Discussions By Condition: I cannot get a diagnosis.

Head drop, sudden severe musle weakness

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: tony79
  • March 1, 2009
  • 01:24 PM

My wife has been to 2 neuros and several doctors, had 3 MRIs (brain and spine and a ton of blood work done,
I would appreciate any suggest or other things I could research. Searching for
some kind of answer.

My wife has attacks every 2-3 weeks as described below:

While we were eating at a restaurant on Sunday she said her stomach hurt and
she did not "feel right". About 2-3 minutes later her head dropped and rolled
around as if her neck muscles were not able to support the weight.

While helping her walk out of the restaurant the weakness went to the rest of
her body and she dropped. There was no warning for the collapse.
She had to be carried out.

We eventually got her into the car and started home so that we could let her
lie down.

During the drive she had another attack or a continuation of the previous one.
This time I was able to see some symptoms that I have not noticed before.
Her head dropped again and began to roll left to right while her
head was facing downward.

I picked her head up to help support and stop it from rolling. I saw that her
jaw also dropped and her face muscles were twitching. I would describe her
expression as a snarl. Her right lip raised and her right nostril flared.

Both arms were also jumping up and down quickly bending from the elbow like an arm curl.

She was conscious and was able to talk during the episode but was not completely lucid.

When we got home I gave her 50 mg of Trazodone and later another 50mg. This seem to help some so that what we do.

She was able to walk about 45 minutes later with some assistance and remained weak the
rest of the day.

There is no trigger for the episode that I can come up with. No similarities between the
previous attacks time of day, eating, activity, etc.

Problem has been on going for about 1 yr.

If you have any suggestions I would greatly appreciated it.

