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Cant get a diagnosis, Problems building up.

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Old 09-10-2008, 10:41 PM   #1
Join Date: Sep 2008
Location: UK
Posts: 9
KingOfNothing HB User
Cant get a diagnosis, Problems building up.

Hello My names John for the last 3 years I've had a persistent sensory nerve problems around area's of my body (Head, Right leg ect) I've also been getting a Brain fog type of feeling which won't seem to go away I've had a MRI which came back normal (Brain, Spine) I have also done a Nerve conduction test and EMG which came back that I had sensory nerve problems which ofcause I already knew.
Also did aload of blood tests which was all normal except that I had Iron Anemia. I'm in good shape I don't smoke or drink and I'm only 17 so I'm confused why this is happaning to me.

I live In the UK so I have to wait for tests, I can't just walk In to my doctor and receive multiple tests, Afew other things to note Is It started when I was losing weight and also having strange dizziness (alomst blacking out) when I sat up.

Any advice would be appreciated, It seems to spread so I'm guessing it could be a disease?. Someone I know mentioned Celiac Disease.

PS : I can move my eyes, But I can't feel them (Or the area around). I find It really find to sleep because of this.

Cheers in Advance

Last edited by KingOfNothing; 09-10-2008 at 10:44 PM.

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Old 10-02-2008, 11:10 AM   #2
Join Date: Sep 2008
Location: Sierra Madre, CA, USA
Posts: 3
pricklybarb HB User
Re: Cant get a diagnosis, Problems building up.

Have you investigated diabetes? I found an article that says neuropathy can be the first sign, predating a type 2 diabetes diagnosis by months to years. I hope/fear that I am in that category. T

I was misdiagnosed with Multiple sclerosis, one doc thought I just needed more psych meds, one said it was a sleep disorder and then the best specialist said she didn't know. I respect a doc that is willing to admit that and not just throw on a label.
Even if all the tests for it come back negative....Lyme disease? Have you been in the woods? Found a tick? Been any place where deer mice or deer ticks or especially deer run around. I never found a tick bite, but 11 years ago, I had brain fog, fatigue, neuropathy, weakness, and a whole boatload of weird symptoms that confused doctors.

A year of being really disabled went by until a friend suggested the diagnosis. It took some doing to find a doctor that would even consider Lyme Disease. He put me on a trial run of antibiotics, two at a time. He said if I had it, I would get sick. 3 days after I started them, the fatigue and brain fog crushed me. I felt awful for 2 weeks. I never tested positive, but 6 years on pairs of antibiotics and I got better. L

Lyme disease is a relative to syphillis which is called "the great imitator". One can have lyme and test positive for syphillis sometimes.

The term BRAIN FOG is indicitive of lyme disease. I encourage you to read up on it and you may find yourself there. It is actually a good thing. It is treatable and you can recover. Maybe you can find a doc to give you a trial of antibiotics. Lyme is often a "clinical" diagnosis, a diagnosis made not on positive test results, but on history and symptoms....basically what you tell the doctor and what he observes.

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Old 10-07-2008, 08:12 AM   #3
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Re: Cant get a diagnosis, Problems building up.

just wondering if you have tried getting your iron up to the normal levels at all yet? if so,has it worked yet? in some people,simple iron deficiency can cause a host of ongoing symptoms,some of which you described here. if your iron is still too low,try adding a suppliment(or add more iron rich foods to your diet) and then see how your symptoms are. this could just be part of the problem in and of itself. my hubby regularly gives blood and two seperate times during this past summer,he was too low in his iron to give. they told him to eat things like beans,dark chocolate and raisins for awhile and then come back. the raisins actually worked much better than anything else he tried(he did not want to have to take the suppliments since they can create constipation). the thing is,he was having all kinds of really strange symptms which included vertigo,brain foggyness and tingles in certain nerves. this all went away once his iron was back to normal. just a thought for you.

just where did that EMG show nerve impairment,what areas of your body are affected? did you yourself actually obtain copies of all test results,like the MRIs and read thru them yourself or did you just hear bits and pieces from your doc? believe me,if you were just 'told' things by your doc,espescially if this was any type of actual speacialist,i can almost guarentee you that you were not told everything that was in that report as a finding. for some idiotic reason,most specialists just will not give you every sinlge hard finding in any given MRI report,only what "they feel' is pertinent to the situation at hand,not everything that just simply could possibly 'tell' the whole story about any given condition,you know what i mean?

if you do not yet actually have the reports of ALL testing done on you,you really do NEED to obtain them and go thru them yourself. the thing here is,what any doc actually feels is pertinent depends ALOT upon his or her actual level of knowledge on what YOUR actual conditon really is and what some innocuous finding could actually mean for any given patient,you know what i mean? if they don;t have the level of knowledge and or experience in your situation,they simply would not give that particular finding the credit it deserves. you just really DO need those reports and if you could,simply type out the actual summary at the end of the MRI reports here? it would help me alot to try and help you. if 'something' is actually impeding the nerve flow with regards to your sensory,there has to be a casue or reason at some point along that given nerve. get that EMG report too so we know hat nerve is being affected,K? on any EMG,only the nerves or muscles that lack the normal flow velocity will show as abnormal,so something IS most definitely compromising it along its route.

any info you can provide with regards to any of your reports would really be most helpful right now. 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 08-04-2010, 07:18 AM   #4
Join Date: Aug 2010
Posts: 2
Rbnla HB User
Re: Cant get a diagnosis, Problems building up.

Ask to have your adrenal function tested. That causes blood pressure to drop drastically upon standing.

Old 12-01-2011, 08:46 AM   #5
Join Date: Dec 2011
Location: New England
Posts: 2
NoMoreGluten HB User
Re: Cant get a diagnosis, Problems building up.

PLEASE get tested for celiac disease.

Or, as a test, stop eating all forms of gluten for a week and see if you feel better.

In order to be tested for celiac, you have to continue eating wheat in order for the tests to come out normal.

And remember that some people are Gluten Intolerant, which means they are sensitive to gluten even if they are not a celiac. You can also be allergic to wheat without being a celiac. Celiac is an autoimmune disease.

Also remember there is gluten in everything! Soups, soy sauce, some ice creams, gravy, licorice, some's hidden in everything as it is a cheap thickener.

My advice? Give up gluten for two weeks. Then, if you feel better (you'll know right away) go to a doctor. Begin eating gluten again for testing....and then stop.

Sure fire way to know if gluten is an issue for you..

I was diagnosed with MS more than ten years ago.

In the end, I had a gluten allergy.

What a waste of ten years!

The money, expense, hardship.

Doctors here in the US know very little about gluten allergies.

In Italy, everyone is tested at birth...

It's a shame really.

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