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disease that effects GI but then Nervous System?

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Old 09-01-2005, 11:30 AM   #1
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lemoneko HB User
Exclamation disease that effects GI but then Nervous System?


I've actually posted here before (well, not this thread specifically) and the people here have been really helpful. Back when the person in question's symptoms were pertaining only to his GI tract, they had suggested diseases such as IBS, IBDs, Whipples, but tests have all come back negative for those, and his symptoms have now progressed into neurological ones. I'm posting this here again because the GP he is seeing believes it could be an autoimmune disease or a type of a neurological disease, but she really has no idea. I'm hoping that maybe someone, in their experience, might have read something else like this and could point us in the right direction.

I'm going to copy and paste a list of symptoms we typed up a few days ago to give to his doctor, and then a short description on what has been happening recently with his speech. These will be in separate colours. (They're long, one is three pages in word and the other is half a page, it goes into details.)

Abdominal Pain - in the centre, constant but usually worse in the morning and night. Flares with sharp, stabbing pains. The pain is becoming gradually worse: buscopan has stopped working (was on two pills, starting increasing it to three and then to four. Stopped with the buscopan when the four dosage didnít work). Dilaudid was started a few weeks ago: one pill was sufficient to numb the pain but two pills must now be used. Taken on average 3 times a day, sometimes less. The two pills work longer to numb the pain than the one pill does. Abdominal pain has been since March.

Hot/Cold Flashes - one minute I will be sweating and then the next minute I will be cold. Then, this is reversed within minutes or seconds. This happens mostly at night but occasionally happens during the day. It happens every night. The temperature is constant in the house: the other members living here do not undergo these same flashes. These flashes started happening about two weeks ago. These also occur while I am outside.

Joint pain - arthritic joint pain: by this, I mean a dull ache that happens at my elbow, shoulders, knees and hips. This started happening about five months ago and occurs at irregular intervals. It hurts to walk and stuff, but it lasts around ten minutes but goes away so I never take anything for it.

Weight Loss - 40lbs although I eat well-balanced meals, and my mum and Michelleís mum do cook sweets (cookies, cupcakes, cheesecake) in efforts to fatten me up.

Itchiness - all around, moves around almost like shocks: moves around to different points of my body within second of each other. Regular allergy medicines do not work against it. It started happening about a week ago. There is no evidence of a rash where the itchiness has been.

Eye problems - stuff (inanimate objects seem more 3D) jumping out and pain (stabbing) behind eyeballs. My night vision is not what it used to be, the same amount of light that I used to be able to see by I cannot distinguish objects such as a suitcase and a hair band because they were both black, the mellowed into one. At times my vision will go blurry and it will take a few seconds before it returns into focus.

Coordination - hard to do fine movements such as painting a model airplane which I was able to do prior this, jewellery work on that ring I did for Michelle, etc.

Balance - trouble at times. When it is dark out, walking in a straight line would be difficult, and I resemble some drunkard stumbling down the hallway. This lack of balance has been going on for about two-three months.

Tingling in extremities - tingling sensation in the fingers and toes. When one arm is higher than the other, it feels as though one is heavier and the blood is rushing from the heavier one to the lighter one. But this doesnít happen all the time. My right arm has shooting pains, feels as though itís electricity, and has been happening only recently. Numbness has been occurring in my toes.

Blisters on hands and feet - they are returning. They weep a clear fluid.

Fatigued - feels as though Iím constantly trying to catch my breath. I could sleep for 18 hours a day if Michelle let me, but then I wouldnĎt eat anything and she doesnít think that is good. On most days, I go to sleep around 10pm, wake up around 12pm and take a nap in the afternoon for about 3-4 hours. I eat lunch and supper, medium sized meals for a young man. On days where I have to go somewhere, I go back to sleep or go to sleep earlier that night, around 7pm. I donít have a stamina, Iím always run-down and feel like I just ran 100 miles.

Loss of appetite - I ate more when I was healthy, but I do eat. Food has no taste for me anymore, the foods which I loved to eat I donít want to eat because they all taste bad and nothing really appeals to me anymore. I eat medium-sized meals for a guy, more than the young woman and mum in my house though. I am drinking a meal-replacement drink in the morning now in hopes of gaining weight, or Michelleís instant carnation breakfasts which have similar nutritional value but that has not helped. I have tried to gain weight but I keep losing it!

Tremors/ Twitch - Iíve been noticing in the past week (although they could have been happening longer than that) that Iíll be shaking or Iíll have twitches throughout my body (sudden jerks).

