Psychosomatic spasticity?!

[Smilebug]

So, after my appointment with my PCP today, I don't know whether to be proud of myself for advocating for myself or embarrassed for pushing for a diagnosis. After a "diagnosis" of "paresthesia" and hyperreflexia from the neurologist and a clear MRI, I was a little frustrated because I believe that there is something going on, just maybe not ms. But, maybe my feelings aren't so trustworthy.

I told my PCP that after a little over a month with just a little tingling and fatigue, I had a few weeks of extremely stiff, crampy muscles in mostly my left thigh and arm and some tightness around my torso at night. For the first couple of weeks, I was walking with a limp. Now it's just sometimes that bad. She doesn't think I have fibromyalgia and really has no idea what it could be. I asked if would be OK to get a second opinion at a large research hospital (the neurologist I saw works at a sleep clinic).

She agreed, but is worried that I won't accept it if this new neuro finds nothing. She suggested that my symptoms might be psychosomatic because I have a history of anxiety. I know that the brain is capable of a lot, but this suggestion hurts. I didn't know anything about spasticity until I started experiencing it. Still, I'm questioning myself. Is this all in my head? Is there a point to seeing another neuro? Is my desire for answers reasonable or is time to give up? She said even if it is ms, there's no rush to treat it. She also said that sometimes people have neurological symptoms that go away and we never know what caused them. Why do I have such a hard time accepting that?

[SNOOPY]

Hello Smilebug,

I asked if would be OK to get a second opinion at a large research hospital (the neurologist I saw works at a sleep clinic). She agreed, but is worried that I won't accept it if this new neuro finds nothing. She suggested that my symptoms might be psychosomatic because I have a history of anxiety.

Although your PCP has a concern that your symptoms are psychosomatic she is willing to refer you for a second opinion, that's a keeper

I know that the brain is capable of a lot, but this suggestion hurts.

Yes, I know and I am sorry you feel hurt.

I'm questioning myself. Is this all in my head? Is there a point to seeing another neuro? Is my desire for answers reasonable or is time to give up?

Only you and your Drs. can determine the answers to your questions. Maybe there is a medical reason for your symptoms or maybe not. Only time and testing will give that answer.

Some people spend hundreds of thousands of dollars to find a medical reason for their symptoms and never receive a medical cause. This was the case for one young lady I know. Her parents literally did this and took her to The Mayo Clinic and the Cleveland Clinic. After all was said and done her diagnosis was Conversion Disorder.

Conversion Disorder is also known as Functional Neurological Disorder. It has very real symptoms and makes daily living very difficult for those who have it.

Information about Functional Neurological Disorder: http://fndhope.org/fnd-guide/symptoms/

I didn't know anything about spasticity until I started experiencing it.

You don't need knowledge of a symptom to experience it.

Take care!

[Smilebug]

Hi Snoopy,
i can understand going to those lengths for your child (almost!), but never for myself. If I decide to get a second opinion, that will have to be enough unless something new comes up. I do like my doctor. She made a point to say that she doesn't think I'm making anything up, so I appreciate that. The idea that I could have conversion disorder is pretty disturbing and would be extremely hard to accept, but I appreciate the info! I think I prefer the "sometimes these things just happen and we don't know why" explanation!

[Smilebug]

Oh, and by saying that I didn't know anything about spasticity, I just meant that I couldn't have just gotten it because I was reading about it - like I unconsciously caused it through suggestion. 🙄

[Smilebug]

I'm sure I'm not the only one in this position

So, I've been thinking about this a lot. I imagine that there are a lot of people who have been told or to whom it has at least been suggested that their neurological symptoms are psychologically based. For people who have very brief symptoms or tingling everywhere for a few minutes or something similar, that might make sense.

However, it seems like some doctors tend to go to this explanation when they have done all the tests they can think of and don't know what else to do. Once they say it's psychosomatic, they don't have to try to figure it out any longer. I actually think my doctor wasn't trying to do this, she really thought it could be psychosomatic because the only other idea she had was ms and there's not enough evidence for it right now. And I guess having a history of anxiety makes this more likely, but I really don't think it's true in my case.

I have never had any physical symptoms before. Also, the pattern and nature of my symptoms doesn't sound like anxiety in my opinion. In the past year, I've had three distinct periods of symptoms, about a few weeks long each. First tingling in feet and legs, then tingling in my arms and weakness in one hand along with the leg tingling and burning, then spasticity in my legs and arms. Significant fatigue each time, only really bad during this time. In between these periods I only had tingling at night or when I was really hot. Is this ms that isn't detectable in my brain yet, I don't know. But symptoms that are this specific and occur in a pattern like this, don't seem like anxiety to me.

I'm sorry to go on a rant, I'm just frustrated and continually confused!

[jreagan70]

I actually think my doctor wasn't trying to do this, she really thought it could be psychosomatic because the only other idea she had was ms and there's not enough evidence for it right now.

Hi Smilebug:

There's no way to know for sure from what you've been able to tell us, but maybe part of the issue is that your doctor has only one other idea about what might be causing your symptoms. There are more other possibilities. We just can't know from what you've told us what you've been worked up for and how extensively.

