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I am still fluttering around undiagnosed. its not cidp. right now I am looking at porphyria because of the abdominal pain I get before an attack. for years I thought that I had MS and this was the MS hug because I have it in my stomach and back. I have had a lesion in my cervical spine and I have no reflexes indicating peripheral disturbance as well now that I am looking at porphyria I am looking at family history and my uncle was told he had MS but never had an MRI because it was the 50s. there is overwelming evidence that what I have is genetic as my own father was paralyzed last year after pneumonia.
I hate alchohol it gives me migranes and makes me weak
every step I take out in the sun makes me weaker
my symptoms are cyclical around my period
I have had different reactions to antibiotics that have put me in the hospital with paralysis and psychosis

MS is a what and where but not really as much how and certainly not why

porphyria is a how what why where and even who gave it to you
it is autosomal dominant. you cant go much more basic than genes

My question is..
Has there been any connection between porphyria and MS?

BTW if you are undiagnosed I would check this disease out. one of the most common stories the porphyrics have to tell is the termoil of going to doctor after doctor with normal tests and being accussed of drug seeking and hysteria while writhing in horrible inexplicable pain.

It is not nearly as rare as reported and can cause autoimmune diseases such as lupus. It can even appear like guillain barre syndrome with an acute motor neuropathy.

Wow tara-
For YEARS to many drs with same symptoms you mention, and more.
I was the one who came up with porphyria, after having gall bladder removed and yet severe abdominal pain still remaining, then being in hospital for 3 weeks with this severe abdominal pain which got ignored because I had end stage cirhhosis at that point! ( this was when was being treated as chronic fatigue with high dose Diflucan for a year--totally messed my liver up--yes, I also can't deal with antibiotics, esp sulphur etc--caused a real problem when hospital gave me an infection!). While in hospital millions of tests to determine what might be underlying cause, but all centered on liver diseases. No final outcome, except severely compromised liver.
Few years later, again the severe abdominal pain--again to liver specialist, Definitley not liver, then to GI dr, not sure what, again millions of test. Then to my general dr-who I approached (after much research)with thought of porphyria.
We tested a # of times, but is difficult to test for--one part of test showed postitive, second part did not. Dr now suspects I have it, but you have to be in the midst of the attack for your urine to show it.
Definitely the history there thru full family.
But did also test for related (or actually same?--just is term used by the alternative doctors) again at my instigation, not doctors, pyrroluria--and was postitive!
Need high-dose Vitamin B6 and zinc to correct--correction works to some degree.
Links:
http://www.nutritional-healing.com.au/c ... =Pyroluria
(the Bio center in Wichita Ka is considered best--I use them--but you have to off all supplments for at least 2 weeks I think --which they forget to tell you!)

I have lots more info--am amazed to find someone here with similar problems--if want to discuss further, PM me.

I have been diagnosed as MS by neurological opthalmologist because of history, and optic neuritis, and MRI brain lesions.
Neurologist says possible MS, but also looks like vascular problem.

ADDENDUM: 1/23/10 Just found this extremely interesting take on MS --the author links MS to Porphyria, defect in heme synthesis! Have never elsewhere seen anything on this to link the two, but my history certainly would seem to: http://www.drgeorgepc.com/MEDMultipleSclerosis.html

LOL further addendum: just found this link http://users.stargate.net/~rnr/
which appears to be the original research -- looks like dr george pc "stole" it verbatim!

Well, Well - when I was suffering intense abdominal pain and vomiting 2 yrs ago I asked the liver specialist who I had to see after they found a small amount of calcification in my liver and also found that I was severly low in iron if I had porphyria (I wasn't discounting the ms) and he said no. I also had a lesion around the area in the spine - so, they attributed the pain to this.
I took the iron tablets prescribed - the pain - eventually went away - and I forgot about it ........ until now ..............

Dahlia,
Interesting.
what did they attribute the calcification to? I had large calcification(?)--they thought it was a tumor of some sort, biopsied, and the biopsy needle bent 45 degrees when technician tried to pierce it!! No mention of what it was, but it eventually disappeared (took a few years--ultrasounds continuosly marked its demise)--but no radiologist ever mentioned calcification (but they did not really identify it at all, but said it needed to be tracked in light of all the other liver probs)--but in light of its disappearing eventually, calcium deposit sounds about right to me.