Low b12 - Unknown if this is a symptom of, or a cause of the disease. (Pernicious Anaemia)

Hearing loss and ringing in ears - periodical

Chest pain - sharp stabbing pains in the left side, upper chest of the chest only. Comes for 5 minutes to an hour before leaving. On Friday (Aug 26) Michelle and I had to ran for the bus and immediately I felt chest pain. Chest pain started happening after I lost the initial 40lbs, around four months ago.

Bad breath - bad breath even after I brush my teeth or after I eat.

Easily confused and irritated, and disorientated at times.

Memory-loss - Irritable and gets frustrated when there is something he cannot remember. Short-term memory has gone down, cannot remember the events of three days ago, cannot remember to tell the doctors about all his symptoms.

Urinary Tract - hard to initiate urination. Once stopped, flush and everything, about five minutes later, a few leaks will happen sometimes. This started happening about two weeks ago.

Bowel Movements - Dense, like rocks. Mucous present, sometimes come out odd colours, sorta greenish. A bit hard to pass but I have a bowel movement every day. All the stools sink to the bottom. This started happening in the last couple weeks, maybe as far back as a month.

Coughing - Iím noticing thereís been a lot of mucous in my throat, and Michelleís mum has noticed Iíve been coughing for months.

Other weird feelings that donít have a category - I get these weird feelings a lot that I just canít put into a words. Non-emotions, feelings. Like sensory-overload. These have been becomes worse, very very worse lately. Last night, was the worst it has been: I was nauseated, I had a major migraine, my eyes hurt, it felt as though I had ran a marathon, I was sweating--my blanket was soaked in sweat. I was dizzy, shaking, having hot/cold flashes within second of each other, or half by body was cold and the other half was hot, and my chest hurt. I had the phone next to me in case that I had to call 911 or my mum and go to the ER. In fact, I would have called 911 if I had the money, but I didnít want to sit in the ER for hours on end so I didnít call my mum. This was the worse case of these fits Iíve had, but they are constantly escalating and Iím sure the next one will be worse than this one, because this is the way itís been going. In short, I was going through absolute hell!

--continued in a second post--

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Old 09-01-2005, 11:32 AM   #2
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lemoneko HB User
Re: disease that effects GI but then Nervous System?

Episode I -- August 30, 2:00pm - 4:00pm
Episode II -- August 31, 2:30am -- sleep
Episode III -- August 31, 12:10pm -- 4:00pm

A three-four second flash of fuzziness in my vision in both eyes Everything in my sight goes blurry: the blurriness is worse than not looking through my glasses, but I can still function.
When my vision clear up, I then have trouble speaking. Itís like a light switch. I can think of the words, I can comprehend them, I just canít get them out. It takes an extreme amount of energy to speak.
My balance becomes less steady, I seem to shake more. I have problems with hot and cold (shivering, but I was taking off my jacket because I was hot), dizziness (feels like Iím on a ship and itís rocking--nothing feels stable), there is a pain behind my eyes that feels like pins, though itís not extreme, nausea only towards the end.
It ends the way it starts: my vision goes blurry and the nausea becomes worse. When my vision clears up, I can speak again but the nausea is still there. The nausea goes away if I take medication for it, or after an hour or two.

Each episode is pretty much the same, there are only varying differences such as: on the second incident, I saw flashes of light. These werenít something I could reach out and touch, they were like strobe lights 10Hz. On the second incident, I also had the sweats which have come to be a nightly companion, but when we checked my temperature it was below normal. The third episode was worse than the others: I felt it was harder to speak the words although my mind knew perfectly well what it wanted to say. From the first time to the third time, my balance was worse: I could walk straight through the mall the first time but on the third time I felt like I was going to fall over. The headache that was behind my eyes was not as bad this third time as it was the other two times though.

Factors that it cannot be caused by because they are not common factors:
Side effect of the dilaudid: I did not take the dilaudid the II and III times
Stress: only the first time could I be considered under stress: I was taking about my mother and how I feel about how reluctant she is to believe me. There were no stress factors for II and III.

We've seen GI specialists only because the symptoms suggested a GI disease. His GP has tried to get him into the hospital, but only a specialist can, and the one we're seeing now won't since he doesn't have a staff there. (Oh, the only reason we're seeing that GI specialist is because he works in my aunt's office and he's doing her a favour). I think he needs to see an Immunologist or a Rheumologist, but that could take 3-4 months! A lot of his symptoms suggest Pernicious Anaemia, but the company isn't making the drug anymore which tests for it. Lupus has been suggested, I suggested MS, but the GP shot it down without testing for it. I know Lupus and MS present differently in everyone, so it's hard to say whether or not it could be that.

