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Old 06-06-2003, 12:51 AM   #1
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14allall41 HB User
Question HELP ME PUT A NAME TO MY ILLNESS

I am posting this on several of the Illnesses Boards on this website looking for an answer to what is said to have no answer by several Therapist, Medical Doctors, Psychologists and Psychiatrists. I have had tests for everything imaginable all showing nothing causing my symptoms. My sleep analyst showed a little anxiety, my psychological evaluation shows depression but with these daily symptoms that is justifiable and my MRI examined by a Neurologist is clear of the Head and neck area. I have had thyroid, lupus, etc. And a lot of lab and stool tests. These are new tests done after an episode of going off of Xanax levels to fast being lowered by fast reduction of Serzone and having been in a Coma state of Hallucinations that I thought I was awake and walking around sick the whole time for 8 days while I never left the bed. I had been sick with throat disorders and fevers of 104 plus and stomach problems for approximately twenty-three years for which tests drew no conclusion of diagnosis. I was strickened with severe panic attacks for the last seven years and became completely disabled the last two years of the seven. I had my first panic attack 20 years ago, but did not know what it was and being a Manager of a large Company said nothing to anyone, not even my wife. After 13 months of continuos weekly Therapy and bi-weekly Psychiatrist session by a County Mental Health Clinic, I was found to be totally non-delusional and diagnosed as cause by PTSD for the panic attacks and mild depression. I am currently with a very fine team of Doctors at a VA hospital and they keep wanting to put me on an anti-psychotic drug. Not because their test show that I am bipolar or manic, just to deaden the pain and suffering that I go through everyday. I do not want to do this because thus far I am still clear of mind and basically have all of my mental skills that I have learned. I actually have learned a lot more in the last couple of years constantly studying panic attacks, seizures, bipolar, depression, drugs and basically anything concerning mental and physical health that may give me an answer for all of my symptoms. My answer from all of my doctors of all fields has been that there is no one that knows enough about the brain to diagnosis my illness that shows in no test, because no one knows enough about the brain to do it. They stated in cases that they have seen like mine, the patient has gone blind, become paralyzed or worse and that I should try to stay calm. I am past the point of panicking and I do not require stress or anxiety to have daily symptoms or major attacks. They come when they feel like it, I have no control and I just lay down and let them pass. Maybe someone out there can shed some light on this. I am not afraid to hear the worse, so donít hold back, I just would like an answer and hopefully a name for what I have. Below is a list of my symptoms:

Everyday !!!!!!!
Dull or sharp pains mainly deep in the left side of my head.
Pains in my hips, calves and primarily in my ankles and feet.
Muscle spasms in my chest, abdomen, shoulders, neck, arms legs and feet.
Sharp pains in various places on my body, sometime in two different specific areas at the same time that seem to relate to each other.
Sharp pains as though being stuck by a needle and when I push lightly on the area I get a pain in the back of my head.
Stomach bloating and a strapping feeling over the abdomen and lower chest area.
Pains in my left arm muscles and sore to the touch.
Shoulder and back pains
When bending over upper vertebrae from top of my back to back of head at the neck feel and sound as though they are spreading apart. Lower vertebrae do the same when bending over also.
Joints in hips sometime when turning seem as though they are sliding in the socket and I get sharp pains.
When lifting sometimes as little as a few pounds, elbows and shoulders fell like they are going to pull out of socket. Sometimes a coffee cup is to heavy to hold.
Numb feeling in face, lips, arms, basically anywhere is possible. Electrical tingling sensations also
Body temperature runs a couple of degrees lower then the first 40 years of my life.
Hot flushes and cold sweats, but always tend to be colder then others.
Heat, or hot shower water tends to make the left side of my headache.
Constipation, abdominal spasms, other times going 10 plus times a day
Dents have begun appearing more prominent such as at the top of my socks where the elastic has been and there are lines where my glasses arms against my face are at least three inches long and 1/8Ē deep or more.
I wear my glasses about 3 / 4 of the day and not at night and they are not to tight.
Weakness, fatigue and the need to nap. Dizzy if I hold my breath for 5 seconds or more.
Sexual side effect, I can go for a long time now, I donít know if that one is good or bad.

During attacks:
Chest and body cramps diagnosed as seizures
Electrical shocks from head to toe
Warm body flushes usually starting in the lower abdomen area, spread over entire body and heating up to the point that I actually feel as though I am engulfed in flames and burning alive. Just when I think I will pass out or canít stand it anymore, my body cools and like a roller coaster it starts up again.
Feelings of fluids being released in the back of my head and other strange sensations.

Drugs:
Every 6 hours: 1mg xanax and 300mg neurontin
Morning: 20mg celexa and an aspirin

There is more but it is hard to remember them all and there is always something new developing. The doctors say my brain is playing tricks on me and there is no cure or diagnosis. Any help will do and I am sorry this is so long. Thank you very much for reading this.

A Friend without a name for his illness

 
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Old 06-07-2003, 03:11 PM   #2
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Location: Jersey City, NJ
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zip2play HB User
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Gosh,
I'm sad reading this. I wish I had a good suggestion.