Reply Flag this Discussion

11 Replies:

  • My wife has been to 2 neuros and several doctors, had 3 MRIs (brain and spine and a ton of blood work done, I would appreciate any suggest or other things I could research. Searching for some kind of answer. My wife has attacks every 2-3 weeks as described below: While we were eating at a restaurant on Sunday she said her stomach hurt and she did not "feel right". About 2-3 minutes later her head dropped and rolled around as if her neck muscles were not able to support the weight. While helping her walk out of the restaurant the weakness went to the rest of her body and she dropped. There was no warning for the collapse. She had to be carried out. We eventually got her into the car and started home so that we could let her lie down. During the drive she had another attack or a continuation of the previous one. This time I was able to see some symptoms that I have not noticed before. Her head dropped again and began to roll left to right while her head was facing downward. I picked her head up to help support and stop it from rolling. I saw that her jaw also dropped and her face muscles were twitching. I would describe her expression as a snarl. Her right lip raised and her right nostril flared. Both arms were also jumping up and down quickly bending from the elbow like an arm curl. She was conscious and was able to talk during the episode but was not completely lucid. When we got home I gave her 50 mg of Trazodone and later another 50mg. This seem to help some so that what we do. She was able to walk about 45 minutes later with some assistance and remained weak the rest of the day. There is no trigger for the episode that I can come up with. No similarities between the previous attacks time of day, eating, activity, etc. Problem has been on going for about 1 yr. If you have any suggestions I would greatly appreciated it. Hi tony, there is a great Neurologist who is a member here on the forum Dr Cottle, I'm sure when he see's this he will reply to you, he will give you more useful advice than Electrosensitivity. There are other creditable members who will do their best to advise you. When your wife has taken ill like this have you brought her straight to ER, letting them see excatly what is happening at the time ? If not, thats what I would do. Hope you find the correct advice/diagnosis/treatment soon. Best wishes........:)
    Tootsie 628 Replies Flag this Response
  • yes, the first 2 attacks we call 911 and the emc brought her to the ER. They ran ct scans and EKg etc nothing found. Release both times as has having general weakness. So when it happens now we try go get her to a place were she can rest for a couple of hours.
    tony79 6 Replies Flag this Response
  • What bloodwork has been done? Anything remarkable on the CT's? What advice did the neuros you saw give you--what do they think is causing this? How does she feel after the episodes? Is she always coherent during them? Has she had an EEG to determine if she is having seizures? Is she on any medications? Does her face remain in that 'snarl' even after the episode?Sorry for all the questions, but more information would help--as much as you can give us. I do hope you can find an explanation for all this...it must be tough on your both going through this without an answer to the 'why'.
    Harmonium 322 Replies Flag this Response
  • I'm wandering if maybe you should bring her to ER everytime this happens. I mean she could take the next one & you just wouldn't know if it was going to lead to something more serious. Also it would let Doctors see excatly how often it is happening, & they could monitor her. Maybe others will not agree with this, but i do think that is what I would do with a loved one of mine. It does sound scary, I hope you get to the bottom of this soon. Best wishes....:)
    Tootsie 628 Replies Flag this Response
  • Okay, well the initial problem we have is rather conflicting signs in the presence of what is being described as seizure activity. The neural circuits which would be involved in any type of clonic seizure would affect consciousness to the extent that persons experiencing such activity are nor aware and cannot simultaneously communicate. This is true for petit mal seizures as well, although the separation from consciousness is far more brief. Also, there is evidence of both myoclonic activity in the face and arms that is contrasted by tonic absence limited to the neck and jaw. Particularly where the jaw is concerned, this would be inconsistent with myoclonic activity in general. A true head drop is induced by weakness of the extensors and marked by exaggerated curvature at the cervical level of the spine, not a sign demonstrated during myoclonic seizure activity. A drop attack, by contrast, is a sudden loss of tone demonstrated in persons with cataplexy such as patients with narcolepsy, or with patients with Coffin Lowry Syndrome and similar genetic disorders. Again, the head drop in the instance described would be neurologically incompatible with the other features observed. Also, activity thought to be seizures wherein the upper limbs are drawn rhythmically toward the shoulders or chest does not suggest epileptiform activity. In addition, incontinence would almost invariably occur as a consequence of this type of seizure activity. Based upon your description, my opinion would be that this is psychogenic non-epileptic seizures, or PNES. Still, however, this diagnosis would be best supported by having a sleep-deprived EEG performed. Realize that PNES constitutes a true underlying condition, but does not equate with actual epileptiform seizures. My suggestion here is an EEG to support PNES. Also, can you tell me whether during the episodes her eyes are opened or closed? Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • How old is your wife? I assume she has not had any incontinence issues during these episodes - is this correct? Please post any medications she is taking - is she on any hormonal bc? