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20834869 tn?1528912928

Help, I have so many issues like MS, Could it be MS??

Hello everyone, I am brand new. Please dont think that I am crazy from the get-go. My main goal is to figure out what is causing everything. Its often hard to explain things because I have a hard time coming up with words. And yes, I've struggled with anxiety but I honestly dont feel that this is anxiety. Ive had episodes of spasticity three times before in the past two years, one with LOC while in OR prep that is documented in my medical record, and I am in pain all the time. But not knowing where it is coming from and seeing that the tests so far ( MRI without contrast, EEG and EMG) have been normal only adds to my anxiety. My ultimate goal is to figure out what this is, and what makes it happen. I dont want medications, I only want to know why and how it is happening so that I can know better how to make sure it doesnt happen while I am driving or while I have the children in my care (mainly while I am alone with them). If there is some water therapy or something that I could do to make it easier or to make the pain and Full Body spasticity not happen, I just want to know what it is and what I can do. I have been keeping a log of signs and symptoms and the pains in my body, sharp pain shooting/stabbing through my legs and arms, even flank pain and pain that feels like my ribs are in a vice grip, like someone has their arms wrapped around me squeezing tightly. I have been experiencing as well alot of times that my skin hurts, all over my back, neck and chest. Pain that is odd to describe but it feels like razor blades across my skin when someone touches me, or even when my clothes touch my skin. This happens to me alot. I have a hard time being touched because it hurts so much. I am just starting to notice a pattern between all of these "symptoms" or whatever they are, and it makes me wonder if it may be spinal cord related? I just dont understand how I can be having these things, the pain and everything, with normal tests that show nothing. The episodes of spasticity all over my body, (which scares me
the most). The headaches that feel like someone has hit me in the head with a baseball bat. The sharp pain that takes my legs out from under me. The tremors and numbness in my face and hands and feet. The hypersensative nerves and the constant skin pain..sorry for the long intro but you all have any idea of whats going on?
2 Responses
987762 tn?1331027953
Hi and welcome,

I'm going to re-post your question with breaks so it can more easily be read, you may not be aware but pwMS who have visual and or cognitive issues find reading and comprehending large blocks very difficult and sometimes it's impossible.....

"Hello everyone, I am brand new. Please dont think that I am crazy from the get-go. My main goal is to figure out what is causing everything. Its often hard to explain things because I have a hard time coming up with words. And yes, I've struggled with anxiety but I honestly dont feel that this is anxiety.

Ive had episodes of spasticity three times before in the past two years, one with LOC while in OR prep that is documented in my medical record, and I am in pain all the time. But not knowing where it is coming from and seeing that the tests so far ( MRI without contrast, EEG and EMG) have been normal only adds to my anxiety.

My ultimate goal is to figure out what this is, and what makes it happen. I dont want medications, I only want to know why and how it is happening so that I can know better how to make sure it doesnt happen while I am driving or while I have the children in my care (mainly while I am alone with them). If there is some water therapy or something that I could do to make it easier or to make the pain and Full Body spasticity not happen, I just want to know what it is and what I can do.

I have been keeping a log of signs and symptoms and the pains in my body, sharp pain shooting/stabbing through my legs and arms, even flank pain and pain that feels like my ribs are in a vice grip, like someone has their arms wrapped around me squeezing tightly. I have been experiencing as well alot of times that my skin hurts, all over my back, neck and chest. Pain that is odd to describe but it feels like razor blades across my skin when someone touches me, or even when my clothes touch my skin. This happens to me alot. I have a hard time being touched because it hurts so much.

I am just starting to notice a pattern between all of these "symptoms" or whatever they are, and it makes me wonder if it may be spinal cord related? I just dont understand how I can be having these things, the pain and everything, with normal tests that show nothing.

The episodes of spasticity all over my body, (which scares me the most). The headaches that feel like someone has hit me in the head with a baseball bat. The sharp pain that takes my legs out from under me. The tremors and numbness in my face and hands and feet. The hypersensative nerves and the constant skin pain..sorry for the long intro but you all have any idea of whats going on? "

I'll get back to you asap with a response........JJ

ps i'm the MS community leader
4 Comments
thank you, Im sorry I had posted from my phone and thought it would be read easier. sorry everyone
It's getting late over my side of the world so i will probably have to get back to you again tomorrow when my brain cells are not half asleep....

It's highly unlikely what you've been dealing with is related to a neurological condition like MS with your normal test evidence, and more likely to be related to severe migraine episodes, or even something seizure related if your entire body goes spastic and you experienced decreased level of consciousness. Have you ever heard of allodynia?

"Furthermore, the severity of allodynia in migraine correlates with the number of different pain syndromes, offering further evidence that a common, underlying cause may link these conditions together. It may be that if central sensitization develops with one condition, this predisposes a person to developing additional pain conditions. Depression and anxiety are also common in persons with allodynia-associated migraine and the other pain syndromes, but the cause for this link remains uncertain.

Allodynia arises from the brain, and stopping pain signals early can ward off allodynia. Preventing pain from coming again can ward off chronic allodynia. Tested treatments are less effective with allodynia so treat before it occurs. If allodynia occurs frequently use prevention to reduce risk of it occurring often."

https://americanmigrainefoundation.org/understanding-migraine/allodynia-when-touch-hurts-but-shouldnt/

Have a read of the article the american migraine foundation has on allodynia, it's an interesting easy read and might make some sense of what may be going on......i've got a few questions that might also help give you some direction but i'll get back to you tomorrow as my eye's are now playing ping pong..

