Symptoms, Diagnosis, Please Help.

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Symptoms, Diagnosis, Please Help.

Postby savagek » Wed Aug 29, 2007 12:43 am

Hi,

My main question at this point, Can a sinus infection (that apparently I had on and off for a long time) cause this auto immune problem which could be diagnosed as MS?

Some history:
It started in march of this year (2007), I got some numb like feeling in tongue, lip, chin. Ended up on blood pressure meds and monitoring blood pressure for next month. I then got numbness in my hands and feet, then trunk. I ended up at the hospital as I was worried something serious wa going on. They told me to get off the medication I was on and if it continued to see a Neurologist. I talked with Pharmacist who told me the meds should be out of my system after 10 days. So I waited about 3 weeks and still had same symptoms, so I got a refferal to a local Neurologist and had to wait another 3 weeks for an appointment. During the wait I started a new symptom which gives me a shocking feeling down to my feet and hands when I bend my neck.
Went for MRI of brain and spine in which they found lesions and inflamation. Did lumbar puncture week later and 3 days of seroid IV treatment at hospital. After the results of the LB I was told I had MS and have been doing IV treatment once a month ever since.
I was told by my sister's doctor back in Massachusetts where I lived all my life (I now live in Michigan 7 years), that I need to rule out Lyme disease if I was diagnosed with MS. I then asked what test were done to rule out Lyme and was told nothing, but he said we will do an antibodies blood test which came back negative. Duting this time I was taking with the Michigan Lyme Disease association and they told me that test was junk and that it is void as I am on steroids. They told me to see a Lyme Literate doctor to rule out Lyme. So I have just seen this Lyme Literate doctor and I am know getting a Lyme disease test through some iGenex lab in California as this Lyme Literate doctor said they are the best. As all my records were sent to him, he looked everything over and also checked me out and taked with me for a long time which I really found nice for once since this all started. Anyway, this doctor found a big sinus infection and asked me if I had sinus problems, that is when I told him I had minor problems on and off for a long time. He also said I had high liver enzymes. He put me on 2 - 500 milligram antibiotics twice a day (2000 milligrams Total a day) for 30 days. He also recommended me not to do the steroid IV treatment. I will soon get my results for Lyme test.

I am sorry for this huge story but I have not talked to anyone about this really besides family and I wanted you guys to hear my whole story.

Any input, direction, help etc.... would be much appreciated, Thanks you so much for your time.

Rob
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Postby Loobie » Wed Aug 29, 2007 4:21 am

There are so many suspicions as to what triggers auto immune diseases. I would just keep getting tested and go from there.
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Postby jimmylegs » Wed Aug 29, 2007 7:14 am

i had the shooting feeling when i bent my neck, it's called l'hermitte's sign and in my case it's gone but i am pretty sure my lesions were from b12 deficiency (plus a couple other contributing factors). my followup mri is in sept so we'll see what the news is. as regards your main question i can't really help much there, but i would think a chronic sinus infection means something is squirrely with your immune system... there are probably some steps you can take to regulate/boost there...
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Postby Loriyas » Wed Aug 29, 2007 8:38 am

Hi Rob,
I sent you a pm regarding sinus infections and ms. Check it and let me know.

Lori
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Postby savagek » Wed Aug 29, 2007 10:07 am

Everyone,

Thanks for the input and fast replies.

Does anyone agree with my Lyme Literate Doctor recommending me to stop the IV Steroid Treament?
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Postby savagek » Wed Aug 29, 2007 10:37 am

jimmylegs wrote:i had the shooting feeling when i bent my neck, it's called l'hermitte's sign and in my case it's gone but i am pretty sure my lesions were from b12 deficiency (plus a couple other contributing factors). my followup mri is in sept so we'll see what the news is. as regards your main question i can't really help much there, but i would think a chronic sinus infection means something is squirrely with your immune system... there are probably some steps you can take to regulate/boost there...


Hi jimmylegs,

What medications are you taking if any or how did you happen to get rid of the l'hermitte's sign as I would really like to get rid of this.

Also how did you determine the b12 deficiency?

Thanks for your input,

Rob
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Postby jimmylegs » Wed Aug 29, 2007 12:05 pm

hi rob no worries, i hope you can use this info...

i had a documented history of b12 deficiency - as low as "<75" (the test they used did not register levels any lower than 75) due to dietary factors. one day a few years back i started to notice numbness in my feet and asked the doc to check my b12 because i knew my diet was a risky one, and sure enough it was really in the basement. in some people it can be to do with b12 metabolism, intrinsic factor, parietal cell antibodies, all that jazz. eventually i started having more serious problems, which precipitated more tests and the ultimate dx, based on my having a selection of results that were not consistent with b12 deficiency alone (such as brain lesions and o-bands in my spinal fluid)

i'm not on medication, but i knew my b12 scenario was bad and eventually figured out (not supported by tests) that the rest of my b-vitamin status sucked too. i did some megadosing which is documented on this site starting around march 2006 i believe, mostly in the regimens section. had to add the rest of the b-complex before i saw really significant results, and i think in my case cutting out alcohol and its b-flushing effects has firmed things up even more. can't wait to see next brain and spine mri!
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Postby viper498 » Wed Aug 29, 2007 8:23 pm

savagek,

First things first. I would recomend contacting Tory2457. She is very knowledgable on Lyme, and infact has/had it. She has been to a Lyme Literate doctor as well, but again she has and knows so much about the very questions you ask, and she is very friendly and willing to help.