It seems almost certainly psychosomatic but of course that doesn't make the symptoms less painful.

If I had to suggest something, I think it would be to look for some "meditative" healing....some relaxational therapy.
Maybe yoga might help.

Is your career hateful to you, is your marriage good? Are you religious- maybe a "guru" in your faith could help.

This isn't the way I normally think, but you seem to have a breakdown in nearly all body funtions....so it's probably not disease realted.

Have you ever done anything like group therapy?...or, god forbid, a shrink (wiping mouth)!

 
Old 06-07-2003, 03:29 PM   #3
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14allall41 HB User
Smile

Religous,yes and married to great woman for 28 years. Relaxation therapy, was a martial arts instructor. I have no job, totally disabled and I have seen over 10 shrinks. Just don't know the answer but am looking hard at the drugs being the problem. Only one way to find out and it is a long hard road. Thanks for the post and concern. Your Board Friend

 
Old 06-07-2003, 07:34 PM   #4
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
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Hi,

I suggest you go to the fibromyalgia board and read "FM Symptoms" written by tolern. I'm no expert, but some of your symptoms sound like some on that list. See what you think. I was astonished at all that can be caused by fibromyalgia.

I wish you well. Peace - Barbara
__________________
Betty

 
Old 06-08-2003, 12:40 PM   #5
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SusanM HB User
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You mention a lot of symptoms. Sometimes when we are not feeling well, and have not felt well in a long time we start to associate all kinds of things to our illness-diagnosed or not. Maybe you have a few different medical conditions, medication side effects, and are also focusing on your body too much because of depression or anxiety. Medications can cause joint pain, neuropathy (can be experienced as flushing sensation) etc.

People can also carry multiple psychiatric diagnoses. PTSD sometimes presents as panic attacts, but they are usually of more of a flash back kind of experience. On the other hand one can have both panic attacks, and PTSD.

If your doctor wants you to take antipsychotic drugs, someone must think you are experiencing psychotic symptoms or are in a residual stage of a psychotic disorder. You did mention a previous psychotic episode. You did not mention the cause of your psychosis.

County mental health professionals tend to be underpaid, and less experienced than other mental health professionals. Are you getting treatment from a really qualified professional?

You might want to get psychological testing to help sort out the mental health stuff. It would help with an accurate diagnosis. A psychologist would administer these tests. Make sure you are being followed by a good doctor. Best Wishes.

 
Old 06-08-2003, 10:16 PM   #6
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14allall41 HB User
Wink

Dear Susan and Barbara,
Thank you for your concern and I will take a look at the F board Barbara, someone with F pushed on different parts of my body once and said I had it. I will check that out.

Susan I am with the VA hospital now, not a county mental health clinic. I have a whole team of MDs, Therapist, Psychologist, Psychiatrist for talking with and ones that are the experts in the drug administration only. They are the one's that are trying to put me on the anti-psycotics. I still don't agree, but when you have been involved in so many things as I have, the hardest thing to except is that you are not well without the drugs. So many people seem so right on with their posts it is amazing. It seems like there are so many possible answers. In the end I guess I will find out that the Psychiatrists
will win out in this.

Thank you both again, a God bless everyone

 
Old 06-14-2003, 12:47 PM   #7
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xtian1 HB User
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I have had panic attacks or "spells" with the same sympoms for 7yrs. I will be sitting watching TV (or doing anything) and suddenly won't feel right. I get a warm sensation in my chest that spreads across my chest and into my neck, I go instantly pale, SOB, tachycardia, blood pressure goes up, hands sweat, basically feel like I'm about to explode. It usually lasts for 10mins and then subsides with shaking and cold chills, and I will feel wiped out afterwards. Sometimes it will come in waves of 2-3 attacks. Other times it will be so bad I will call 911 because I think I'm having a heart attack (been to the ER 50 times for this). I also have extreme fatigue, sore parotid glands that come and go, flu-like symptoms, electrical shocks throughout my body, squeezing pains in my head, terrible GI problems (reflux, bloating etc..) Nauseas spells where I instantly feel like I'm going to pass out etc...I have seen over 20 specialists (37yr old male, other wise healthy - 6ft, 160pnds) with very few answers.They did every cardiac test in the book, including an angiogram, all negative. Also every GI test, negative except recently found delayed gastric emptying and bacterial overgrowth of the small intestine (hydrogen test). Also I recently saw a Rheumotologist who did an ANA test which was positive (1:80/Speckled pattern). He says i might have an auto-immune disease or infectious process and we are looking into that. Otherwise have had every blood test in the book (HIV, pheocromocytoma etc..) all negative, though postive epstein barr (old infection) and positive CMV (old infection). I believe you should get an infectious disease workup and an auto-immune disease workup if you haven't already. These diseases have many panic like symptoms. I encourage you to also see a naturopathic Dr. and be tested for heavy metal poisoning (i.e. mercury, etc..) as it is often the culprit. You would be surprised how many people suffer needlessly from these symptoms because of heavy metal poisoning. Most auto-immune disorders are caused by this. The mercury builds up in the organs and needs to be detoxified from the body. this is not hogwash and is well documented. Do you have any amalgam fillings in your teeth?? Please look into this. At least get the Mercury test (which doesn't always show how bad it really is as mercury hides in the organs). Also, I was taking clonazepam for anxiety for a long time and it can be very detrimental to your health. Xanax is worse. The withdrawal symptoms often bring on attacks and mimic them. I'd advise you to wean off the xanax and maybe increase the celexa a little, or try Lexapro which is an improved version of celexa. the anti-depressants are better for the long term and not as addictive. I'm not a doctor, but have done alot of research in this area. Please, I encourage you to consider seeing a good naturopathic Dr. The medical Docs only treat the symptoms and often that is not at all sufficient for this disorder, you must find the root cause and trea that. Also continue therapy witha psychologist who doesn't just throw drugs at you, as I know how personally how crippling this disorder can be.