The tests that have been performed are:
CT scan on abdomen and head: only the abdomen had the dye injected into him, both came back normal.
Blood work and urinalysis
Gastroscopy, Colonoscopy with biopsies
Small Intestine biopsies
barium follow through
barium X-ray

He hasn't had an MRI yet, which I think would be beneficial, and a white blood cell scan is booked for Sept 8. They're also talking about doing an abdomen angiogram. He's had blood work for Lupus screening, but that's still getting processed. Does anyone know how effective CTs and Lupus bloodwork are?

Thank you very much for reading, I appreciate any type of help you can offer.

Old 09-02-2005, 05:57 AM   #3
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Re: disease that effects GI but then Nervous System?

this all could actually be from some sort of damage to even the sympathetic nervous system.Mine was damaged due to a surgery and i am experiencing many many of the the same symptoms listed in your post because of it.the SNS governs alot of areas and body systems.I am constantly being suprised with yet another freaky wierd neuro thing just showing up.i really do think that an MRI done on the full spine with emphasis on the C and upper T spine would be your best next step here, really.this could possibly uncover some sort of issues going on in the spine or surrounding area that is actually affecting the many many nerves that run through there.espescially if the problem is running through the lower c and upper T spine area.This is kind of a "junction" area of where many important spinal and crainial nerves meet and loop and go on to other areas.I really do think that at the very least an MRI needs to be done in order to really look at this possibility.
there is also a possibility that this person actually has more than one condition going on at the same time.Just because all of these symptoms are going on at the same exact time,does not mean that they are all related to just one particular cause.I hope you can get some good answers here soon.please keep me posted.Marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 09-04-2005, 11:10 AM   #4
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lemoneko HB User
Re: disease that effects GI but then Nervous System?

Thank you for the reply.

Is there a test that could be performed to determine if it is damage to the SNS? (He hasn't had anything done that would be damaging though--no contact with poisons or no surgeries). I'm sure there are some dieases that wreck havoc on the SNS though? We'll talk to the GP about getting him booked in for an MRI as soon as possible

You're right--there could be two conditions. Pretty much all the tests keep coming back negative or normal and the doctors here are indicating that they will make the cause of everything depression or anxiety if they can't find a cause. ^^;;

He had a stress test the other day, and the cardiologist said there was nothing wrong with his heart, although he does have chest pain (probably pain in the muscle or something, I remember the GP saying) and the cardiologist suggested pernicious anaemia.

He hasn't had another one of those stuttering episodes in a few days. The last two times he's had one though, I got him to lay down and they went away quicker than before (30 minutes rather than hours).

Thanks again for the reply.

Old 11-26-2007, 04:57 PM   #5
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Location: sonora california usa
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flowerfloosey HB User
Re: disease that effects GI but then Nervous System?

All of these symptoms sound like mine. I have been diagnosed with probable ms. they did a spinal tap that was positive for ms, but they have found no leisons anywhere. I have been going thru this for going on 4 years. you might go to the sight brain talk and see what all of them have to say about symptoms.
I am not a doctor..only one who has been to 5 neuros among lots of other docs trying to find out what is the prob.
Good Luck and God Bless!

Old 01-22-2008, 09:20 AM   #6
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hollymbk HB User
Re: disease that effects GI but then Nervous System?

I have many of these same symptoms, I was diagnosed with many, many food and pollen allergies... I have met several people with multiple food allergies who have found out they also have MS.

If you look up Celiac disease, which is Gluten intolerance, you might find some similarities. weight loss...B 12 deficiency... I know numbness and tingling can be included in that. Celiacs quite possibly may have a bloated abdomen also. I think that when you have food allergies, your intestines can become inflamed and become less able to absorb nutrients so your nervous system is affected eventually. So I would definately go get food allergy testing done, they have scratch tests that an allergist/immunoligist performs. They also have blood tests which can be requested by a naturopathic doctor. Blood is drawn and sent to a lab like Great smoky laboratory or great plains laboratory, they can do the tests on your blood and test for around 300+ delayed food reactions. There is a controversy about which tests are more accurate. The tests may come up with different results, each finding foods the other can't. I had the scratch tests, my nephew had the blood tests... not sure which is better.

Many people have food allergies and don't know it because the symptoms are very illusive. One person may just get brain fog. One may get headaches. Others may have diarrhea. One may just have joint pain. One may get throat swelling, rashes, eczema, or hives, etc.... It is very hard to figure out and also the reactions may happen inconsistently. When a person has multiple allergies, it is absolutely maddening because you feel so sick and have no idea what it was. Sometimes it feels like food poisoning when you accidentally eat a plate full of different things that are all allergens. Feels like you will die. Really painful cramps, your whole system flushes, you tend to breathe hard and your heart goes really fast. I have to drink about 32oz of water before I feel better.

Last edited by moderator2; 01-22-2008 at 09:38 AM. Reason: posted commercial website

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