Mel,

About wounds - I heard of Aloevera Gel by "forever" that is good to cure such wounds.

Take care

Rina

Hi Rina:

I'm afraid Alan is way past the Aloe Vera stage. His foot ulcer is re-curring due to a malformation of the bone in his foot. That is why it heals, then re-occurs.

I just got off the phone with the Wound Treatment Center. Told them all about Alan and he was on the other phone. It was very interesting. I asked about hyperbaric oxygen therapy and she said "oh yes indeed but a person must qualify for that, and when I said "what are the qualifications?" she said "well, does he have a bone infection? and I said "no", and she said "Oh he just has an ulcer that does not heal?" and I said "yes", and I further said "He is not a diabetic" and she said "really???" and I said "the podiatrist said his ulcer gets better and then gets worse because of a malformed bone, and she went "Ohhhhh, I get it, well, usually, if that's the case, we just shave down the bone". And Alan immediately said "yeah, but my doctor said he can't do that in my case" (we don't know why).

So this person said "every case is unique and there's many things we do here". So we gave these people all the information they needed to check with Alan's insurance. And we are waiting for a call back.

He will go to his podiatrist on Thursday, we will say we want him to see a wound treatment specialist and we will get copies of his latest x-rays, and whatever. That's the best we can do. Oh, by the way, the lady at the wound treatment center told me not to use a betadyne wash anymore, (I haven't for a while). She said "use simple saline instead", (that's what I've been using). I bought sea salt recently, and I just put a bit in some warm water, and rinse and put the dressing on his ulcer. There's no more hole but there is dried blood and I have no idea what will happen on Thursday.

So we shall see.

bye for now, Melody

I'm wondering if all of you had blood tests indicating something autoimmune was going on that lead the doctors to order the LP.

I know that Alan has psoriasis, which is autoimmune, and had some positive autoimmune markers. Did the rest of you?

Because I have no markers for autoimmunity, and was seen at the Mayo Clinic, and by Dr Latov, as well as two other neurologists, and none suggested an LP.

Thanks

from my own experiences the testing for autoimmune markers was a two stage event.
The neuro who was in the process of diagnosing me was ever so politically correctly SLOW! So I went and got that good old 'second opinion' route. I don't know how it lucked out but I ended up with the head of the neuro dept at Georgetown Univ!! It was he that looked at me, had me do the walking stuff, the close the eyes stuff- I HATE that one TILT?, and then ordererd the MRI's to be set up and took a LOT of blood tests..He sent his diagnosis to ME with copies to my primary and neuro docs. As much as I respect G'town, I really cannot 'do' all the corridors from the parking lot to the offices...even w/valet parking. The G'town neuro ordered some more f/u tests and my neuro was nudged to take over from there-w/those blood work-ups and the spinal. The local guy now had the ammo he needed plus another doc to justify any and all concerns about diagnosis and treatments.
4-1/2 weeks after the tests came back I'd been cleared and started on IVIG.
My immune #'s were off kilter, I don't remember how much, but DO recall that it was flagged on the tests-for both the spinal and the blood works.. I also had other bloodwork#'s off kilter, nothing dramatic, but not enuf to then, nor do now make much sense. I WILL master those tests yet!
I believe in my case it was the pneumonia a few months earlier, how quickly the numbness spread for a while, then later only kept creeping up towards the trunk. I also believe that my thyroid, which had 'acted' up a few months after onset and before diagnosis [now diagnosed as Hashi's] was either a reactor or contributor to the AI#'s...but I'd only one blip in that quarter and no one thot to check the auto-i Thyroid #'s on that at the time, as basic TSH #s were normal once meds were adjusted...Same with the cancer aspect...that was NOT checked at the time of CIDP diagnosis. I do believe it's gonna become more common to have it done in the future tho...I don't think I could be the only human with all these things going on in such a short time span!
Long, complex-have had lots of time to think it out...I believe that it just took the pneumonia to start the dominoes falling, whether genetics or whatwhoknowsallels came into play. We are HUMAN, therefore we don't usually meet the criteria for being lab rats that are genetically engineered for much of research.
Well you now have the short version of my getting diagnosed and the whole blood work and spinal issues.
LizaJane, I was not at all internet conversant at the time this all was going on...I did and got all my opinions, second opinions and more opinions before I became so-it was pure instinct that nagged me to do MORE. I did learn tho - that I'd gotten things done correctily - thanks to your worksheets. Something I 'liken' to the 'roadmap' of the diagnostic processes. - j

Well said J thank you. Sue

LJane,
When I went to Mayo, I was on high levels of methotrexate and Humira. None of my blood tests were positive, but...they had been in the past. Maybe 5 years ago. I was considered sero-negative But I did have 2 positive lip biopsies for Sjogren's.

Billye

Joan, Al (channeled by Melody), and Billye--you all had your spinal taps AFTER there was evidence of an immune problem in the blood.

I'm working through some articles--want to see if it makes sense for EVERYONE to have an LP.

What I think is happening is that there are some changes taking place in the diagnosis of neuropathy. There are some advocating only a few categories:

1. GBS: In this group, some would say all inflammatory neuropathies belong. And all improve with IVIG or Plasma exchang. Usually it's motor, but not always. I think they'd put neuropathy associated with connective tissue diseases (sjogren's, lupus) in this category.

2. CMT: All genetic except Hereditory tendency for Pressure Palsy belong here.

3. Diabetic
4. Toxic

i think with this categorization there are many fewer idiopathic cases, but I'm still reading. When I'm done reading, I'll make it its own post.

But I'd love to know if anybody here has had a spinal tap with normal bloodwork? I'm beginning to think it makes sense.