waiting for confirmation dx with ms

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waiting for confirmation dx with ms

Postby Jen80 » Mon Oct 15, 2012 12:52 pm

I am new to the site and not sure where to post this. I am so frustrated as I have been looking for answers for almost a year. I have told I was thought to have to have MS due to symptoms and 2 lesion found on my brain in August. Then I had a spinal tap, the neurologist said I had Lymes disease and started me on doxycyline and referred me to an infectious disease doc. That doc said I did not have Lyme it sounded more like MS. So I went back to my primary and received 2 referrals nero-surgent and MS specialist at Johns Hopkins (can't get there till Feb). nero-surgent ordered another MRI....This one I have 7 hyperintense lesions in the periventricular and subcortical white matter. Now in August there was 2 now there is 7. I have my own report and the doc has been in surgery and still have not spoke to her, hopefully tomorrow.

With all the clinical symptoms, which I have severe weakness, tremors, severe muscle spasm, bladder and bowel problems, tingling and numbness, walking is getting harder and harder, debilitating fatigue, some vision loss. I have experienced so much more I cant even remember now.

Does this sound like MS? Can a nero-surgent diagnose me and treat me until I am able to get my appointment with the MS specialist at Hopkins.

I have been bounced between so many doctors and I'm getting worse and I can't work right now due to my legs and fatigue.

Any help or suggestions I would love?
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Re: waiting for confirmation dx with ms

Postby lyndacarol » Mon Oct 15, 2012 5:00 pm

Welcome to ThisIsMS, Jen. There are no definite answers for this disease, but we will offer our opinions when asked.

Your list of symptoms COULD be MS, but there are LOTS of other possibilities that your doctor will have to consider and rule out.

There are many members here and almost as many different ideas on this topic. My personal suspicion is that excess insulin is being produced and starting the cascade of MS symptoms. For this reason I encourage everyone to ask his doctor for a "fasting blood insulin test." Too much insulin can cause insulin resistance in the muscles; I think it could be responsible for the symptoms you describe: "severe muscle weakness, tremors, severe muscle spasms, bladder and bowel problems [the muscles around the bladder and intestines], tingling [in my case, I think this comes from the blood vessels – damage to the inside walls and the smooth muscles in the blood vessel walls themselves], walking…" I think your fatigue results from the cells being resistant to insulin and not allowing the insulin to function as the key to open the cell door and permit the energy source to enter.

Since your last sentence asked for any suggestions, I suggest you work with your GP or an endocrinologist and check your insulin level and check for insulin resistance. All the best.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: waiting for confirmation dx with ms

Postby bartman » Mon Oct 15, 2012 5:27 pm

Jen,
If you have a Lyme diagnosis, then you need a Lyme doctor. You are in the wrong forum. You must educate yourself about the controversy of Lyme disease. Have you read Dr. Burrascano's Lyme disease guidelines. Do you know the different opinions on treatment guidelines between ILADS vs. IDSA? Typically, if you have Lyme disease you also have other coinfections like Babesia and Bartonella. I assure you you Hopkins will not treat Lyme correctly, it takes multiple antibiotics for sometimes a very long time to get better and you will get worse before you get better due to a herxheimer reaction which is a reaction to the killing of the bacteria. ait is very complex. However, if you do have these infections which is very likely than MS treatments will make you worse because they are immunosuppresive and will allow the infection to disseminate all over your body. You need to find an LLMD which stands for a Lyme Literate MD.

