorder out of control. ER said head back to neurologist, but have to find better one, he didn't know what to do with me. They are thinking epilepsy or neuromuscular disease. No signs of spinal cord issues like we had suspected. Meds not helping, getting worse by the day. Now speech and face involved too, so head to toes my arthritis has company all around.

If anyone else deals with movement or seizure issues, would you mind pointing me towards resources? This new me is kicking the old me's butt. My concentration is shot, use of hands limited to short spans of time, walking even with cane no longer viable.

Feeling helpless and incapable is frustrating, but refuse to give up hope for quality of life. Thanks for reading, and any helping hand you can offer.

hugs that make milkshakes,


Pharmaceuticals are certainly helpful but consider alternatives. If you suffer from a seizure or movement disorder, it may be that you also have severe and chronic muscle strain/injury. Massage therapy, yoga, aquatics (cautiously with seizure history), accupuncture, aroma therapy and dietary management.

My heart goes out to you. My sister has FM bad and she suffers greatly too! In your message I hear your hope and I respect your courage immensely. Did you ask about Lyrica? My sister took it on the advice of a neurologist but had to stop because it had bad side effects. Her GP told her to stop it and go back to good old fashioned Neurontin. I’d like to add to your hopes for a better quality of life. Hugging you, Francine

Have you been tested for neuropathy? Just wondering. Maybe that would give you some answers. I have neuropathy (not that extreme), but I do know there are lots of different kinds. I always thought that's something that only diabetics get, but that's not true. Only 1 in 4 people who have it, have diabetes. I hope this helps. I feel for you. Soft hugs, Ggirl

I feel so sorry for you. Meds don't work so we have to suffer. Everyday I feel like you, hopeless but I keep hanging on. I hate my life right now, it is affecting everything around me. My husband does what he can. He's a good man and helps when he can. through my insurance company I am allowed to have at no cost a physical therapist, a social worker and a occupational therapist. they all will come twice a week for 4 weeks. last week was the first time they came over. one massaged me, the other lady showed me what I need to get as far as trying to make my life easier, like putting a stool in the bathtub, one of those high toilet seats and handrails. It does help me get around better. i am sick and tired of this. my mind is gone and so is my body. i'm young, have a wonderful husband, live in a nice place and still I cry everyday because everyday seems to get worse. actually, it has gotten worse, now they tell me I have to have hip surgery on both sides. Great! I still don't know if this is in addition to my fibro or if it was my hips all the time, i don't think so because since I got a scooter last year I have not been walking very much so my bones are cracking like a popping sound every time I move and it is so painful I just want to scream out loud which I do sometimes. Doc told me not to walk too much since the bones are just rubbing together and it's making it worse. Hugs to you and hang in there.

Hi Per...I'm so sorry for the total discomfort you are in right now. I'm close to the'unable to walk stage' and the thought of it turns my guts upside down.

When you wrote about affecting your facial muscles/nerves and speech it rang a bell in the cranial neuralgias dept. I have one of these and I read on here all the time about these things being related. Go to Living with TN here on BensFriends.

Have you had a MRI, EMG or has anyone checked you for stroke with a CAT scan? Another thing you should do is what you said, get another Neuro. I'd use (and I have, successfully)the Doctors tab at the top of your profile page and try to find one from there in your area. I had to travel 4 hours for mine but it is worth it to have someone who understands and is committed to getting you well.

Keep that positive's like armour against the monsters! Keeping you in my thoughts and prayers as well. Be sweet to yourself

PeacenLove~Always~Laurel aka Northwoods G-Ma


This sounds like it could be similar to problems that I'm having. Have you had an EMG, to see if it is related to a seizure. Mine came up negative, but it sure looks like a seizure.

What I've found out about my muscle spasms that look like a movement problem, they actually travel from one area of the body to another, people with autoimmune arthritis in their joints will have muscle spasms from the inflammation. Has someone checked your C-Reactive Potein? They can be telling you there is nothing wrong with you, but CRP will tell you that's not true. When I went to the ER with what sounds similar to you, my CRP was 11. I have been having so many issues, but it doesn't appear like I have any major joint damage. My joints didn't even hurt until a year and half after ending up in the ER.

What happens with your face? Mine would spasm so the left side of my mouth would go up. When I went to the ER, it was spasming so bad that I didn't talk at times, because my jaw would spasm shut. That was a year and eight months ago, it never went away, it goes up and down, like a flare. The medicine that has helped me the most with them is baclofen. You may also try Aleve and see if that helps at all. I'm starting to learn more about it, since the rheumatologist proscribed it to me. I always thought Aleve was asprine.