Hope it helps......JJ
I have read about it and the doctors have ruled out literally everything BUT MS. My PCP feels that I could have MS and they only did one MRI without contrast. And they haven looked at my spinal cord or anything, other than the mri without contrast. I feel like giving up and just living with the pain and confusion and spasticity. Im lost now.
You've said "spasticity all over my body", spasticity, rigidity and hypertonia are sometimes used synonymously with damage to the central nervous system, namely upper motor neuron lesions and if your clinical neurological signs, MRI's etc are not coming up with lesions or clinical abnormality, using the term 'spasticity' in reference to these full body episodes 'might not' be the right medical term to make sense of it...

Do you mean that during these episodes, the muscles in your entire body will unexpectedly become painfully stiff, rigid, tight, shock-like contractions, cramp, tonic spasm, tetanic spasm etc and if your standing-ambulatory-mobile at the time you loose voluntary control of your body and you'll involuntarily collapse to the ground?

If you do those types of episodes would be more suggestive of something like a tonic seizure than spasticity...

"What is a tonic seizure?
Muscle "tone" is the muscle's normal tension at rest. In a tonic seizure, the tone is greatly increased: the body, arms, or legs become suddenly stiff or tense.

A person may be aware or have only a small change in awareness during a tonic seizure.
They usually happen during sleep and usually involve all or most of the brain, affecting both sides of the body.
They are short, usually less than 20 seconds.
A person may fall if standing when a tonic seizure starts."
https://www.epilepsy.com/learn/types-seizures/tonic-seizures

Keep in mind though that voluntary and involuntary collapsing would significantly alter the potential of it being seizure related or something completely different. The more common things are Charley horse leg spasms, structural spinal issues ie pinched nerve, slipped disc, degeneration, and etc which can produce a shock of intense pain and can cause vasovagal syncope. Pain can stimulate the vagus nerve and is a common cause of vasovagal syncope but the shock of it may be sending a reactive message to the brain that something is seriously wrong so the brain shuts everything down, causing a momentary lack in proprioceptive feedback and drops you.

It might be helpful to get a full assessment from a physiotherapist, have your blood tested for any electrolyte balances ie calcium, potassium, and magnesium, hormonal issues,
low blood sugar, hypothyroidism etc, consider seeing a pain clinic to see if a cause can be identified for your pain experiences and or see a migraine specialising neurologist to assess if what you are experiencing could be associated and discuss preventative treatment plans, behavioural changes to identify and avoid triggers etc

I hope that gives you some food for thought, but knowing what your problem is is likely the only way your going to find a solution that truly works for you........JJ      
987762 tn?1331027953
Sorry i missed you'd posted an update....."I have read about it and the doctors have ruled out literally everything BUT MS. My PCP feels that I could have MS and they only did one MRI without contrast. And they haven looked at my spinal cord or anything, other than the mri without contrast."

Technically MS is 'not'  one of the neurological condition that can cause episodic spasticity all over the body, all over anything is one of the typical red flags pointing away from conditions like MS, because of how symptoms from brain and or spinal cord lesions presents and develops over time, what your experiencing wouldn't be typical for a neurological condition like MS.  

I think you'll find they were looking for anything specifically abnormal with your brain, a brain MRI without contrast would still of shown up brain lesions if you had them, the contrast helps distinguish lesion type and helps identify if the lesions that are found are old demyelinating lesions or new lesions, new lesions light up like the lights on a Christmas tree with contrast. EMG's help diagnose muscle disorders, nerve disorders, and disorders affecting the connection between nerves and muscles and the EEG records electrical patterns in your brain which helps to diagnose conditions such as seizures, epilepsy, head injuries, dizziness, headaches, brain tumors etc  but normal MRI's, EEG's, EMG's do not rule out the possibility of someone having seizures, doesn't mean they were seizures either, just that normal doesn't rule seizures out!

Just a thought but if what prompted you to have the MRI, EEG and EMG was partly because of it being a medically observed episode during the OR prep, what you experienced at that time is different to the other 2 without LOC, the observed OR prep episode could of been opioid induced muscle rigidity...

"Opioid-induced muscle rigidity usually occurs with large doses of potent opioids given intravenously. These include drugs such as fentanyl, alfentanil, sufentanil, and remifentanil. Morphine and meperidine can also cause such reactions, but this is not common with the doses used during balanced anesthesia. There have been published reports of muscle rigidity occurring with relatively small doses of highly potent opiates such as sufentanil and alfentanil. The phenomenon of muscle rigidity is usually seen during induction of anesthesia when opioids are the sole or primary anesthetic agent. All the skeletal muscles are involved. The rigidity starts within 1 or 2 minutes of opioid administration and typically lasts 10 to 20 minutes."
https://www.sciencedirect.com/science/article/pii/B9781416022152500466

Hope that helps........JJ
2 Comments
i wasnt on any opiates i was just getting into the prep room where they hadnt even put the iv in or anything. i think i will leave this page as there is no help here only un educated assumptions
I'm sorry you feel upset or offended, i may not have told you what you want or expected but my intent was to provide you with factual information and ideas, please note the use of 'if and maybe', nothing i have said is an uneducated assumption which quite frankly is insulting to say to people who are only trying to be of help to you! Good bye and good luck!
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