Have you seen the video Under Our Skin? you can see it on Hulu for free. This is the biggest controversy in medicine and very political. Please do more research and find a Lyme doctor.
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Re: waiting for confirmation dx with ms

Postby jimmylegs » Mon Oct 15, 2012 6:54 pm

welcome jen, has anyone ever sent you for a nutritional assessment?
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Re: waiting for confirmation dx with ms

Postby Jen80 » Mon Oct 15, 2012 7:27 pm

Thank you so much for all the suggestions. I have had 4 rounds of blood work to rule everything else out. Lymes disease was thought and I did go and see LLMD who also said it was not lymes disease. That was when I went to another neurologist who ran a 2nd MRI and 7 lesions were found. This was just last week. In August my first MRI showed only 2 lesions. I'm not sure about my insulin and if that was checked but I assume so since they have been running blood work for a year. Although all my bloodwork has always been normal. I also had a normal spinal tap.
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Re: waiting for confirmation dx with ms

Postby jimmylegs » Mon Oct 15, 2012 8:36 pm

hi jen, re 'normal' blood work, take that with a grain of salt - you might be interested in the first link below (www.thisisms.com/ftopict-2489.html), it gets into the issues with normal range
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Re: waiting for confirmation dx with ms

Postby bartman » Tue Oct 16, 2012 3:41 pm

Let me get this straight. You went to a regular neurologist who diagnosed you with Lyme and gave you doxycycline? What did he base the diagnosis on? Did you have a blood test (ELISA and WB or just ELISA)? This neurologist prescribed the doxy or did the infectious disease doctor prescribe the doxy?
The reason I ask is that it is rare for a neurologist to make the Lyme diagnosis and even more rare to make it on just clinical grounds. If this neurologist made the diagnosis, than for sure he would be able to give you the antibiotics immediately. The problem is did he give you the necessary dose of 400mg a day for long enough which can be months depending on how long you have been sick. Furthermore, did you get tested for coinfections because they need to be treated also.

Is your LLMD reputable? Did he test you for lyme and coinfections? Most lyme doctors draw lots of blood and test for many infections. They are also well aware of how often lyme is misdiagnosed for ms and more likely to treat again clinically.

I'm shocked you had a regular neurologist make a clinical diagnosis of lyme, I'm not shocked he passed you off to the infectious disease doctor who likely didn't treat you properly. In any case, I would call the neurologist that said lyme and ask him for minocycline because that will cover you for both lyme and MS. Minocycline is used very effectively for MS. Just remember minocycline is safe and used long term for pimples.
My cousin was misdiagnosed with MS for 13 years and almost lost his life and has made great improvement with antibiotics since being positive for lyme, bartonella and babesia. So, it might be worth doing a little more testing and/or antibiotics and maybe even a second opinion from a LLMD.
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Re: waiting for confirmation dx with ms

Postby SpectrumFL » Tue Oct 16, 2012 4:02 pm

He based her diagnosis on the spinal tap. They can detect lyme bacteria infecting spinal fluid using that method. The truly astounding nonsense is that the Infectious Disease doctor is basically saying the spinal tap test results are a false positive.

Please be advised Jen - this is strangely common in the Lyme world. Doctors denying it exists because many doctors deny there is any such thing as chronic Lyme disease.

Now why did your LLMD tell you there was no lyme? I have heard of false positives on an ELISA Antibody. I've heard of false positives on a Western Blot. I've even heard of false positives on a Lyme PCR test .... but directly detecting the Lyme spirochettes in cerebral spinal fluid being false positive?
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Re: waiting for confirmation dx with ms

Postby bartman » Tue Oct 16, 2012 4:25 pm

No, I don't think the spinal tap was positive based on what she said that the spinal tap came back normal. I can't imagine she had a positive spinal tap for Lyme and then she had another spinal tap done.

Only 8% of people with neuroborrelliosis test positive via a spinal tap. So, aside from the unreliability and inaccuracy of the ELISA and WB, it is even more difficult to test positive with a spinal tap. If one is positive in a spinal tap, it is a definite. I don't believe she was positive with the tap.
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Re: waiting for confirmation dx with ms

Postby SpectrumFL » Tue Oct 16, 2012 4:42 pm

This is the line that threw me:

"Then I had a spinal tap, the neurologist said I had Lymes disease and started me on doxycyline."

If there were two, then I wonder why she went negative after being positive.

