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Neurology (Expert Forum)
2 years of strange symptoms.
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2 years of strange symptoms.
by Craig, Feb 07, 2001 12:00AM
2 years ago whilst on holiday i became ill with severe abdo pain. I spent some time in hospital and had various tests, the only test to show anything were one that showed i had a very high white blood count and xrays of by bowels showed that they 'were not working correctly' all other abdo tests were fine. After a week or so my abdo pains reduced and the doctors said the WBC test must of been incorrect, i was then discharged. A few days later i began to experience neuro symptoms which included pins and needles in hands, feet, and face, burning in lower back, top of thighs, and on right lower arm, muscles jerking in various places, and various other simliar type symptoms. I also began to become anxious and over a few weeks became confused, my memory became weak, i could not concentrate and had trouble following conversations. I was refered to both a neurologist and a psychatrist. The neurologist found slightly depressed reflex's but all tests were clear including MRI and Lumber puncture, he said that i might have something but it was not serious!!! The Psychatrist felt it was all somatic and refered me to a psychologist who disagreed and refered me to a Neuro-psychologist who tested me over 3 weeks with varios tests including WAISA-R, FAS and AMIPB and Luria Nebraska Screening Battery. These results indicated that in a number of areas i had organic damage and not anxiety related symptoms. That was two years ago and since then i have recovered but still felt my cognative abilities were reduced, three weeks ago it all started again firstly abdo pain, then neuro symptoms then memory problems, confusion etc..
I have seen so many medics with so many different opinions that i do not know who to believe. The last Neurologist i saw thought that it may be Porphyria but i tested negative for Porphyria, i was tested once from 25mls of urine. My urine usually darkens when i am having an 'attack'.
I would be grateful for your opinion and any suggestions on the way forward.
I have seen so many medics with so many different opinions that i do not know who to believe. The last Neurologist i saw thought that it may be Porphyria but i tested negative for Porphyria, i was tested once from 25mls of urine. My urine usually darkens when i am having an 'attack'.
I would be grateful for your opinion and any suggestions on the way forward.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Feb 09, 2001 12:00AM
Dear Craig:
Sorry to hear of your symptoms. We all your testing being normal including an MRI of the brain, it is difficult to tell you what might be going on. I would have put my vote in for intermittent porphyria. The symptoms that you describe are very similar to intermittent porphyria. How were you tested? Did they just test for the erythrocyte deaminase activity or did they measure porphobilinogen in the urine? There are some families that have normal erythrocyte deaminase activity but still have the disease. The only thing that I would add as testing would be an EEG during one of they events. I am sorry that I can't add much.
Sincerely,
CCF Neuro MD
Sorry to hear of your symptoms. We all your testing being normal including an MRI of the brain, it is difficult to tell you what might be going on. I would have put my vote in for intermittent porphyria. The symptoms that you describe are very similar to intermittent porphyria. How were you tested? Did they just test for the erythrocyte deaminase activity or did they measure porphobilinogen in the urine? There are some families that have normal erythrocyte deaminase activity but still have the disease. The only thing that I would add as testing would be an EEG during one of they events. I am sorry that I can't add much.
Sincerely,
CCF Neuro MD
Sounds like porphyria to me...!!!!! I have porphyria and have almost all of the symptoms you have and then some and I can go years with no AB pain. And for the record just because you have a negative test does not mean you do not have it. many things can affect the test, improper handeling or collection, exposure to light, wrong time in an attack etc..there are also many mutations that do not diminish the blood levels of PBG or ALA. I had several negative tests and I have a positive Dx of Porphyria after DNA tests and many many urine screens I have a mutated version of AIP/PCT they does not diminish the blood ALA or PBG and I never have a positive urine screen for porphobolingen. If you tests me after an attck my 24 hr urine porphyrin screen is compltely normal but if you test in an attack its sky high and My urine gets very dark in an attack and the window for positive tests during an attack in some patients is very small..I have been seen by one of the top porphyria specialists that there is. And if I would have based the first negative tests as my answer they never would have determined the cause of my symptoms and believe me glucose had almost made me well again with an occsional flare and some permanent neuropathy(The cause of the tingles) get retested for Porphyria when your symptoms are severe. I think its worth the effort because porphyria can be dangerous but you can be kept comfortable and stable and live a long life with proper Diagnosis and treatment......The dark urine is a good clue Take care and good Luck betty
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