Originally Posted by DejaVu

Dear mrsD,

Thank you for your firm and important post of caution.
I do appreciate the firm warning...absolutely!

In mentioning the magnesium thread, and the goal of being sure I have restored any nutrient, I have not meant I'd be utilizing megadoses.
I have realized, while having been ill, my diet has been deficient, on top of likley having had nutrients depleted from medications, for probably quite awhile now. Yet, any "deficiencies" will be slowly restored, staying within the guidelines of RDA, uless directed otherwise by a physician.

(If I were to add in potassium once, I would not repeat that; yet I did not post that information clearly and I apologize if it was misleading/potentially harmful to anyone reading. I have found this helpful to me, on rare occasions...when I have been eating a high (relative) protein diet. Even so, I only supplement this maybe only 3-4 times a year. I never supplement this on a daily, weekly or even a monthly basis. My doc is fine with my adding in potassium ...once... as I have described, if I can see my diet has clearly been deficient for quite awhileand I am having muscular cramping of an unusual nature. I had failed to mention my doctor's approval.)

I did understand your information on Magnesium and did not mean to imply the thread had endorsed any mega-dosing. My apologies, again, if my post could be interpreted that way. I had simply meant the Magnesium thread had helped me to understand the importance of magnesium absorption and that...eventually, using a highly absorbable form, I would likely be back on track. (I was not trying to "fix" that overnight, in other words.)

I do deeply appreciate your voicing your concerns about safety.

Yes, mrsD, I have co-occurring conditions that I have not yet shared.
This is simply because I had been so suddenly/acutely and severely impaired by the neuropathy issues I have mentioned. I have been needing to keep my focus on this more immediate issue, in hopes of relearning information I had forgotten and/or is no longer the best information (the most accurate information) available on neuropathy itself.

This most recent exacerbation has been so acute and intense that I have not had the energy to yet get to the entire history/story. I have just been trying to stabilize the neuropathy symptoms enough to make them more tolerable, while I wait for EMG and Evoked Potentials and further instruction/opinion from my neurologist.

It is not my intention that I will not share co-occurring conditions. I just have not been up to writing it all out and have been so affected by pain and fatigue that I could not yet guarantee not missing (potentially) important parts of the story/the whole picture.

I find my cognitive abilities very "cloudy" (since this exacerbation onset) compared to my usual ability to write clearly and succinctly. Yet, I am truly trying to write as clearly as possible. (I think my somewhat "rambling posts" are evidence of this difficulty right now.) Yet, I am truly trying to relate information.

What I can try to share in a summary-type fashion :

I was suddenly struck with acute illness over 20 years ago. I was seen, evaluated and studied by Chronic Fatigue Syndrome and Fibromyalgia researchers. I was mostly seen by the CFS researcher (Harvard) and was evaluated then for fibromyalgia, as well in a study done together by the CFS and the fibromyalgia researchers. I was diagnosed as having both conditions by Harvard researchers.

I was very ill with CFS and had been thorugh endless testing while participating in the CFS research. I was a "subject" in some of the SPECT exam studies doen on CFS patients. (I'd had "abnormal" SPECT exam then.)

Once severely ill with what was labelled as "CFS," within 1-2 years,I had started to experience many other conditions I had not previously encountered: allergies, asthma, hypothryroidism, various immune system abnormalities, neurological symptoms and signs, severe migraine, trigeminal neuralgia, an intermittent/episodic mild Bell's Palsy (especially in hot weather), and more. I had experienced "attacks" of neuropathies, which had originally responded well to repeated treaments of oral prednisone, over a number of years. Eventually, the oral prednisone did not work any longer.

Many, many specialists have consulted on all of this.
I'd had a long period of ongoing neuropathy; this period had lasted for at least 5 years. These were considered sensory, motor and had started to show autonomic involvement ( neurogenic bladder, etc.) The "attacks" could not be stopped by prednisone anymore and the symptoms had stayed and had become chronic.

I was told then (during the prolonged and active period of neuropathy that I have (had): "immune-mediated inflammatory process of the central and the peripheral nervous system." (I am interested to see if this continues to be the opinion at this time.)

Approximately 4 years ago, a new Rheumatologist was also consulted and she'd had some new insights. She'd suspected antiphospholipid antibodies were involved and she was correct. (However, there is no proof of primary lupus. So...this is considered primary antiphospholipid antibodies.)

The fibromyalgia diagnosis is still considered applicable, in her opinion. I have lots of "osteoarthritis," tendonosis, burstitis.
I have 3 consecutive cervical discs ruptured. One has an osteophyte growing inward toward the spinal cord, as at last check was relatively close to the cord. THis had contributed to/caused right sided radiculopathy.
(We now suspect additional "spurs" and/or osteophytes and will do more investigation into these suspicions.)

She has also diagnosed an undifferentiated spondyloarthropy. She is waiting for further evidence. Currently, she is suspecting either psoriatic arthritis (without skin involvement) or ankylosing spondylitis.

(Two neurologists had offered differing opinons..one thought I should wear a neck brace to help to stabilize neck...one disagreed. All docs disagreed with the one neuro recomending a neck brace, arguing it would cause further neck weakness.)

I have demyelination on MRI brain scans...considered to be a part of severe and chronic migraine (potentially a result of chronic migraine resulting from antiphospholipid antibodies). This scarring has been not in areas considered to be evident of M.S., as of three years ago. (An MS expert did look over the MRI scans.)

While testing had showed nerve healing (3 years ago), I was left with a baseline of chronic pain. We have attempted almost of the antiepileptic drugs, etc. (I think Keppra is the only one we have not tried.)

I cannot use NSAIDS as I have had GI bleeds form even short courses. This includes OTC and prescription meds. I reamin on 3.5 mg. of prednisone that my docs want me to stay on right now..as it had taken a year to drop from 5.0 mg. to 3.5 mg and was very, very difficult. (This is from trying to taper off of a short burst of prednisone over 4 years ago. Further tapering creates such a problem with symptoms , docs want me to hold here.)

I can use (sparingly) a topical NSAID cream with an anesthetic mixed into it as well. YEt, I have to use this vry sparingly, to limit the amount that makes it into my blood stream, as the NSAID have an affinity for GI tract. (This has been made up by a compounding pharmacist for me for three years now. I think I have hear one NSAID topical formualtion has been approved by the FDA and may be available now, or soon, with a prescription. I think this will be mass-manufactuered, as opposed to being made up by compounding pharmacies.)

I have to use morphine daily, 3xdaily and dilaudid for breakthrough pain.

We were attempting antiepileptic meds, again, to try to ge some better control of pain, headaches, etc. (I had tried Trileptal for a third time, for 4 months and we had then tried Depakote for those two weeks or so, when I'd had the hypersensitivity/immune response to Depakote.)

I am female and in my mid-forties.
I have been medically disabled with illness for over 20 years now.
This had started with immune and neurological issues, which have only become increasingly severe over the years.

Now..I have tried to cover as much as possible today. I may have forgotten something..simply because my thinking is not super clear right now. (This cognitive cloudiness usually clears up with time, after an acute exacerbation.)

Thank you for the "drug interaction checker" links. I have a couple I have useed, yet these look better to me.

I hope this information is more helpful?

Thank you , again, for your input/opinions/advice.
I know you deeply care about people's welfare.