[cj47413]

Hi Everyone!

This is a long message. I have broken up the paragraphs as much as possible because I know how hard it is to read really long paragraphs.

I am a 48 year old African American female living in the western WA area.

Well it has been a long time since you heard from me. My last postings were at least 7 or 8 months ago. At that time, I could not walk more than ½ a block. I had every symptom you can think of including;

• Tremors
• Spasms
• Beestings
• Severe vertigo
• Severe fatigue
• Severe pain
• Blurred vision
• Balance issues
• Memory and speech issues
• Inability to sleep
• Migraines
• Bladder and Bowel Control issues
• Constant falling and stumbling
• Dragging one or the other leg
• Raynauds
• Vertigo 24/7
• Unable to drive for 6 months
• Weight gain of 85 pounds (max out at 253)
• Extreme stress caused by everything above
• Etc,etc,etc……….

No doctor would take me seriously. The only diagnosis I could get was one for sleep apnea. I was given a CPAP machine that caused far more harm than good. I’ll explain further down.

A very nice lady from British Columbia, Canada suggested I try LDN. I cannot remember her name but after looking through the list of members Lady Express 44 if it is you, from the bottom of my heart, thank you! You told me not to give up. You told me to find a doctor who would take me seriously. Well, I took all of your advice and here is the update on my condition.

I went on the LDN site and asked Brenda for a list of doctors in my area who were willing to work with LDN. She sent me a private e-mail with the information. Sadly, very few doctors are even aware of LDN.

I found a doctor in the WA state area who uses both Eastern and Western medical philosophy. He believes the patient knows their body better than any doctor ever could. Granted he wasn’t cheap and my medical insurance did not cover the service, (thank God for credit cards) but he listened perform several tests and made the diagnoses of probable MS. He also diagnosed low thyroid. Ironically, I had been asking doctors for 3 years about my thyroid levels and they always said they were within range. Liars! The first sign was that my body temperature was never above the 97.0 rate.

I started on a combination of 3.0 LDN and 10 mg. C-Aminopyridine, both compounded pharmaceuticals. I also began taking the following vitamins. NOTE: These are not the exact names or vitamin vendors. If anyone wants to know the exact names feel free to e-mail me. Please be advised they all have to be prescribed and distributed by a doctor.

Omega-3
Magnesium
Multiple Vitamins
Calcium
Extreme Greens
Westhroid – non synthetic thyroid medicine
3 Other herbal medicines including a natural nighttime sleep supplement.

Within approximately 4 days, yes I said days, I noticed a huge difference. The spasms, beestings, pain, migraines and fatigue seemed less severe. The night time supplement was actually helping me to achieve a decent night sleep.

After one month he changed the dosage for LDN to 4.5. That is where I have been for seven months. He has increased my level of thyroid medicine.

How can I say it……. I am back!!!!!! I am literally a new person. I feel better than I have in the last 10 years. The ultimate sign for me was the day I went to a large shopping mall ( I drove) and my very healthy friend asked me to slow down because I was walking too fast. Me, the one who either did not even bother to go or had to sit down every few steps.

Because I am able to move around more I have lost 51 pounds so far. I have another 35-40 to go. And for the first time in 3 years I am actively looking for a job.

NOTE: The misdiagnosed sleep apnea and subsequent CPAP machine caused a major brain injury that I will have for the rest of my life. Of course, I can’t prove it was the machine but the timing of the onset of the 24/7 vertigo is too close to be a coincidence.

The pressure from the machine caused the bone in my temporal lobe that regulates what sound, air etc passes from one ear to the other to collapse. Most likely my bone was weak from birth.

I was given two options, a very dangerous and invasive open brain surgery to replace the bone or medication to help the symptoms. Needless to say I took the medication.

LDN may not work for everyone but it in conjunction with the c-aminopyridine has been a lifesaver for me. I don’t know how long it will last and I don’t care. I will take whatever I can get.

However, when I get stressed out about life, or a life event that is out of my control, some of the symptoms return. This is perfectly natural. How can I say it better, Stress kills!

I wish everyone the best and I will continue to read and pray for all of you and keep in touch with updates.

There is hope! Believe in yourself and don’t let any doctor tell you that you do not know your own body.

Love and Big Hugs,
Cathy

[lady_express_44]

Hi Cathy!

First and foremost, CONGRATULATIONS on taking the bull by the horns with your health issues, for getting on LDN, and for losing so much weight!!! I am so glad to hear you are doing well; WAY TO GO lady!!!

When I first read your subject title, I thought "hmmmm.... is this the name of a new drug on the market?" I must admit, I don't remember your screen name, and only vaguely remember our discussions from back that far.

I have spoken to sooooo.... many people about LDN, and sometimes I don't ever hear back about whether they got on it, how they are doing, etc. I choose to look at that as a good sign because if they were still suffering, they'd quite likely still be on the boards. Anyway . . . thank you for coming back to update us!

I'm not sure if you were aware, but the original Braintalk went down in the summer and took several months to come back up. In the meantime, and after a few months with no contact amungst friends, this board was opened for people to congregate. When Braintalk came back up a few weeks ago, many of us opted to stay here, or to continue to visit both boards. This one has recently been renamed "NeuroTalk".

Thank you very much for your kind words! I am still only on LDN (17 months now) and have continued to do very well, with no attacks. My EDSS score also dropped by one whole point the last time I was measured.

I am THRILLED to hear how well you are doing! Keep in touch now that you have the energy, ok?

Cherie

[SallyC]

WooooooHooooooo Cathy. Nice report. I am on LDN going on 4 yrs now and I will continue untill a cure is discovered or untill I die, whichever comes first. With all these new, expensive maintenence drugs big pharma is pushing, I don't look for a cure any time soon.

Come back and talk with us soon. It's great having you here.

Welcome (((((Cathy)))))

[NeuroNixed Craig]

Hi Cathy,

What a wonderful and refreshing post. It is amazing how the Western Medicine community is missing out on so many treatments that can really make a strong difference in our lives. So lucky you found a go doc and the fact that he helped you get the proper dosage of LDN and other compound meds into your system.

I feel so happy and excited for you. A very uplifting post and it is greatly appreciated. Thank you for sharing your experience.

Peace be with you.

[vlys]

Cathy,
Glad to hear you're feeling welll again!

I used 4 Aminopyridine yrs ago w/good
results but not sure of what C-AP is?

I asked my neuro about LDN yrs ago
& he never heard of it....he does now.

What yr were you DX w/Multiple Sclerosis?

I hope you continue to do well &
find a great job!

Good luck!

vlys