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Try to arrange for your wife to be able to have a EEG during one of these seizure like eposides. A person who does EEGs (and was doing one of my scans) once informed me that some things arent visible on them unless one is taken at the time of the incident. One thing you may want to consider and rule out is some kind of chemical exposure attack (maybe the last eposide of hers was triggered off by something in the food?? or something like someone wearing a certain type of perfume in the resturant??.. perfumes are often a major trigger for ones with MCS). Im suggesting this as I have multiple chemical sensitivity (MCS) as part of another condition I have and I know this condition can manifest in strange ways eg feeling not well then a sudden collapse. MCS reactions often happen fast and can be dramatic. Strange neuro issues may occur during a chemical attack to those sensitive. I myself one of the neuro symptoms I get is going weak, falling down and shaking/tremors, tics.. (along with confusion and according to others my language at that point isnt understandable) etc She was able to walk about 45 minutes later with some assistance and remained weak the rest of the day. That would be consistant to many chemical (perfume) exposures.... as once one gets out of the triggering environment away from the cause.. one rapidly improves even from collapse. A bad exposure often takes me about 15-20 mins to recover from (but my MCS isnt quite as bad as the seizure eposide your wife had)... but then i may be left feeling confused, tired, weak or with a slight headache for many hrs or for the rest of the day after it. I suggest to just try to work out if there is a MCS trigger and hcnce maybe this issue going on.
    taniaaust1 2267 Replies Flag this Response
  • First off I would like to thank everyone for their detailed responses. I will try my best to answer any questions you had. My first post was not full list of symptoms. I will try to be more detailed. =========================================================================================== This is an initial write up I did for the doctor when she first started having the problem. ========================================================================================== 26, white, 5ft4, 135 lbs, 2 children. 1 year and 4 year old. no family history of seizure or diabetes. 1st Episode June 10 12:30PM Last week we were driving and my wife suddenly got weak and had blurred vision. About 10 minutes later she had a seizure which lasted about 45 seconds. She appeared not to lose consciousness. Afterwards she was unable to move her arms and legs for around 15-20 minutes. EMS tested blood sugar levels and they were ok Slight fever 101 CT scan at the hospital was normal Urine test normal Released from the ER no cause found. She was referred to a Neurologist for follow up. 2nd Episode June 20 5:30PM Laurens right arm started to tingle as if was falling asleep. She felt dizzy, weak and started to have blurred vision. This sensation progressed to the rest of her body. A few minutes later she could not move her arms or legs at all and was completely paralyzed from the waste down. She remained conscious during the event and was able to answer simple questions but was not fully coherent. Both ankles were swollen. Feeling and movement to her arms and legs returned after 30-45 minutes. Afterwards she was extremely tired. EMS tested blood sugar level and they were found ok Slight Fever 101 tested blood and urine and nothing found Symptoms prior/during/after episodes She has had several problems that are worth noting as they might be symptoms of her current condition. 1. Around 3 years prior she started to suffer from what we think is RLS after she gave birth to our first child. At night she would have muscle spasms and aching in her legs that would prevent sleep. 2. Legs and arms fall asleep quickly 3. Sudden dizziness 4. Severe fatigue (fatigue is continuous, more sleep does not help) 5. Aching joints and muscles after activity. For example writing a few paragraphs with a pen. The next day her hand will hurt. 6. Numbness and tingling in arms and legs, more so on the left side of her body 7. Feels spots of burning or cold on arms sometimes =========================================================== It seems like the last couple of episodes have been similar to the one I described in my initial post. The duration of the attack is usually around 30s-1 minute. After which she her muscles are so weak that she is unable to walk. What is most concerning is that in the last week she has had to episodes and 2 other time where she felt like another was coming. Originally there has been about 30 minutes warning but now there is maybe a 1-2 minute warning before it happens. Her description is as follows: "Usually start with dizziness. She describes it as dizziness when she switches focus on something else (turning head or focusing eyes in a different direction). Jaw gets heavy. Focusing on something makes it worse. Head starts to bob, muscles are so weak and if I try to move them it makes them more weak. Shoulder and other muscles twitch." The first attack did resemble what I would call a full seizure the first neurologist in her report said it was syncope, but I have seen on a few occasions where people passed out and had convulsions and this did not resemble it. I really don't think what is happening now are seizures, but I could be wrong. I did come across atonic seizures which describe a similar head drop, but from what I read it often begins in child hood. We have had an EEG. I cannot say what kind but I can tell you what things they made her due if that helps. While lying in a bed in a dark room they let her fall asleep temporally. Next put a flashing light over her face and changed the frequency that it flashed and final made her blow on pin wheel while the strobes were changing in frequency. I believe it was to see if it would trigger a seizure but they found nothing. From what I have read if the problem isn't ongoing during the test they usually do not find anything. Also was sleep deprived before the test. Harmonium Nothing anomalies mentioned on EEG, MRIs, or CT scans. First