New - undiagnosed - scared...

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New - undiagnosed - scared...

Postby kw202 » Fri Nov 20, 2015 2:10 pm

Hi all,

I posted my basic story over http://www.thisisms.com/forum/undiagnosed-f54/topic27057.html, so I won't repeat it all. But in a nutshell, I've been having numbness in my arms and legs (and part of my torso). Some of this may be unrelated - for instance, I think the pain in my arms is more likely due to a radiculopathy than anything MS, in large part because it's mostly in discrete fingers that relate to specific nerves, but I don't know for sure. At any rate, the arm numbness was the first symptom, but what really got my attention was feet and legs going numb, that's progressed from my feet up my legs, and also around parts of my torso, over the past 4-6 weeks. I'm also being treated for some pain in my hip that's currently being handled by Diclofenac (unclear what the pain is being caused by, MRI suggests some kind of fracture or necrosis, but more tests next week to see which).

Because of the numbness, my ortho ordered an MRI of my spine and called me last night with the radiologist's report, which said I have some lesions that are suggestive of demyelation that is suggestive of MS. And he referred me to an MS neuro specialist, who can't see me until early January. Ironically, as of the last few days - and especially today - I think some feeling is returning to my feet, almost in reverse order. It went soles of both feet - right foot - right calf - left calf - then up both thighs and into my groin/butt a bit (not as bad though). Now, my right toes seem to be feeling more normal than they have in a few weeks, and they were among the first to feel really numb. If they really are improving (I think they are, but I'm hesitant to hope), then that means the numbness peaked last week, and stayed stable for about a week. Hoping that, if I'm really feeling improvement, that it continues dissipating.

I guess I'm just hoping for a kind ear, and pointers to information. Some in the other thread have been very helpful, especially with bloodwork to ask for. I want to bring as much information as I can into the appointment with the MS specialist since it's not happening until early January.

I've been reading around the forum and it's pretty overwhelming.

I'm hoping my ortho, who I'm speaking with later tonight, will order the following for me, based on recommendations from kind people here:

Serum B12
RBC folate
Serum homoceistyne
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance
Antibodies to nerve components (MAG antibody)
Antibodies related to celiac
Lyme
AIDS/HIV
Hepatitis C and B

I'm almost certain I will start some kind of supplement regime, after reading everything here (the Klenner information was especially interesting to me although how to get started, and the idea of shots, seems very overwhelming). But until I get tested to establish a baseline, I don't want to start taking anything. Of course diet and exercise is all important. I've been following a "what works for me" version of the Dr. Fuhrman plan (which is mostly vegetarian, plant-based whole foods, limited starch, limited grain, limited dairy, limited processed or refined anything (including sugar and bread), high on beans/legumes). I'm not following it completely as I still eat some meat every few weeks, and regularly have soy protein, but I stick to the concept of low-meat, low-dairy, plant-forward, non-processed eating pretty well (and have lost almost 100 pounds over the last two years!).

Any thoughts greatly appreciated.

KW
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Re: New - undiagnosed - scared...

Postby lyndacarol » Fri Nov 20, 2015 4:06 pm

kw202 wrote:I'm not following it completely as I still eat some meat every few weeks, and regularly have soy protein, but I stick to the concept of low-meat, low-dairy, plant-forward, non-processed eating pretty well (and have lost almost 100 pounds over the last two years!).
Wow! CONGRATULATIONS!

My concern is that you "regularly have soy protein." Recently, I have become aware of the herbicide, Roundup, manufactured by Monsanto. It is generously applied to crops such as soybeans. I think you can be quite sure that your soy protein contains residues of Roundup (unless the soy has been organically grown – if organic, it is so stated on the label). An ingredient in this herbicide strongly binds up many nutrients (including vitamin B12) and makes the nutrients unavailable to our bodies.

kw202 wrote:I'm hoping my ortho, who I'm speaking with later tonight, will order the following for me
If your ortho is unwilling to order any test for you, request your GP to do so. Start with a thorough vitamin B12 screening. If your GP is not comfortable in this area, request a referral to a hematologist (blood specialist). You are wise to wait on taking supplements until after testing; otherwise, supplements will skew the test results. Get your own copy of the test's actual numbers result. Please keep us posted on how things go.
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Re: New - undiagnosed - scared...