Really interesting posts! I'm currently trying to get a DX for Porphyria, and I realise how hard it is to catch a sample during an attack. My liver seems fine, but I get it in the joints. I have an iron loading gene C282Y, and my original trigger I believe was my iron levels getting over the normal limits in 2007 and i started getting bad fatigue and stiff/sore joints.

I got a brain lesion in 2008, two weeks after a big dental injection and lost the use of my right hand and general weakness. I got the use of my hand back over a period of months and just suffered the fatigue and joint pain until I went back to the dentist for another small filling in late 2009. That put me totally into fatigue, I fell asleep everywhere, out visiting, at the movies, felt like I was made of concrete, such a heavy feeling and suffered a spastic fit. I also got the rash (blisters).

I've had phlebotomy to reduce my iron levels, and I'm coming right now but I'm still reacting to sulphites and preservatives in food, vomiting if i use a certain toothpaste, all sorts of weird stuff going on.

My son had exactly the same reactions over a period of a few years when he started school. He'd had a couple of local anaesthetics prior to that.
Reacted to all sorts of food additives and certain natural foods. He had brain problems and a rash. They didn't know whether he had aspergers, ADHD, the doctors were a bit confused by it all. I could see his reactions to foods, so under a dietitian who had trained in food intolerance at Prince Albert Hosp in Sydney he came right slowly. He doesn't seem to react now and has no brain problems, but I do watch that he doesn't get too much of his old triggers. Everything in moderation.

So now I'm basically on his old diet. If anyone is interested, it's called "Failsafe" and was developed by a woman call Sue Dengate in Australia, in conjunction with dietitians at Prince Albert Hospital for food intolerances. It really helps get you back on the straight and narrow.
Hard work finding out what your triggers are though.

Link to failsafe diet info http://www.fedupwithfoodadditives.info/

Below is what I reckon is happening with my joints, pseudo-gout (people with hemochromatosis get it). It comes and goes but is totally relieved after a good bleeding. Funny that it correlates with the liver deposits, maybe we just cop it in different places. My knees were the first to go, then hips.

Calcium pyrophosphate dihydrate disease (CPPD) is a rheumatologic disorder with varied symptoms arising due to the accumulation of crystals of calcium pyrophosphate dihydrate in the connective tissues. It is more commonly known by alternative names that specify certain clinical or radiographic findings, although neither is synonymous with CPPD. Pseudogout refers to the acute symptoms of joint inflammation or synovitis: red, tender, and swollen joints that may resemble gouty arthritis (a similar condition in which monosodium urate crystals are deposited within the joints). Chondrocalcinosis[1][2], on the other hand, refers to the radiographic evidence of calcification in hyaline and/or fibrocartilage. Pyrophosphate arthropathy is a term that may refer to either of the above.[3] Statistically, the knee joint is the most commonly affected

The calcification was put down as an anomaly ?
My abdominal pain has returned - started about 5 days ago and is getting worse, was on the right upper side - now centre and am feeling it in my back behind the pain in the abdomen. I guess it’s back to the doctor.
................ was there a few weeks ago and liver enzymes were slightly elevated. I'm so sick of doctors ....

Bethr,
thanks for the Failsafe info--By much research, and trial and error, and a few allergy tests, I have worked out a diet very similar--but you are right, the Au site has stuff no one else has. I have pretty severe reactions to fruit--what i think is the porphyria severe central gut pain--always just assumed it was the fructose--but after looking at the Failsafe diet site, see it is salicylates that are the culprit. Could never understand why i could pretty much tolerate the odd golden apple, but no other apples--and sure enough, golden is the one with the least salicylates! And figs put me in the hospital--again, high salicylates--grapes and raisins create havoc etc etc--all the high salicylate foods are ones i have found can't tolerate--including broccoli--although i seem okay with broccoli sprouts (will have to research if sprouting alters the salicylate).
Yet, can't tolerate the NSAIDS for pain relief, aspirin works despite being high salicylate.

Dahlia,
Wishing you all good luck--as I read you description, I could feel it! Was that way for ages--first got gallbladder out, didn't help at all. Then found to have severely compromised liver, so that has been the drs focus for years now--when I think it is also porphyric pain going on. Diet and supplements help immensely.