Also, I've had a very similar experience to yours with my "MS". I just recently had developed the "shocking" sensation that went to my legs when I bend my neck (L'hermittes sign). It is gone now.

I have had sinus problems for the last 4 - 5 years, but never before that. I have also had high liver enzymes, but for no explainable reason?????!!!! I had numbness through out my trunk, hands, and have had on my right foot. Right now I have no out right symptoms. I have been on and off of Rebif 44mcg. Right now the only thing I am treating my "MS" with is Minocycline (100mg Twice daily) and high dose Omega-3.

Just this last Sunday I had a severe sinus infection with fever, it came out of no where this time, and also affected my ears. I am better now, but this time I didn't have a relapse, or at least not yet. This year I have had two bouts, not including this last one, of sinus/ear infections and both times I had a relapse.

So I'll stop rambling on, but I can relate to your symptoms, and I am also curious about the high liver enzymes. This has been the case for me for the last four years (caught on tests not related to MS problems).

Best Regards,
Brock
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Postby savagek » Wed Aug 29, 2007 11:12 pm

Hi Brock,

Thanks for the info, I sent Tory2457 a message.

Our symptoms our very similar numbness, sinus, and liver. Have you had any MRI's? any lessions? just curious to see if that is similar too.

How long have you been on the Minocycline (100mg Twice daily) and high dose Omega-3.? Also, how long have you been on rebif? as this is one of my choices Rebif, betaseron or copaxone which my Neurologist wants me to start very soon if Lyme Disease is ruled out.

Please let me know.

Thanks,

Rob
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Postby viper498 » Thu Aug 30, 2007 4:35 am

Rob,

I have had three MRI's, one at onset of my first symptom, on June on 2005 (my first symptom was nystagmus of my right eye). This MRI showed numerous enhancing lesions. My second MRI, on year later, showed no enhancing lesions and just a few diminishing plaques, my third MRI was in early part of this year and it had even more enhancing lesions that my first MRI, and it had quite a few. That was depressing.

My Spinal fluid had shown protein, which is apparently a positive biomarker for MS.

I had started taking Rebif about a month after June 2005. I stuck with it for nearly a year and then stopped. I didn't start taking it again until early this year due to the new relapse after my sinus/ear infection. I stopped again, mainly because I ran out, but also because I started minocycline and wanted to see if it, alone, would make a difference. There are so many people on this site that know so much. If you don't know already, this is probably the best site, IMO, for information, and support. The people here are really great.

Best Regards,
Brock
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Postby Loobie » Thu Aug 30, 2007 4:35 am

One piece of general information on sinus infections if I may. I used to get them 2-4 times per year. To me that's very frequently. My Dr. said that it could have been due to many things, but our sinuses are so wrinkly and there are so many pockets where nasties can hide out. So his theory is that some people are more prone to them simply by the "configuration" of their sinuses. I started using a NETI pot about 8 years ago and have had only 1 sinus infection since I started using it. It is basically a nasal rinising pot that allows you to run 2 cups of mild saline through your entire sinuses as often as you like. It cleans them out and also moisturizes them and is great relief in the dry winter.

I think the website is himalayaninstitute.org, but I couldn't swear to it. If you google NETI pot and you see something like that, it's where you get them. Mine was only like ten bucks or so and has been excellent preventive maintenance to keep from getting sick. If you get one, make sure you use kosher salt. Table or sea salt burns like a son of a gun, but kosher has no feeling. It's a little weird at first, but after you do it a few times, it's awesome. It's kind of like a little genie lamp and you fill it with the warm salt water, press it to one nostril, tilt your head, and your sinuses fill up with the solution and it comes out your other nostril. I, personally, do it every day for PM and like I said, I really don't have sinus issues anymore.
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Postby Lyon » Thu Aug 30, 2007 6:27 am

Hi Brock,
Have you ever had high liver enzymes when you weren't on Rebif?
Bob
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Postby jimmylegs » Thu Aug 30, 2007 6:51 am

hi all, i'm curious too about the high liver enzymes and the relation to medication, coz mine aren't high according to any tests i've ever had (none too recently) but all i take are vitamins and things like echinacea... i would definitely associate rebif and high liver enzymes, that's why they test your liver enzymes when you take rebif isn't it? my only liver enzyme tests were for baseline info back in the days when i was actually ramping up to take it, but then i changed my mind.
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Postby sojourner » Thu Aug 30, 2007 10:40 am

Sorry if this was posted before, just thought it might fit here:

Liver test abnormalities in multiple sclerosis: Findings from placebo-treated patients

http://www.neurology.org/cgi/content/abstract/67/7/1291
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Postby Chris55 » Thu Aug 30, 2007 10:46 am

Rob--I would stay on the Lyme regimen and go off the steriods for now. Then, see what happens. The steroids will always be there, as will all of the MS meds.

My daughter started out on the Lyme road. I regret she did not stay on it. Experienced great improvements!

Lyme is/was a very controversial subject in the medical community. Much resistence to chronic LD.

My daughter is the one who tried an alternative treatment (strep bacteria) and is no longer on any MS meds.

I wish you the very best in this difficult journey.
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