Postby chenman » Sat Nov 21, 2015 4:49 pm

Hi kw202,
first of all I am confident that MS should not stay as scary as it uses to be. After searching on MS causation ("etiology") for more than 20 years (I am an MD and suspected MS for myself in the early 1990s) I am pretty sure that we will be able to do a causal therapy in the forseeable future.

Lyndacarol stresses the vitamin B12 tests, which is mandatory. If the numbness in your feet starts to ?dissipate (without increased B12 intake) I would consider an inflammatory cause which after a while often subsides.
I think neuroborreliosis (the neuro version of Lyme disease) to be an equally important possibility. This can affect both peripheral nerves as well as the CNS. The serological tests are not completely reliable. Therefore your history is of even greater importance.

What seems to be little known is the fact that most patients who are "sero-positive" (that is: they have antibodies against the causal agent, Borrelia burgdorferi) do not remember a tick bite or even the typical EM = erythema migrans ("bull's eye rash"), slowly expanding over weeks, which in itself would be diagnostic without further serological testing. (An EM does not always develop, possibly in less than half of the infections. It may have gone unnoticed if on your back...)

That is: a person can be chronically infected without a tick bite and / or an EM remembered. With good immune defense the infection can stay latent, without symptoms over many years, i.e. a person can become infected as a child and develop first appreciable symptoms as an adult person.
If the "bugs" have reached the CNS in this time span a central neuroborreliosis may develop.

The good message is: all this is easily treated, either completely healed (except permanent neuronal damage which may have developed) or at least stopped, permanently stopped. (I am such a case, and I am well, have been well for years and I am very confident that this will stay that way.)
The nervous system has some repairative possibilities, which may take their time, patience is neccessary.

Your history: can you remember tick bites, an EM (both not a prerequisite for an infection, see above), or ticks on your skin or clothes, at any time, as far as you can look back? (I counsel a patient in California who had several talks with relatives until she remebered a tick at about age 6.)
Such puzzle pieces add to the possibility that you might be chronically infected, as a possible cause for your scary symptoms, and at the same time signaling the chance that such an infection could be cured or stopped with 2-3 weeks of the "acne drug" doxycycline. (Doxy is an antimicrobial on the WHO list of essential drugs, is in use for 50 years, around the world, no surprise unwanted effects to be expected any more.)
Every GP knows it and can prescribe it (patents expired decades ago, dirt cheap...), i.e. for adolecents / young adults with acne, for severe smokers bronchitis, for (suspected) "Lyme", or for healthy people as malaria prophylaxis for certain countries - which demonstrates the very good tolerability, no serious risks. (Not for children, pregnant women during second and third trimenon...; small risk of severe sunburn, which can be avoided by avoiding intense sun exposure during therapy...)

Btw: a recent double blind study from Canada proved high effectiveness of minocycline (very similar to doxycycline) in preventing the transit from a first demyelinating event ("CIS" = clinically isolated syndrome) to the MS diagnosis, i.e. see this report from an MS conference in Barcelona / Spain in October:
http://www.medscape.com/viewarticle/852565
Cool down, the prospects are brighter than you think.
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Re: New - undiagnosed - scared...

Postby kw202 » Mon Nov 23, 2015 6:43 pm

Hello,

First thanks for your answer. I really appreciate the time you took.