MS is the obvious first suspect for neurological symptoms that don't have any other known cause, but if the evidence isn't there, then it just isn't there and other things have to be looked at in more depth.

Not only are your test results negative for MS, MS doesn't act like the way your symptoms are showing up. MS doesn't show up by causing symptoms all over the body while showing no evidence on MRI or other tests.

The nervous system is wired in "circuits." In MS, for you to have symptoms all over your body, there would have to be lesions on multiple circuits. While MS can affect several areas at a time, it isn't typical for there to be so many lesions affecting so may areas at the same time early on. AND it isn't logical that there could be so many lesions, but none of them show up on MRI, and all the other tests that would indicate so many lesions would all be negative.

Since MS doesn't strike all over the body at the same time, it makes sense to start looking at things that can affect large areas -- or the entire body -- at the same time. Even though you may have had general blood tests, maybe it's time to look at them again or pursue them in more detail. When things don't make sense, the investigation really has to go back to the beginning to look for things that have been missed or misinterpreted. That's still not a guarantee that an answer will be found, but if one is there, it will be impossible to find otherwise.

It sounds like it's time to look at your blood chemistry again -- vitamin and mineral levels of all kinds, and a broad spectrum of hormone levels, including weird things like parathyroid hormone. And it pays to look into weird genetic things that were bypassed before because they didn't seem likely. And toxic exposure has to be looked at, too -- things like molds and chemicals that you may have been exposed to or are ingesting (for example, do you live or work near a place where pesticides have been used, or are you drinking 6 sodas a day that are artificially sweetened with a chemical you might be sensitive to?). All of those things involve substances that circulate throughout the body.

The periodic nature of your symptoms doesn't automatically mean that you have some kind of relapsing-remitting disease. It's also possible that you may have been exposed to some kind of environmental factor that presents only periodically in a way that's so subtle, so normal that it never drew your attention as being unusual.

MS does have some subtleties that can make it difficult to diagnose, but it isn't so mysterious that it causes body-wide symptoms but is completely invisible and undetectable. So if the evidence for MS isn't there, it's time to go back to the beginning at take a harder look at other possibilities.

[SNOOPY]

Hello Smilebug,

So, I've been thinking about this a lot. I imagine that there are a lot of people who have been told or to whom it has at least been suggested that their neurological symptoms are psychologically based. For people who have very brief symptoms or tingling everywhere for a few minutes or something similar, that might make sense.

I have never had any physical symptoms before. Also, the pattern and nature of my symptoms doesn't sound like anxiety in my opinion.

I would like to share the story of the young lady I mentioned in my previous post who was ultimately diagnosed with conversion disorder.

She was/is a neighbor as well as a friend of my Daughter's since the girls were in elementary school. She was very outgoing, very much an extrovert. Through the years the girls stayed close friends inside of school as well as outside of school. She was very active and involved in many activities outside of school.

Approximately mid way through 7th grade her health changed drastically. She started having horrible headaches/migraines, she was having seizures, her legs hurt, abnormal sensations, tremors/shaking, and sensitivity to touch

She went from walking, to crutches, to a walker, to a wheelchair. There was a period of time I was helping her parents out and taking her to school with my children helping to get her in/out of the vehicle and in/out of her wheelchair.

There were times (days, weeks, months) she was back to her normal self.

Even if her walking was okay she continued having severe headaches/migraines and seizures. The seizures were non-epileptic.

She is now 24 years old. She lives at home and I'm not sure if she currently has a job or not. She went to numerous Drs. through the years with a multitude of testing and as I stated previously, flown to a couple of very well know Clinics. The diagnosis of conversion disorder is correct.

the pattern and nature of my symptoms doesn't sound like anxiety in my opinion. In the past year, I've had three distinct periods of symptoms, about a few weeks long each. First tingling in feet and legs, then tingling in my arms and weakness in one hand along with the leg tingling and burning, then spasticity in my legs and arms.

I don't know if your symptoms are based in the subconscious, anxiety, or not. Only you and your Drs. can figure that out.

I do know it is possible for the symptoms experienced by the young lady I told you about and the symptoms you are experiencing can most definite be caused by mental health issues.

[Smilebug]

I think I'm starting to get it

Thank you for sharing that with me, snoopy. It must have been awful for your daughter's friend and her parents. I hope she is doing better now.

thank you jreagan for that explanation. Something clicked when I read it and I think I understand why it would be impossible for my symptoms to be ms. I guess I wasn't really recognizing how many different areas of my body were involved and how that didn't make sense without obvious lesions. The past month I've been tired and in pain and I wanted to know why. Anyway, what matters is that I stop believing that something is going on that isn't. I convinced myself that I had ms and disregarded the evidence to the contrary. I never thought I would be so foolish. I'm a little ashamed.

I will keep following up with my PCP to see if there is something that can be identified, but if not I will focus on trying to improve my physical and mental health and see where that takes me.

Thank you to both of you (and everyone else here) for your help and patience with me. I'm really sorry that I have been such a nuisance. I wish you the best. 🙂