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I was DX with MS in August 2006 after Optic Neuritis (still not recovered fully) and an MRI that showed lesions. I have no other symptoms and never have had any symptoms. I am 55, had a mild heart attack in 1999 and was DX with diabetes in Mar 2005. And obviously at my age I have had numerous colds, sore throats etc through my life. (although not just before the ON).

Is the ON and the MRI combined enough to make a DX of MS?

After reading what feels like a ton of stuff on treatments, I am leaning toward the Wheldon regime. Will that hurt me if I don't (by some miracle) have MS? (can you tell I am in the denial phase?)

It appears that everyone recommends starting treatment right away....or would it really be better to wait till I have another exaserbation (proving it IS MS? What if I would never have another attack - should I still start the program?

I see an MS neuro at the end of Sep and want to be really clear in my mind about some of these things when I go. I have no idea whether he will be agreeable to the antibiotic regime or not.

I realise that anyone that comments is giving me their opinion and it is not medical advice. (gotta put those disclaimers in stuff LOL)
Colleen

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Hi,

I would DEFINITELY start the antibiotics right now!!! I say this as I feel that after starting the antibiotics I stabilized after nearly a year of going downhill in a fairly non-stop, progressive fashion. Whilst I have stabilized my walking is still as bad as it became and I don't think it's going to improve very much as the damage is in the spinal cord. I would especially recommend the abx as they aren't especially harmful unless you do the INH/rifampicin combination which can be very harsh on the liver. I wish I'd taken antibiotics as soon as I was diagnosed.

I think everyone with new dx or possible dx should have (a) a blood test (b) a hormone test. I think that should be done as soon as possible and then you should follow good supplement regimen (like the one on Wheldon's site) and possibly consider hormone replacement (in my opinion the pile of research reports on hormone involvement is just getting too high not to trip over). And when you've got some baseline stuff and you're covering the vitamin/mineral/hormone requirements and getting everything in balance, yeah I think I would try the ABX route, notwithstanding my signal lack of failure with that approach. Thats what I would have done, from the grand long view of having dealt with this for all of 20 months....

Ljm, don't forget that insulin is a hormone. I think it is a good idea to have that level tested, too; but that's ME, you know.

Hello Colleen,

I presume you have seen this topic:

http://www.thisisms.com/ftopict-2802.html

And here you will find more information:

http://tinyurl.com/pjhyp

Optic neuritis is often, but not always, a precursor of MS, but if you have the lesions as well, it seems a certainty: neurologists are wary of giving a diagnosis too soon for obvious implications of medical and life insurance.

With your history of a mild heart attack when you were still only in your forties and the adult onset diabetes, it seems very likely that there is a CPn component. David's regime will not hurt you if you don't have MS: he has used it himself for heart problems and many people use doxycycline for reasons as diverse as acne and malarial prophylaxis for long periods.

If you wait until you have another exacerbation just to make sure you have MS you are letting time pass which might be spent on making yourself better. I had my first MS symptom when I was 24 but then I went for nearly five years before anther attack. When it was finally becoming progressive, attacks were coming every few months, then they stopped and it was just a process of continual deterioration until I started antibiotics, since when it has been continual improvement. Some people never have exacerbations: it is just continual deterioration from the start.

If you want to discuss this with your neurologist, take this PDF file:

http://www.davidwheldon.co.uk/ms-treatment.pdf

It is more compressed and easily readable than printing out the whole of the site. Many neurologists are totally against this, because they think they have a propriatorial attachment to MS as an auto-immune disease. My neurologist is a case in point, which is why I haven't seen him for three years. However, you don't need a neurologist to prescribe antibiotics: many GPs will do that as the evidence becomes more pressing. Are you in the US or the UK? If the latter, you have the option of actually making an appointment with David. He doesn't charge. You can write to him from anywhere, though. Address at the bottom of the page one of the pdf.

Sarah

First of all -- to those that responded to me - THANKS!

Sarah,
Yes, I had seen the article about the boy with recurring Optic Neuritis. It says that they proved it through his spinal fluid. But, at the same time, I have read in many posts that often you can't find CPN just through the lumbar puncture and it is difficult to diagnose. Am I to infer that you think I should have the lumbar puncture to check for the CPN?

I have printed out, as you suggested, the compressed PDF file to take to my neuro appointment.

I have US coverage (although I am now living in Canada). All my Drs are in the US (right across the river). But, England is a tad further than I can afford to travel. (sigh)

I am very relieved to hear that the treatment wouldn't hurt me! That was a big concern of mine. I am definitely going to pursue the ABX course and track down a DR who will prescribe it for me. I am starting on the vitamins already.

ljm,
What specific blood tests or hormone tests should I be having? One that I know to ask for is the B12 test. What else should I be asking for?
I am staying away from the HRT. Everything I have read says it is not recommended for women with a history of breast cancer. My mom and her only sister, both had breast cancer. I had a suspicious mammogram, then a needle biopsy last year - thankfully, that came back clean. I know the research is back and forth between safe and unsafe; but I prefer not to risk getting something additional wrong with me. The odd thing is, that I sailed through menopause with narry a hot flash or a symptom.

lyndacarol,
I take it that testing insulin is different that using a blood glucose meter that I test with at home? What is the difference? Wouldn't the DR have done an insulin test, when I was first diagnosed and they drew many vials of blood?

Again, Thanks to everyone for all the help and information. Sometimes this site is overwhelming --- there is more to read than there are hours in the day! LOL And sorry, if I keep asking more and more questions.
Colleen

Hello again, Colleen,

Am I to infer that you think I should have the lumbar puncture to check for the CPN?

Gosh, no! There are very few places that can do that accurately so it might just not be found. I have never had a lumbar puncture and wouldn't want one. I did have a blood test for CPn, three weeks into the treatment, when the antibodies might have shown even higher than before starting, but the result was for non diagnostic levels. This test is very unreliable for CPn and I was already showing signs of responding to treatment because my disease was so active at the time. I was also tested for Lyme disease at the same time but that was resoundedly negative. Apart from the MRI, ordered by the neurologist, these are the only two tests I have ever had relating to MS, ordered by my husband, who then told my GP what to prescribe.

Sarah

Dove13--Yes, the test for insulin is different from your meter's test for glucose. The insulin test is not routinely done, only if you specifically ask for "a fasting serum insulin test."

Though insulin and glucose are connected, your insulin level can be high and your glucose normal or even low if your pancreas is secreting too much as in insulin resistance (Metabolic Syndrome X or prediabetes).

Hi Dove
could you get to Charles Stratton at Vanderbilt? it's just a thought
marie

Yes, I could get there once or twice a year if I couldn't find anyone locally to help me. It is certainly something to keep in mind.

Thanks for the suggestion.
Colleen

Another thought on that is that you find a doctor locally who would be willing to prescribe under Stratton's guidance. He is more than willing to do this, as being more convenient for people all round. He is primarily a researcher and lecturer so his time for actual consultations is somewhat limited. He is more than willing to talk on the phone, though, especially to other medical practitioners.

Sarah