Yes, the numbness in my toes and feet, and to a lesser extent in my knees and some parts of my legs, has started to ease. It seems to get slightly better with each passing day and I very much hope that continues. I have not changed anything in terms of supplements etc., so it would seem not to be B12 related.

chenman wrote:Hi kw202,

Your history: can you remember tick bites, an EM (both not a prerequisite for an infection, see above), or ticks on your skin or clothes, at any time, as far as you can look back? (I counsel a patient in California who had several talks with relatives until she remebered a tick at about age 6.)

chenman


Yes, certainly. I grew up in Texas and played outside a lot. I remember one occasion, I don't know how old I was but probably around 10-12, where a tick did in fact bite me and my mom and I had to back it out of my skin (it was removed successfully). I didn't develop a rash, though, that I recall.

My last bloodwork did include a test for Lyme, among other things. I'm awaiting the results.

Best,
KW
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Re: New - undiagnosed - scared...

Postby kw202 » Mon Nov 23, 2015 6:47 pm

lyndacarol wrote:You are wise to wait on taking supplements until after testing; otherwise, supplements will skew the test results. Get your own copy of the test's actual numbers result. Please keep us posted on how things go.


Thank you again. Would you see an issue with me starting to take some supplements as opposed to others, in terms of not affecting my baseline test results? I was thinking perhaps of starting fish oil capsules. That would seem not to interfere with detecting certain vitamin deficiencies, but I'm not really sure.

KW
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Re: New - undiagnosed - scared...

Postby kw202 » Wed Nov 25, 2015 3:32 pm

I posted this also in the other thread, but I just spoke with my ortho on the results of the early round of bloodwork, which was not actually related to MS but related to trying to see if I had some degenerative issue affecting my hip. That was all normal (including Lyme), however I tested out of range for two things: Thyroid, and vitamin D.

My vitamin D was 9.9, which I understand to be really low.

Two thyroid factors -- c-reative protein and c4 complement were "a little high" but I don't have the numbers.

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Re: New - undiagnosed - scared...

Postby chenman » Thu Nov 26, 2015 1:48 pm

kw202 wrote:I posted this also in the other thread, but I just spoke with my ortho on the results of the early round of bloodwork, which was not actually related to MS but related to trying to see if I had some degenerative issue affecting my hip. That was all normal (including Lyme), however I tested out of range for two things: Thyroid, and vitamin D.

My vitamin D was 9.9, which I understand to be really low.

Two thyroid factors -- c-reative protein and c4 complement were "a little high" but I don't have the numbers.

KW

Hi,
CRP is not a "thyroid factor", goole it, Wikipedia...

A note on "Lyme normal": those tests are not very trustworthy. Everyone with some knowledge will admit that there are "sero-negative" borreliosis cases. (I was one of them in the 1990s, have studied this problem in some depth.) Some think the false negatives are rare, others argue that the tests are very unreliable.

After many years of searching and reading and thinking I suspect that the (undisputed) genetic predisposition for MS may include a faint immunological reaction to Borrelia burgdorferi. That would mean:
--- The immune defence against this pathogen is weak, therefore it may reach the CNS more easily, survive there for prolonged time and be able to cause the relatively large MS lesions.
--- The production of antibodies against B.burgdorferi would be impaired, yielding a "negative" test result.

Good textbooks teach that the diagnosis of chronic "Lyme" disease / borreliosis is a clinical one, always with some uncertainty - but that is very common in medicine.
If the suspected diagnosis is ?strong a test therapy is advisable: ca. 2 weeks of doxycycline and see what happens. This drug is well tolerated (i.e. it is used for acne in adolecents, or as malaria prophylaxis for several countries in healthy persons, which underlines the safety of doxycycline), risk is practically negligible, and cost is low.
Best wishes to you,
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Re: New - undiagnosed - scared...

Postby kw202 » Thu Nov 26, 2015 2:04 pm

Would a Lyme test done on spinal fluid be more reliable? My neuro has ordered a spinal tap and I believe that is one of the tests he included.
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Re: New - undiagnosed - scared...

Postby chenman » Thu Nov 26, 2015 4:33 pm

kw202 wrote:Would a Lyme test done on spinal fluid be more reliable? My neuro has ordered a spinal tap and I believe that is one of the tests he included.