neuro released her from her care. We tried to get a follow up but she sent us to another neuro in a different practice. His advice was to go see a physical therapies for the weakness. Fortunately her face does not remain in a snarl ;). It look more like a muscle twitch. I do not have all the different blood test she has had. I will get the most recent soon and post them. One thing that was noticeable was that her vitamin D levels were low. JCottle I would agree I really do not think they are seizures. If she is not aware during or losing consciousness I would have to say it is brief. Her eyes do remain open. I trying not to have false memory, but I would say they are half way open. I have not heard of PNES until now. I am assuming if all test from a sleep deprived EEG come back normal that PNES could be a possibility? acuann She has never had a sudden loss of bowels during an episode. She did on 2 occasions not during an episode have a problem. we were thinking that is was not related. I will not rule anything out at this point. lexapro 10mg for about 1 year taniaaust1 I also have not heard of MCS until now. I will look into it further. I will say that the location of the attacks has verified. 2 in the car, 2 at our house, 1 at a restaurant, 2 at Grandparents house. I cannot find a common trigger. Also she doesn't have head aches. Questions: We have been considering myasthenia gravis or MS. I know that some people have clean MRIs and later are diagnosed w/ MS. So my question is do MG or MS have sudden attacks similar to this? Thanks for the help.
    tony79 6 Replies Flag this Response
  • I suggest to get her low vitamin D treated and then after treatment have it retested to make sure it is in a good range. Most doctors are not up to date with the latest on vitamin D and D deficiency. D deficieny can cause many different symptoms.. including muscle fatigue and pain. Symptoms prior/during/after episodesShe has had several problems that are worth noting as they might be symptoms of her current condition. 1. Around 3 years prior she started to suffer from what we think is RLS after she gave birth to our first child. At night she would have muscle spasms and aching in her legs that would prevent sleep.2. Legs and arms fall asleep quickly3. Sudden dizziness 4. Severe fatigue (fatigue is continuous, more sleep does not help)5. Aching joints and muscles after activity. For example writing a few paragraphs with a pen. Thenext day her hand will hurt.6. Numbness and tingling in arms and legs, more so on the left side of her body7. Feels spots of burning or cold on arms sometimes With those symptoms she could have chronic fatigue immunity dysfunction syndrome (CFIDS). (this is the same condition I myself have.. when i mentioned i had a condition along with the MCS). http://wwcoco.com/cfids/bernesx.html With CFIDS one gets POST EXERTIAL symptoms (fatigue and pain etc) after doing minimal activities eg one will get a delayed reaction to activites (1 to up to 3 days delayed reactions from things).. such as what is happening with your wife with the aching the next day. I'd think she probably would have hand fatigue going on with this aching the next day too. One can get so ones hand is paralysed, pain and weakeness or shaking from the activity one did with it earlier. I can be left unable to write at all due to that symptom. "legs and arms fall asleep quickly" Those with CFIDS often have poor circulation.. This is due to a couple of things which are often found in this condition 1/ poor blood volume (highly specialised tests thou need to be done for this.. so it's something which isnt usually tested for) 2/ certain blood issues eg hughes syndrome(antiphosphidlipid syndrome) (this isnt usually tested for either, but specialised blood labs may test for it). CFIDS as it is a mitochrondrial/cellular issue (recent studies are proving this), CFIDS can affect all of the body. Mitochrondria provide the energy to each cell.. so if there is a fault with this.. one can find oneself suddenly without energy and with many other issues. (there is currently no public scientific test out for CFIDS so they currently have to diagnose on the symptom complex... there is a test thou which shows up issues in mitochondrial function.. and they are saying they will have a CFIDS blood test publically available within next couple of years) I suggest you to find a CFIDS specialist (someone who is experienced with dealing with CFIDS patients) to get this diagnoses ruled out (or in). (Continuous fatigue in which sleep dont help.. if it isnt sleep apnea.. it could well be something like CFIDS if there are many other symptoms going on too including strange neuro ones).
    taniaaust1 2267 Replies Flag this Response
  • Problem has been on going for about 1 yr. will not rule anything out at this point. lexapro 10mg for about 1 year Okay, well I would not rule out that lexapro could be contributing to this problem. The side effects of lexapro include seizures, and this drug is contraindicated for seizure disorders... This doesn't sound like a classic seizure to me, but I still think there may be a connection there...it is VERY coincidental that her symptoms appeared around the same time. Has she ever missed a dose? Has she ever used alcohol with this drug? Has she ever taken any OTC meds or other meds like antibiotics along with this drug? There could be a connection here if she even missed a dose this could have triggered something. I have had patients try to get off of lexapro and experience severe electric shock sensations in their brain...this drug is scary IMO. Please don't EVER have her just stop this drug. She should talk with her doctor about slowly weaning off of it, and perhaps changing it for a different med. I feel this should be ruled out. Side effects of medications and drug interactions are often the last things a doctor will look at. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Tony, Just wanted to get your feedback on my post. How is your wife doing? Best wishesDOM
    acuann 3080 Replies Flag this Response
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