This Is MS Multiple Sclerosis Community: Knowledge & Support

Totally agree with lyndaCarrol, you have to go with what fits, try it out, and if it doesn't help, try again. I've been through the Candida ringer many years ago. Getting off the contraceptive pill was my cure in the end after years of Nilstatin powder and no sugar, low carb, that was the key for me.

Some Porphs have high iron, some are anemic, so it can go both ways, same with MS.

Keep posting! I know how hard the insomnia can be. It's just so frustrating when you know you need the sleep but it just wont happen. I have been like that a lot over the past few years, so really feel for you.

My key was to get my iron levels down, but that surely wont work for everybody. Try not to stress, (I know, hard to do). Write a diary of what goes on every day and see if there is any patterns or triggers that might give you a clue. I do a 28 day menstrual cycle one and a daily one and it's really opened my eyes as to what was happening, what sets me off, times that are better than others. It's been eye-opening for me.

Thanks everyone for your support. I'm keeping a journal of what I eat/how I sleep all details. It is scary on how far I have spiraled down in 4 months- I know I had been progressing for past 4 years -but don't understand how taking a few drugs and herbs could have sent me over a cliff.........

I do think that all the problems are related -- the dizziness ,gait, coordination eye pain, head pressure jerking , twitching , numbness, weakness, insomnia, shakiness etc-.

It's frusrating how silo'd medicine is and if you don't fit a specific profile i.e MS they have no idea what to do with you. Where is House when you need him? My kids keep saying - Mom you need house. We all do!
If you don't fit a profile they want to lump you into CFS/FMS bucket. those don't cause optic neuritis, head jerking, numbness, body jerking , coordination issues etc etc! I can't believe the neuro wanted to go in that direction.

Taking one day at a time- I hope that I can recover from this..although I know that lyme treatment will send me over the cliff again if I go that path.

My PCP says chronic lyme( he is outside of mainstream medicine) -he's given up on me and wants me to go big name lyme doc in NY who I have an app't with . They treat with aggressive abx. At this point I'm afraid abx will send me into seizures /or just push me over the edge to being bedridden(that's kind of what it feels like when I have so much pressure in my head/eyes and jerrk forward right now )--again I had had jerking etc prior to December/flagyl/diflucan-but NOTHING like the agony and -

Anyway thanks again for listening-- trying to stay positive/meditate/thing positively--but this neurdegen stuff is so scary.

Have a read of this newsletter Thelmahope, it mentions the optical neuritis in Porphyria. My sister had that, plus the severe chemical sensitivities.
She's had a DX of MS for 20 years, but it never really fit all the symptoms she has.
Once you have a label, doctors put it all down to MS. She's also just been through an EMG, but they still put it down to MS and have never mentioned Porphyria to her.

Now that I've also come down with "whatever it is we have" in the past couple of years, and we are searching for something genetic that fits the bill. I get the rash in line with my monthly cycles so that made us look further. Not all porphyrias have the skin symptoms.

http://porphbook.tripod.com/Jan2005.html

What is the test for porph? Will my GP know how to test for this?


Interesting that it talks about anxiety and my nervous system is overdrive during this crash- shaking , burning, insomnia, can't bring my nervous down


The chemical connection sounds interesting since I' seem hypersensitive to things.

Is jerking and twitching and numbness, brainfog also symptoms of this?

Thank you!

I don' t get any rash's. When I had he fibro symptoms they were always worse around monthly cycle. Prior to this crash I didn't notice any major increase at monthly cycle -perhaps more eye pain/headaches.

Is there a treatment for porph?

There is a genetic test, but they need to know which Porphyria you most likely have first, as the tests are expensive and there are so many genes to check.
urine, faeces and blood can be checked for porphyrin content when you are in an acute attack, but the window is so short the tests are often negative. Very hard to diagnose. These is no cure for Porphyria, you just have to stay away from triggers.

I have had the brain fog, twitching and numbness. My sister gets these really bad, especially the numbness. She has nerve damage in her elbows, fingers. Has had trouble walking when she reacts to things and is really shakey. I showed up with epilepsy and a brain lesion in my attack in 2008, and had a massive spastic fit in Jan 2010 after a dental injection.
I was iron overloaded at the time so that probably made by "cup runneth over".

You can see why it's difficult to distinguish from MS.
You also can get brain lesions, but not necessarily.

Hope that helps. Most doctors know nothing about Porphyria.
It is supposedly very rare. But there was a genetic study done in France on a large group of blood donors, and it showed that about 1:1600 carry the genetics. 90% of genetic carriers never get any symptoms.
So it is more common than doctors think.

Spoke with Neuro today and brain MRI was normal (he didn't think cervical was necessary)- I guess that is good news- only I' am so non functional/ill in every possible neuro way! I knew I didn't fit the normal MS mold-- will see where it goes with the neuro-he at least is going to entertain me and shine the light in the back of my eye to see if it helps me sleep again.... experiment. So I guess that's cool. He's clueless on my case though. Nice guy though and impressed I got a call back! (on the eye /light /sleep experiment).

It's quite uplifting when you strike someone who makes an effort. I've seen some real jerks on my recent round of the specialists.

Finally struck one today, a rheumotologist, who was looking at my painful joints. She went right through my history, and at the end says, "your joints are really good, but I think what you have is Porphyria, do you know what that is?". I nearly fell off my chair, finally an answer!

I'm off to a dermatologist next for a biopsy on the rash and to find out which Porphyria I have. It's not such a nice thing to have, but at least I basically know what I'm dealing with and can avoid triggers.

Hope you get some sleep

Cheers.........