| Author |
 Topic  |
|
|
mom2aidan2002
14 Posts |
 Posted - 04/26/2010 : 21:48:50
|
I am really struggling right now and any advice would be appreciated. Back in January I developed my most unusual symptom yet. It started with a sensation of having cat hair lingering on my face even when there was no hair and progressed to intermittent feelings of burning, cold, wetness, tingling, etc.. Sometimes I feel like there is a scarf or material on my chin, sometimes I feel like I am drooling (but am not--there is no wetness there), sometimes I get extreme heat/burning, other times it is cold burning. The location moves from my cheek to chin, to upper lip, nose, ears even. I also sometimes have burning in my hands. When I touch my face, I feel like there is an "echo" there--there is a sensation of something still on my face that lasts for minutes. Sometimes touching my face leads to an increase in pain.
I did the panic thing--had a huge workup--labs, MRI of neck, head. ENG, etc. and the only "abnormality" was decreased cold sensation in my right hand. I also tested positive for arsenic, but followup 24 hr urine was negative, so the doctor thinks it was a false positive based on eating fish,etc. So, no tumor, no cancer, no MS, nothing diagnosable. A neurologist thought it might be herpes neuralgia, but I have never had a lesion. I even tried prednisone and acyclovir just in case, but had no change in symptoms.
I am a TMS'er for 12+ years (back pain, sciatica, TMJ, phantom smells, twitching, etc.) and had been totally pain free for a long time. Anytime I had a flare up I could use Sarno's techniques to stop any symptoms from taking hold within a week or so. But this set of symptoms is SO incredibly bizarre I am having a really rough time. Muscular pain is familiar in some ways. We've all had sore legs or arms or whatever. So even when your back really hurts, at least it seems in the realm of "normal". (At least it did to me). Even when I struggled with sciatica, which of course is nerve pain, it didn't have the same bizarre quality that these facial symptoms do. The sciatica hurt LIKE HELL, don't get me wrong, and I was terrified of it for 2 years until finding Sarno, but once I got the TMS diagnosis, it was SO much easier to ignore and move on from--even tho it took a good 6 months and a few flare ups to really get under control.
With this, I have been going along and been "surprised" by a feeling of ants/bugs under my skin and then realize--oh my gosh, it's my face again. That was at the beginning too--before the workup, when I initially thought it was TMS. Now I have 24 hr symptoms and nothing seems to be making it better.
My doctor has prescribed neurontin, which I was told can really help with paresthesias and burning, but for some reason I am afraid of taking it. Part of me feels that if it doesn't help I am really stuck, but part of me is trying to work with the TMS diagnosis and doesn't want to feed a medical explanation. It is just that all my successful strategies are not working and I find myself cycling in and out of depression--feeling that this is going to go on forever. Even tho I keep working, keep trying to ignore it, it is always nagging at me in the background--it is so different from my other TMS symptoms. When I got busy, distracted, I felt no pain with my other symptoms, but this is unrelenting.
I have been really helped by this forum before. Any thoughts or advice would be appreciated. I feel I need a breakthru of some kind.
THanks! |
|
|
pan
United Kingdom
173 Posts |
Posted - 04/27/2010 : 13:52:17
|
I have been diagnosed with undifferentiated somatisation disorder and part of accepting this diagnosis was understanding that my 'symptoms' have to worry me in order for them to be valid for me....if I can rationalise and 'box off' a symptom it will quickly disappear as it is no longer fit for purpose and becomes redundant. Once this happens I quickly symptom shift and a new and improved symptom and/or ailment will pop along that will endeavour to put me in the worry tailspin. Make of that what you will.
All I can say is that I too have suffered and still suffer from phantom skin parathesia and I am pretty certain that it is a somatic response to stress and anxiety. If you visit any anxiety forum you will find 1000's of people who have similar presentations of phantom parathesia and who fall into the trap of believing they have a neurological disorder such as MS or ALS etc and as a result the symptoms get worse and worse.
I obviously cannot say what is causing your symptoms but judging by the work up you have had I think you can safely say that it is highly unlikely to be organic in origin. Why not accept this as a TMS equivilant and go from there....from my experience the 'cure'for TMS/somatisation and chronic physical anxiety are one and the same so this avenue could well be productive for you. |
 |
|
|
Peg
USA
284 Posts |
Posted - 04/29/2010 : 05:18:08
|
Hi there. I'm sorry to hear that you are still struggling with these symptoms. I remember your initial posts and at that time I suggested that you might have an allergy to pets (? cats). I know of people with that type of allergic symptom. I assume you have determined that it is not an allergy. You certainly have had a thorough work up and have been cleared of a serious medical condition.
I think pan's response was excellent and I'm not sure how much I can add to it. If I were you, I would print that response out and read it again and again. I'll give you my observations in hopes that they will be of help.
I have been where you are and understand, but with the benefit of 10 years of TMS and 10 years of recovery, certain things stand out about your post and I think they are why you are still symptomatic.
>"I did the panic thing"----Fuel for TMS
>"tested positive for arsenic", "herpes neuralgia"----while these turned out to be incorrect diagnoses, they would be frightening to hear----The Nocebo Effect
>"this set of symptoms is SO incredibly bizarre"----This is because you weren't falling for the other symptoms any more. Your strong reaction is fueling TMS (the reason you needed a more convincing symptom is in your life, not in your body)
>"once I got the TMS diagnosis, it was SO much easier to ignore and move on from"----If you need to hear the TMS diagnosis from a DR. then why not see one of them. Although with your long history of TMS and other strange symptoms (back pain, sciatica, TMJ, phantom smells, twitching, etc.), I think you can trust your instinct which is telling you that this is TMS. Besides, you have had a thorough work up.
>"oh my gosh, it's my face again"---This reaction is what is perpetuating your symptom IMHO
>"feeling that this is going to go on forever."----This is called catastrophic thinking
Think about it. A person who is not a worrier like us TMSrs, has a weird symptom and you know what they think? No of course you don't and neither do I, because we are TMSrs and we only know the scary thoughts that we think (what if it gets worse?, what if it never goes away?, what if I have cancer?, what if I die?, what if , what if...).
Well, I have asked non TMSrs about how they react to weird or new symptoms and they think things like; " that's weird, I'm sure it's no big deal", or, "I've been checked out and nothing serious was found, so I'm fine", or, "Boy, my nerves can sure cause strange symptoms" (chuckle), or, "that's a new one" (person moves on with their life, does something fun, watches a funny movie, goes out to meet a friend for lunch or does whatever they were going to do).
So, you've done a thorough job posting about your symptoms. Are you writing about what's going on in your personal life? You don't have to write here on the forum, but there is a reason that your psyche is upping the ante and creating more convincing symptoms. Or, perhaps your life stresses are just run of the mill and your symptoms are persisting just because of your fear of them. Remember, what we resist, persists.
In my opinion, in order to allow the symptoms to resolve, you will need to accept them as harmless and as pan says, possibly "a somatic response to stress and anxiety". Writing to uncover what is bothering you emotionally and dealing with those things. Changing what needs to be changed and accepting what you cannot change. Taking care of your needs, by balancing responsibilities and fun. Finding things that bring you joy and regularly engaging in those activities.
You are insightful and strong, you have dealt with TMS for years. You are a TMS expert, through your successes in the past. You can do this!
Best,
Peg
In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual. Galileo Galilei |
|
|
| |
Topic |
|
|
|
help with neurological symptoms