They have to do it according to common guidelines.

MS is diagnosed by exclusion, since there is no test / routine to "prove" it. MS may not be diagnosed until "all" possible alternative diagnoses have been "excluded". (B12 deficiency is an important one.)
The most ?problematic / important alternative is late (CNS) neuroborreliosis. It cannot be differentiated clinically. The lesions on MRT on average are larger in MS, but there is complete overlap, no clear ?distinction. (Neuroborreliosis has to be treated completely differently from MS, treatments in some rescpect are ?opposite, contradictory: in a chronic infection it is "contraindicated" to suppress the immune system.)

Neurologists believe that serological testing can do this job, but that is wishful thinking.
They do the tests in CSF, that is routine. If your are sero-negative almost certainly you will be negative in CSF too, as far as I know. This will be a (the?) foundation for an MS diagnosis.
They will not offer the doxycycline (or minocycline) test therapy (I cannot imagine they will), as would be good practice in other disciplines. Most certainly they will "offer" what they call ?baseline therapy = BT. (I am German and am not very familiar with the correct/ proper English terms.)

When will the spinal tap be done? In January?
If I were you I would try to do a doxy test therapy now, in December. However you need a prescription. And there should be a doc who explains things to you, answers questions. (On the other hand: malaria prophylaxis is done while people travel, even in remote areas without a doctor anywhere near...)

You can wait until January. Standard recommendation in discussion boards is to take time in deciding what to do after a final MS diagnosis (BT...?). MS typically is a very chronic disease, a month more or less normally is of minor relevance.
Do you have a good GP, someone you trust in? You could print out the medscape article of Oct.13 and discuss matters with him.
(And perhaps this abstract: http://www.ncbi.nlm.nih.gov/pubmed/11787831 ? It is quite special... You have to decide, know your docs.)

Good luck to you,
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Re: New - undiagnosed - scared...

Postby kw202 » Tue Dec 01, 2015 2:05 pm

Finally got the actual blood test values. Posting here in case someone has any observations...

Protein Electro.,S


Test Low Normal High Reference Range Units
A/G Ratio 1.1 0.7-2.0 1
Globulin, Total 3.3 2.0-4.5 g/dL
M-Spike Not Observed Not Observed
Gamma Globulin 0.9 0.5-1.6 g/dL
Beta Globulin 1.3 0.6-1.3 g/dL
Alpha-2-Globulin 0.8 0.4-1.2 g/dL
Alpha-1-Globulin 0.3 0.1-0.4 g/dL
Albumin 3.7 3.2-5.6 g/dL

Complement C4, Serum


Test Low Normal High Reference Range Units
Complement C4, Serum 40 9-36 mg/dL Adult

Tsh


Test Low Normal High Reference Range Units
Tsh 1.830 0.450-4.500 uIU/mL

Sedimentation Rate-Westergren


Test Low Normal High Reference Range Units
Sedimentation Rate-Westergren 17 0-32 mm/hr

Rheumatoid Arthritis Factor


Test Low Normal High Reference Range Units
Ra Latex Turbid. 8.2 0.0-13.9 IU/mL

C-Reactive Protein, Quant


Test Low Normal High Reference Range Units
C-Reactive Protein, Quant 5.5 0.0-4.9 mg/L