I have concentration problems also. Found out that I'm low on B12. D-Ribose (I had to order it off the internet) has helped a lot with my concentration.

We should talk more.

My brother has movement disorder called familial tremor, and we are in the process of researching online all the gadgets that would make daily living easier for him. If you Google Assistive living aids for Parkinson's disease, there are some really helpful gadgets out there. Also the Parkinson's disease websites offer hints of how to live better with a movement disorder. I have a friend who got a service dog for her movement disorder. It's surprising how hand that dog is. So sorry for your frustrations.

thanks all for caring, sharing your stories, encouragement. Tremors and movement no rhyme or reason. MRI looked great. allergic to all meds mentioned. Ugh. online research tells me, tremor, clonic seizure, with my slurred speech and difficulty expressing what thinking. Rheumy says nothing but fibro and advanced for my age OA.

found epilepsy clinic and neuro program that deals with Parkinsons and other movement disorders at teaching hospital 2 hours away. See primary tuesady, hubby going with. could be anything from aneurism in brain, infection of nervous system, who knows.

weary. going. THANK YOU ALL SO MUCH,be back when can.

From having a friend who had unusual seizures, it depends a lot on how brain test (EEG) during seizure or right afterwards. pLus what they see on MRI and PET scans.

From those they normally can tell if you had specific kind of seizure. BUT, my friend, who was having grand mal seizures as i witness it ( have many times in my dogs as well as cousin with epilepsy) yet doctors still have not figured out what exactly is triggering hers.

They are now looking at all her medications as possibly being the cause. She is on many (over 10) with most over what is consider a normal dose. Some she is taking high amount that they say it would put a horse to sleep and not kidding..she is on lean size so not a heavy woman not due to size, just do not seem to work.

She did not start them till hurting her hand on the job causing severe nerve damage. Went downhill then gets better and she has over 6 months clear of seizures so she has obtain her driver's license back a number of times. But when they hit her a a month or more, she lose her bodily functions..even on those days her tests still come back with not all normal but not enough off to show any direction in her brain or even her body where it might be stemming from. They even have flown her by ambulance doing tests in the helicopter but still nothing. Trying to immediate scans as soon as she arrives...even had ambulance carry special equipment to test her with ASAP but nothing is showing but few mild abnormalities.

I know how much it has played havoc with her life. Not being able to drive when the nearest store is over 10 miles and it is just very small country catch all store. Nearer larger town where all her doctor's visits is about 45 minutes so she must have someone drive her in and back. I do not live near her but try to go visit her as often as i about 2 hour drive from my house. Plus, exhaustion and as you said lost of mobility. Some times she has to do PT to get it back again. There is losing normal bodily controls as well which she must reteach her body to hold again until she wakes up or can make it to the bathroom. This started in her late 40's and 10 years later still going on.

So i am very sorry and sorry i cannot help more. Since she has started weaning back the seizure have been at bay but like i said, we have had entire year almost clean...then boom!! back again. But i do have some hope...hopefully at least help clear up the confusion she has been having.

I hope you do find out...i say do some research and find the best neurologist in your area and try to get in to see them plus internist. Hopefully together they might see something everyone else has missed.

I should say this as well..she has gone to to Stanford and stayed down(over 2 weeks) there going through all their tests etc...trying to find the cause and they also came up with nothing. But you never if you have place that teaches in your area like Stanford, any of the excellent teaching medical colleges, there are many across the US, you might try the live in treatment they offer.

I sincerely wish you all the best! I hope they do find what the cause is plus how to treat it as it is really a not fun place to be...most people just do not have clue all you are now having to deal with and i admire your up beat attitude through it all!

ps, one thing that did help of all weirdness..was marijuana. She seemed to do a whole lot better when she was using it but her pain doctor does not approve her to use it. She even offered to give up narcotic drug and use only it but they would not agree.

It is hard, she had stress in her life, like most of us. I could see that it did clearly affect her but not necessarily cause the seizures but once they started, her stress could just make everything worse until she calmed down again. you follow the wolves in yellowstone area? was reading about # 6 female...eventually was shot, was so very sad. We now have a female..we think, here in Northern Calif..keeps going between Oregon and here. I just hope no one goes looking for it to harm it.

everyone always thought it was so strange that I who have been studying wolves all my life since elementary school go and get a disease with lupus in it!!