I wish you well,

Chris

 
Old 08-10-2003, 02:58 PM   #8
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donnamama7 HB User
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I am not a doctor, so I can't claim to know anything really except what works for me. I have a lot of the same symptoms as you and for the most part, the ones you wouldn't hear other people complain about--the strange ones.

I have the fluid sound and feeling in my head/spinal cord, electrical feelings throughout my body, numbness, spinal and hip joints grinding and coming apart, etc. I would say I have maybe 80-90% of your symptoms. I'll tell you what I have found over the years and how I deal with it.

I have Lupus/FM/Sjogren's/IBS/TLEpilepsy/Depression and a few other bonus problems, including one it sounds like you are suffering from, some Edema? I have Edema in just the left side of my body though, doctor can't explain why. And one more thing is I have something going on in the brain that is causing some sort of disturbance in the electrical system of my body/neves. Things bother me that don't bother others and I feel hot/cold/buzzing/needles/twitches/deadness...etc. I think I know what you are talking about though, somewhat.

A lot of my problems overlap the other or are a result of one of the other issues. I can take medications to control some of the symptoms I don't feel I can live with anymore. But sometimes, I have to balance that out with the new side effects I may suffer. My siblings have the same issues and we tend to be effected by the same things about the same time--we rarely see each other and always find when catching up we had the same illnesses about the same time. Strange.

Anyway, my point is, I can't seem to do much about what's going on, stress makes all of the problems worse. The way I deal is a balance of medication, rest, exercise, diet, pain management, a little suffering, and a lot of acceptance. I had to tell myself not everyone is set up the same way and I am just more sensitve--nervewise that is--than some others. My approach doesn't work for everyone, but it's one that works for me. I just wish I would have figured it out sooner, cause I thought I was going crazy for years! I am happier now, not all better, but I can live with it. Hope you find something to help you soon.

D

 
Old 10-17-2007, 12:02 AM   #9
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lanzero71 HB User
Re: HELP ME PUT A NAME TO MY ILLNESS

I been thru a lot of the symptoms you are describing and been made all test including MRI ,blood test,etc. You seem to have a compound problem and many of the replys before have very good advice.If you have tried all coventional medicine I would recommend you a natural medicine doctor.Also I would recommend you to have a look at candida symptoms in the internet. You would be surprised that a overgrown candida infection may cause many of the symptoms you are having and many medical doctors wont accept that a candida infection can cause that.See the reviews and testimonies about candida and you will find usefull information. You should start from 0 and try to stop the medicines for a while because if you look into the side effects of the medicines you are using you will find that they can at the long run exacerbate your condition. Try to clean up your system first with a natural colon cleanser and a detoxifying system(there are a lot of good ones),that can take the accumulated toxins and metals from your body.Eat an organic fruit and veggies diet for at least 3 months with low fat high protein quality meats or fish.Try a candida cleansing product also for 3 months and then see if your symptoms get better.Although Im still in the middle of the process its been helping me. What works for some people doesnt always works for others so you have to try what works for you. Sadly ,doctors can only prescribe drugs or surgery and sometimes thats not enough. Check also any inner psicological/spiritual conflict thats unresolved in you, even from your childhood. Forgive those who you need to and say what you have to say to those persons that you dont dare to speak your mind to. All this take time but it also took time to get into our bodies so a complete cleansing and conflict resolution could take some months or even years. Its a way of our body/mind/spirit to tell us to stop and think that otherwise we wont do. Hope this helps in anyway to you. Take care and wish you heath.

 
Old 10-17-2007, 07:41 AM   #10
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realisticchic HB User
Re: HELP ME PUT A NAME TO MY ILLNESS

First, let me say I admire your courage to seek an answer in the face of such adversity, and I admire the fact that you have an open mind.
Have you been tested for MS? It is my understanding that there are different kinds of MS, and some of your symptoms could be explained by this disease. As for the panic attacks, have you read up on Agoraphobia? It is linked to some autoimmune conditions. The sensation in your chest, I have read of such a phenomena called and "MS hug". Lyme disease may be something else to read up on. I wish you well in your quest and hope you find some relief soon, take care

 
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