Let us know how it works out.

shye wrote:Bethr,
thanks for the Failsafe info--By much research, and trial and error, and a few allergy tests, I have worked out a diet very similar--but you are right, the Au site has stuff no one else has. I have pretty severe reactions to fruit--what i think is the porphyria severe central gut pain--always just assumed it was the fructose--but after looking at the Failsafe diet site, see it is salicylates that are the culprit. Could never understand why i could pretty much tolerate the odd golden apple, but no other apples--and sure enough, golden is the one with the least salicylates! And figs put me in the hospital--again, high salicylates--grapes and raisins create havoc etc etc--all the high salicylate foods are ones i have found can't tolerate--including broccoli--although i seem okay with broccoli sprouts (will have to research if sprouting alters the salicylate).
Yet, can't tolerate the NSAIDS for pain relief, aspirin works despite being high salicylate.

Hi Shye,
Sorry not to get back to you on this. I've been elsewhere and going through quite a bit at the moment. I'm 99% sure it's Porphyria that runs in our family. Salicylates was the one I really had to avoid with my son. If you read up on the Porph diet it never mentions salicylates, but does mention Balsam in citrus and of course all the brassicas are out. Citrus was my sons worst trigger. he can eat the odd orange now, but then again in between he's grown from 3ft tall to 6ft tall (14yrs now), so his tolerance might be better, especially as He's using a lot of iron to grow, so his iron reserves might be down.

I've given up getting blood draws now, because i believe it might hinder my Porphyria tests that hopefully will be coming in the next two weeks. So of course I've gone back to sleeping afternoons daily and my joints are absolutely aching.
I'm getting nerve pain in my lower back, but only in mid menstrual-cycle, it responds to nothing I have on hand, and i don't generally take any drugs, especially now that i know I can seriously react to drugs, chemicals and foods.

I reckon I can get back out of this, if i just stick to the rules (and avoid dentists or getting some stitches and a local anesthetic by chance ).

I'm just hoping that my sisters nerve damage isn't too serious. She needs her hands for her job. If we can get her iron levels down she might stop progressing. She may also need to change her profession, she's a hairdresser with all the associated chemicals! She's getting a daily dose, so no wonder she simmers. Since perms went out of fashion, she has stopped losing her legs and eyesight.

It's funny how you can see the picture when you look backwards.

shye wrote:Dahlia,
Wishing you all good luck--as I read you description, I could feel it! Was that way for ages--first got gallbladder out, didn't help at all. Then found to have severely compromised liver, so that has been the drs focus for years now--when I think it is also porphyric pain going on. Diet and supplements help immensely.

Let us know how it works out.

Thought I'd mention that my Nana (who is a suspect for handing down the Porph gene) had her Gallbladder out too. So it seems have half of the people on the Porphyria forums I follow. Just thought that was interesting to note. My brother has a stuffed liver too. He gets the Porphyria rash also, but is still undiagnosed at this point. Hoping to change that shortly, he's so sick!

I am getting close to remission. this stomach thing is caused by the vegas nerve I here. makes sense because when I get stomach pain I also get some weird swelling in the base of my scull and vertigo. anyway another way to correct porphyria is not avoidance but being mindful of your nutritional deficiencies especially ones around your calcium metabolism. understand that calcium is not only extremely important to my nervous system it is important to my immune system as well. when my immune system comes out it uses acid and then with vitamin D and calcium the acid is nutralized.
just adding a new question
so we need acid for our immune system but it also needs to be neutralized. If something is wrong with our calcium/vitamin D metabolism then what happens with the acid. does it stick around and cause damage

ever noticed how lessions look alot like someone threw acid on your brain

I know I know I am full of theories but I think I like this one.

Funny you should mention the calcium. I'm pretty sure my son has Porphyria too. he had a serious attack in 2002 and we put him on the "failsafe" diet. They advise if an attack is coming on to take a calcium pill. We did this, and had bottle at school too, so the office could administer it if he started to go off the deep end. It seemed to work, but i never knew if it was neutralising something or if it just "changed the subject" so to speak. Hard to know with a 6yr old.

Must give it a go myself.