Any opinions on my undiagnosed bizzarre illness??

[Jonnnyuk]

I have been chronically ill for over 20 years with a terrible nervous system/autoimmune illness

Symptoms started at age 18 while doing a lot of drugs, though I was weak since birth

I am now 37 - largely housebound

Symptoms include:

Exercise intolerance

severe allergy-like reactions (including uncontrollable tachycardia and arrhythmia)if exposed to anything strong,like coffee, sugar or alcohol,or chemicals in air or on skin



Regular flu-like episodes of aching, swollen glands, shaking etc.

Type 2 diabetic (insulin resistance)

Strange numb ticklish electrical tingling going in waves over my scalp, and also down through the body and legs.

Sometimes sensations build up in head to point of severe headache

[CINDU]

I AM A 33 YR OLD FEMALE W/HISTORY OF STRANGE MEDICAL PROBLEMS.
THESE INCLUDE-IRRITABLE BOWEL SYNDROM,INSONMIA-SLEEP DISTURBANCES, SEIZURES, SEVERE MENSTRAL PERIODS-PMS-SEVERE BLEEDING,MIGRAINE-TENSION HEADACHES, MUSCLE PAIN BURNING STIFFNESS WEAKNESS-NUMBNESS TINGLING-PAIN AT THE TOUCH OF MY SKIN.DEPRESSION-SOMETIMES VERY SEVERE-ANXIETY,LACK OF ENERGY...
RECENTLY-7-01 MY LEFT LEG SWELLED FROM MY HIP TO FOOT-VERY OBVIOUS TO MYSELF-NOT ALWAYS OTHERS PAIN FROM BUTTOCKS-KNEE.. I THOUGHT I HAD LEUKEMIA RECENTLY. HOWEVER AFTER SEEING MY PRIMARY TODAY SHE SUGGESTED....... FIBOMYLAGIA.... AFTER INVESTIGATING ALL NIGHT ON THE INTERNET ***** I REALLY THINK SHE IS RIGHT. MY GOD. I HAVE BEEN FEELING LIKE A CHRONIC COMPLAINER W/NO ANSWERS.
I HAVE HEARD..M.S.-LUPUS.-TUMOR-LEUKEMIA-ANY MANY MANY OTHER SUGGESTIONS.. I HAVE ALL THE SYMPTOMS ALL BUT 1..OF FIBROMYLAGIA
ALL TENDER POINTS. I SUGGEST YPU INVESTIGATE THIS AVENUE...
IT HAS SO FAR BEEN A REAL RELIEF TO HAVE AN ANSWER THAT MAY FIT.

THE BEST OF LUCK TO YOU--TRY GOOGLE,ON THE INTERNET..
HOPE I HAVE BEEN OF SOME HELP TO YOU..

[queeniee2002]

Hi. I have inflammation of the nerves or CNS, so I understand where you are coming from totally. Mine was all caused by an Adverse Drug Reaction to Macrobid (which can cause neuropathies and such) and possibly Trovan (a quinolone antibiotic). The quinolones include: Cipro, Tequin, Floxin, Levaquin,,,you can check out the Quinolone Adverse Reaction site. I was just wondering if you ever took a strange drug for an infection which may have set off your nervous system? Thanks. Sharon

[jujubelly]

What about Fibromyalgia? The main thing that strikes me in what you are saying is your perception of enviromental stimuli as pain, this is common in Fibromyalgia and chemical sensisitivy. It'd be interesting to see if drugs that interfere in pain perception would help.

Good luck

J

[Jonnnyuk]

I missed out some important info in my question, because of the limit on words. I will try to add a bit more here in case it means anything to anyone.


My neuropathy is not of the peripheral kind, that might be caused by MS, or trapped nerves or whatever.

It affects the whole nervous system and comes and goes.

Therefore I don't think it can be to do with mechanical damage to any particular nerve (even a very central one).

It has been suggested to me that it might be related to brain damage of some kind - perhaps overactive neural pathways - too much "volume" on the nervous system.

Or perhaps some kind of total inflammation of the nerves.

One specialist told me that I had autonomic nervous system dysfunction because when I change posture (eg standing up) my heart rate and blood pressure go crazy, like my nervous system can't cope with the quick change in posture.



I suffer a lot from my nervous system failing to adapt to environmental or postural changes.

Some days even the phone ringing or a dog barking can shock me in a painful way.

I actually had a terrible forceps birth, and was covered in bruises - my head was totally battered. The doctors thought I was brain damaged, and as a baby I would jump at the slightest noise.


Maybe I have similar damage to my nervous system as with shell shock?

Also, both my parents suffered very bad allergies at various times, so there is obvously potential for a big genetic component, but neither they, or anyone else I have ever heard of, has the kind of hypersensitive nervous system I do.

All my family have strong nervous systems.

I have given up seeking a label for my overall condition, as it is very complicated and unique (in the same way that the problems of ethiopia can be labelled as "famine, war, drought, corruption" etc., depending on which specialist you talk to, but the pattern of dysfunction is actually unique, and will never be the same as any other country.


But I AM interested in a diagnosis for this hypersensitivity to noise/squeaking, and the strange electrical tingling that covers my whole body, not just one part (often in response to a shock like noise, especially in cold weather or if I am flu-ish). I feel that there may be a specific answer for this symptom - whether hormonal (its worse after sex), or some imbalance of neurotransmitters or brain chemicals.


There is a lot of stuff I get that appears similar to CFIDS/ME or whatever, but many differences too.

I don't get tired - I have energy all day. But if I exercise too much my heart rhythm becomes unstable and my joints start to breakdown.

I was tested for Lupus years ago, but it came up negative.

[MissySelah]

HI I dont know how this board works very well so if anyone replies to me, please email your response to ***@**** also or I will proly never see it :)! Thanks!! I read this person's post that is posted below and it reminded me some of my own illness and wanted to get in touch with this person to talk to them more about their illness. I have CFIDS and wonder if that is what Jonnyuk has.  IF anyone knows his email, please forward it to me or this to him. THanks ;). GOD bless from MELisa SChmeets in USA

Q jonnnyuk
(01-Feb-02) . I have been chronically ill for over 20 years with a terrible nervous system/autoimmune illness

Symptoms started at age 18 while doing a lot of drugs, though I was weak since birth

I am now 37 - largely housebound

Symptoms include:

Exercise intolerance

severe allergy-like reactions (including uncontrollable tachycardia and arrhythmia)if exposed to anything strong,like coffee, sugar or alcohol,or chemicals in air or on skin



Regular flu-like episodes of aching, swollen glands, shaking etc.

Type 2 diabetic (insulin resistance)

Strange numb ticklish electrical tingling going in waves over my scalp, and also down through the body and legs.

Sometimes sensations build up in head to point of severe headache

[CCF-Neuro-M.D.-JT]

Overall, your symptoms sound like general deconditioning and could be possibly related to the "autoimmune illness." It would be helpful to determine exactly what autoimmune disease you actually have with laboratory and clinical testing.  A neurological disease that would explain all of your symptoms does not come to mind, but many autoimmune diseases such as LUpus do have neurological manifestations such as peripheral neuropathies. Diabetes can also cause peripheral neuropathies, prickly, tingling feelings in you limbs. Talk to your primary care doc about some diagnostic lab studies to help you figure what what's going on with you. Start with routine studies such as blood counts to look for anemia and electrolytes. If the tingling/electric shock like sensations progress in your limbs, consider seeing a neruologist and perhaps get an EMG. GOod luck.