Hla B 27 Disease Association


Test Low Normal High Reference Range Units
Hla-B27 Negative

Cbc/Diff Ambiguous Default


Test Low Normal High Reference Range Units
Wbc 6.0 3.4-10.8 x10E3/uL
Rbc 4.01 3.77-5.28 x10E6/uL
Hemoglobin 12.3 11.1-15.9 g/dL
Hematocrit 37.5 34.0-46.6 %
Mcv 94 79-97 fL
Mch 30.7 26.6-33.0 pg
Mchc 32.8 31.5-35.7 g/dL
Rdw 13.6 12.3-15.4 %
Platelets 260 150-379 x10E3/uL
Neutrophils 60 %
Lymphs 27 %
Monocytes 9 %
Eos 3 %
Basos 1 %
Neutrophils (Absolute) 3.7 1.4-7.0 x10E3/uL
Lymphs (Absolute) 1.6 0.7-3.1 x10E3/uL
Monocytes(Absolute) 0.5 0.1-0.9 x10E3/uL
Eos (Absolute) 0.2 0.0-0.4 x10E3/uL
Baso (Absolute) 0.0 0.0-0.2 x10E3/uL
Immature Granulocytes 0 %
Immature Grans (Abs) 0.0 0.0-0.1 x10E3/uL

Comp. Metabolic Panel (14)


Test Low Normal High Reference Range Units
Glucose, Serum 84 65-99 mg/dL
Bun 12 6-24 mg/dL
Creatinine, Serum 0.74 0.57-1.00 mg/dL
Egfr If Nonafricn Am 100 >59 mL/min/1.73
Egfr If Africn Am 115 >59 mL/min/1.73
Bun/Creatinine Ratio 16 9-23 1
Sodium, Serum 138 134-144 mmol/L
Potassium, Serum 4.1 3.5-5.2 mmol/L
Chloride, Serum 102 97-108 mmol/L
Carbon Dioxide, Total 21 18-29 mmol/L
Calcium, Serum 8.7 8.7-10.2 mg/dL
Protein, Total, Serum 7.0 6.0-8.5 g/dL
Albumin, Serum 4.2 3.5-5.5 g/dL
Globulin, Total 2.8 1.5-4.5 g/dL
A/G Ratio 1.5 1.1-2.5 1
Bilirubin, Total 0.6 0.0-1.2 mg/dL
Alkaline Phosphatase, S 84 39-117 IU/L
Ast (Sgot) 16 0-40 IU/L
Alt (Sgpt) 10 0-32 IU/L

Hepatic Function Panel (7)


Test Low Normal High Reference Range Units
Bilirubin, Direct 0.16 0.00-0.40 mg/dL

Testosterone,Free And Total


Test Low Normal High Reference Range Units
Testosterone, Serum 36 8-48 ng/dL
Free Testosterone(Direct) 2.8 0.0-4.2 pg/mL

Vitamin D, 25-Hydroxy


Test Low Normal High Reference Range Units
Vitamin D, 25-Hydroxy 9.9 30.0-100.0 ng/mL

Triiodothyronine,Free,Serum


Test Low Normal High Reference Range Units
Triiodothyronine,Free,Serum 4.6 2.0-4.4 pg/mL

Antinuclear Antibodies Direct


Test Low Normal High Reference Range Units
Ana Direct Negative Negative

Ccp Antibodies Igg/Iga


Test Low Normal High Reference Range Units
Ccp Antibodies Igg/Iga 5 0-19 units

Lyme, Total Ab Test/Reflex


Test Low Normal High Reference Range Units
Lyme Igg/Igm Ab <0.91 0.00-0.90
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Re: New - undiagnosed - scared...

Postby lyndacarol » Tue Dec 01, 2015 2:50 pm

kw202 wrote:Finally got the actual blood test values. Posting here in case someone has any observations...

Cbc/Diff Ambiguous Default


Test Low Normal High Reference Range Units
Wbc 6.0 3.4-10.8 x10E3/uL
Rbc 4.01 3.77-5.28 x10E6/uL
Hemoglobin 12.3 11.1-15.9 g/dL
Hematocrit 37.5 34.0-46.6 %
Mcv 94 79-97 fL
Mch 30.7 26.6-33.0 pg
Mchc 32.8 31.5-35.7 g/dL
Rdw 13.6 12.3-15.4 %
Platelets 260 150-379 x10E3/uL
Neutrophils 60 %
Lymphs 27 %
Monocytes 9 %
Eos 3 %
Basos 1 %
Neutrophils (Absolute) 3.7 1.4-7.0 x10E3/uL
Lymphs (Absolute) 1.6 0.7-3.1 x10E3/uL
Monocytes(Absolute) 0.5 0.1-0.9 x10E3/uL
Eos (Absolute) 0.2 0.0-0.4 x10E3/uL
Baso (Absolute) 0.0 0.0-0.2 x10E3/uL
Immature Granulocytes 0 %
Immature Grans (Abs) 0.0 0.0-0.1 x10E3/uL
Please recall that I have no medical background. These are my observations on just a couple items:

In your complete blood count (CBC), your MCV (Mean Corpuscular Volume) has a value of 94 (with the reference range of 79-97 fL). A number at the high-end of the reference range indicates enlarged red blood cells (macrocytic anemia). Your number is still in the reference range so there was probably no comment from your doctor.

(By the way, macrocytic anemia is a late stage development of vitamin B12 deficiency.) I see no testing related to B12. On November 26, you mentioned that your "neuro has ordered a spinal tap" – the spinal fluid can be tested for B12, if your neuro would order it.

And… I wonder if it was a fasting serum glucose test. (I assume it was; 84 seemed a little high for fasting, to me.)
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Re: New - undiagnosed - scared...

Postby kw202 » Tue Dec 01, 2015 3:00 pm

Yup. It was fasting. But I'm also very overweight, even after all the weight loss I've done. Not sure if that would impact or not.

Thank you for the observation! B12 has been ordered as part of the spinal tap, which should be next week.

I mentioned in another thread that I've been ordered a 50000 IU weekly dose of D2, the first of which I took yesterday. (Since it works out to about 7100 IU/day and D2 is a weaker form, and I also weigh about 310 pounds, I decided to also supplement with another 3000 IU of D3 daily on my own) - and I have to say, I can tell I have more energy today. I have a very high-stress job and I just figured the fatigue was part of life.

Looking forward to how I'll feel when I get my D levels up to where they should be.
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Re: New - undiagnosed - scared...

Postby kw202 » Mon Dec 07, 2015 11:02 am

Just had my spinal tap done (and also folate and b12 level test). It wasn't nearly as bad as I thought it would be - I had almost no pain and the nerve zaps in my butt mostly made me laugh (I can truly say it was a pain in the butt) - but I can definitely think of a million better ways to spend a morning. :)
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Re: New - undiagnosed - scared...

Postby NHE » Tue Dec 08, 2015 2:02 am

kw202 wrote:Just had my spinal tap done (and also folate and b12 level test). It wasn't nearly as bad as I thought it would be - I had almost no pain and the nerve zaps in my butt mostly made me laugh (I can truly say it was a pain in the butt) - but I can definitely think of a million better ways to spend a morning. :)

It's good to hear that you didn't get the post-tap headache.
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Re: New - undiagnosed - scared...

Postby kw202 » Wed Dec 09, 2015 12:33 pm

All right, I have my B12 result, and today I had a follow up appointment with my neuro to go over results of my newest (with contrast) MRIs. My brain MRI has a couple of lesions, including the "Dawson's fingers" he said is characteristic of MS. (This is in addition to other lesions on my cspine and tspine). My spinal tap results aren't back yet but he advised me to prepare for a MS diagnosis. And he put me on a course of oral steroids, hoping to speed up my recovery from the leg heaviness/numbness I've been experiencing.

My B12 is low. I stupidly walked out of his office without a copy of the results, but he said my B12 was around 200 (on a scale where I think 200+ is normal); he told me people with neurological symptoms shouldn't go below 600, for what that's worth.

I'm going to see my GP tomorrow, it's supposed to be for a B12 shot - but maybe first I should ask her to order more B12 tests. I asked my neurologist today if he thought my lesions could be caused by B12 but he waved me off because he said B12 deficiency "doesn't cause brain lesions." So I'm back here, asking for some advice.

IS this true? Are supplemental B12 tests just worthless at this point? If not, what other tests should I be asking for related to B12?
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