Ill be honest, I went the Lyme route before the MS route (currently awaiting MS Diagnosis too) .... and I often wonder if doing a proper course of Lyme antibiotics might be a worthwhile endeavour for everyone with MS at least at some point.

That would be 400mg Doxycycline for at least 30 days.

If you want to get super thorough with it, Neuro Lyme (which is the condition that nearly matches symptom for symptom with MS - including lesions that are nearly identical) .... would be a regimen of Cephtriaxon IV antibiotics for 30 days followed by Doxy 400mg for 30-60 days.

This regimen is at least a solid attempt at eliminating the first rount of Lyme bacteria (and coinfections). Its assumed that if Chronic Lyme is on the table, more rounds will be needed later, but improvement should be seen quite noticeably after the first round. That might be an indicator.

There are of course numerous Lyme enthusiasts who feel that MS, ALS, and Alzheimer's are just late stage Lyme disease. And there are plenty of people on the Lyme forums yelling at me to get on the antibiotics now before my symptoms get worse.
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Re: waiting for confirmation dx with ms

Postby lyndacarol » Tue Oct 16, 2012 6:00 pm

Jen80 wrote:...I'm not sure about my insulin and if that was checked but I assume so since they have been running blood work for a year. Although all my bloodwork has always been normal. I also had a normal spinal tap.


The fasting blood insulin test has been available since about 1960, but it is not routinely done. Glucose levels are routinely tested, but the test for insulin levels and the test for glucose levels are TWO DIFFERENT tests. The optimum insulin level is 3 UU/ML or below.

It is excess INSULIN that I suspect begins the MS cascade.
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Re: waiting for confirmation dx with ms

Postby Jen80 » Wed Oct 17, 2012 11:02 am

I am sorry for all the confusion. When I had the spinal tap I also had more blood work. Now this is the 4th round of blood work. My neurologist said the spinal tap was normal. However, the serum in my blood work showed lymes and she started me on the Doxy. Yes I was on 400 a day for 30 days, finished the Doxy 2 weeks ago. The LLMD infectious disease doctor who has treated a friend of mine with Lymes said my bloodwork had a small abnormality but it was not Lymes. He reviewed my MRI and then said it look like MS to me. Now I have appointment at Johns hopkins MS center but can't get in till February. Went to a neurosurgeon who ordered 2nd MRI, she called me today and said she really believes it is MS. I had 2 lesions in August now 7 as of last week. So she is trying to get an appointment moved up for me with hopkins or another neurologist in my area.
My legs are getting worse and now I cannot drive. I just want to know already so maybe I can be treated.
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Re: waiting for confirmation dx with ms

Postby jimmylegs » Wed Oct 17, 2012 11:38 am

any nutrition test results in there?
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Re: waiting for confirmation dx with ms

Postby bartman » Wed Oct 17, 2012 4:15 pm

Are you sure you are using an ILADS referred LLMD? There are not many LLMD infectious disease doctors out there, and there are none in Baltimore that I know of assuming thats where you are, based on going to Hopkins. I want to remind you that my cousin was initially diagnosed at Hopkins and then Univ Of MD. They will laugh at you and not even consider Lyme + coinfections. In other words, they are notorious for not believing in Lyme and I can assure you, they will diagnose you with MS. Have you been tested for babesia or bartonella, I personally believe bartonella is the real culprit and it is very difficult to test positive for. Have you been tested for CPN?

Go back to your initial neurologist and beg her for more Doxy or Mino and then find another LLMD. A true LLMD knows 1 month of Doxy is not enough, not even close! Tell her that Minocycline is used for MS and it would ease your mind if you could take that for now.

The reason I am really trying to stress to you to find another doctor is because it is easier to treat when you start early. Time is really of the essence! Again 1 month of antibiotics is nothing and this is the crux of the controversy - read this link about a protest this weekend

http://lymedisease.org/activism/idsa-protest-why.html

MS treatments are opposite of Lyme treatment, it will make you worse.
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