Hi Perplexed,

I am so sorry to hear that you are going through all of this. Truly, my heart goes out to you. Do you have a Rheumatologist that you see for the Fibro? I would think that as specialists they would be the best to help you figure this out and/or refer you to other specialists as needed to figure this out. All in all, I hate to say it but I think its probably just the Fibro. It has so many odd signs and symptoms. I don't have tremors like you, but I do have muscle spasms and my legs will jerk from time to time. Sometimes my fingers and/or toes do move on their own. I have had numbness on parts of my body including half of my head, etc for long periods of time. My nuerologist was confused by this and I have been tested for so many things - all things come up negative. Its the fibro. Sometimes you feel like you just wish there was a different diagnoses so that you can pinpoint the symptoms, get treatment, and move on. But, fibro is so weird and ever changing (at least by my experience). Keep asking about and trying different meds. Some do offer relief and there has to be some that you are not allergic to. The lyrica does help some and it is actually a seizure med, so it may offer some help. There are meds similiar to lyrica so perhaps one of them will help and you will not be allergic to them. I really hope you get some relief. Take care, holly

I am so sorry. I take topamax and lamictal for seizures. I have nothing like you’re going through. It seems my physiatrist knows more about it than my neurologist though. Gentle hugs, gentle soul.

Hi Perplexed,

I understand, I know personally what you are going through. You are doing the right thing by getting help from those resources nearest to you, such as going to the ER when you feel sick. Never give up on any answer which comes from a doctor you are not satisfied with. You know your body better than anyone so you are the one that knows when something is not right with you. Keep a journal of how you feel and the changes you go through, what medicines you took, or what food you ate; You are the one who gives the doctor the diagnosis by the symptoms you have and from that they do "Process of Elimination," to try and figure out the causes of the symptoms you produce. Most of the time if its not life threatening, physical life altering or causing one to decline in health you won't be admitted to the hospital.

Keep up with what you are doing, not settling for medication that is not working, keep pushing for what is right for you, and only you can figure that out with a joural. Keeping up with the changes you go through is very important to finding something that will help you. Don't Give Up is the key to at least having humility about what you are going through. I pray you find a "Happy Medium" and at least get some relief.

Have a Peaceful Holiday,



Thanks for more wonderful responses. wish I could reply to all, sorry about that. unable to type well. was in ER again Tuesday, daughter called ambulance, they did CT scan said it was clear. Am in process of getting in to see doc at nearest teaching hospital's neuro department.

so exhausted yesterday, put on a soft neck brace to rest muscles. within 1 hour speech normal, movement more normal for me. right foot still drags, etc. Take it off? within 1 minute all symptoms restart. has progressively gotten worse these last 3 years. did not have before fusion surgery. so either spend next 50 years in brace, or someone will solve the puzzle. Floored that ER here says psychosomatic. sorry but not good enough to fake blood pressure of 224/119. If I could, would share secret to use in reverse for good like curing fibro, cancer, autoimmune diseases, and more.

be back when able. thanks for being so supportive and caring. much love, Perplexed

p.s. neck brace needs bling and camouflage. feel free to share ideas if creativity.

you sound so much like my friend....she did have as we called it a 'gimp' issue with one leg for a bit. I forgot about that but it did get better quickly within a few months.

So you had fusion might want to go back and get the actual notes from that surgery and read them very carefully. You might also get the surgical RN's that were in during your surgery and ask if they can remember it and how it went. Often or usually, doctors will not tell you if something went wrong during your surgery.

I had a emergency surgery that took 3 hours longer and just things people said to me. Even the surgery RN came in and checked and even though this is very small town and you get to know people...she never had in past surgeries. So i asked the doctor if something went wrong and she told me i coded but they got me back. So might also google search about the type of surgery you had, and see what specifically tends to go wrong and even rare ones...if any match up with now is going on with you. But sure sounds like now your neck muscles are pinching out spinal cords affecting those areas. I look up also how that occurs and what can cause it as well. I bet you find the cause eventually. Try to do within a year of that surgery...if doctor messed up usually is year limitation of having them be responsible. Or could have been honest accident. either way just be nice to know and from there work towards a solution about your neck brace.

I am so sorry that ER thought you were making it cannot fake BP or fevers etc!!

I say get some cool markers and color like bling..get the old glue gun out..just keep sharp itchy things not where touches skin!

I am so glad that all your skills are coming back...this had to be very scary for you!