Please HELP! Confused and scared.

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Please HELP! Confused and scared.

Postby rastus » Wed Jul 11, 2012 10:33 am

Let me start with what has been happening the past few months. Last December I began to experience dry mouth and dry eyes. I also started having tingling and burning in my arms and legs, especially on the left side. I went to my PCP and was tested for Sjogren's. Those test came back negative. Nowithstaning the negative test results, I continued to experience dry mouth, dry eyes and the tingling/burning sensations. I also have experienced stiffness in my left calf. These symptoms continued until late March, when in addition to my previous symptoms, I began to have problems with urinary frequency - I have to go every 3-4 hours now. Due to the neuro symptoms, MS became a concern for me. I went to a neurologist who examined me and ordered an MRI. The scan came back normal. My neurologist told me no MS and good luck. However, just two days ago I began having strange sensations the top of my left foot when I bend my head forward. What is strange is it only seems to happen when I am standing and even then is does not happen every time. Since I knew this could be a bad sign, I contacted my neurologist's office. They had me talk to a PA who told me that since my MRI was clear that my neurologist would likely not recommend any further testing (ie, lumber puncture, etc.). She recommended the "wait and see" approach and stated that even if this did progress, monitoring the situation for a while would not change the final outcome. I am so tired and scared at this point. I am a 41y/o husband and father of 3 young children. My wife really thinks that I am a hypochondriac and that I should believe the doctors. I am just at a loss about what I should do. Any advise would be greatly appreciated. Thanks!
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Wed Jul 11, 2012 1:10 pm

hi and welcome. it's definitely a scary time - trust yourself. one thing that can help is to keep concise records. it's much faster in an appt for a doc to review a short diary of symptoms over say the course of a week, than for you to have time to describe it all on the spot, possibly forgetting to mention key pieces of info.

without a diagnosis, the only other thing i can contribute is to ask you questions about diet/nutrition/lifestyle, to determine if those could be playing a part and contributing to your various symptoms.

once again, welcome to TiMS!
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Re: Please HELP! Confused and scared.

Postby rastus » Wed Jul 11, 2012 1:34 pm

Thank you for your reply! I have to be honest-my diet is not great. I usually often only eat one meal per day, sometimes two. I have an admitted sweet tooth and I certainly wouldn't call my diet low fat. I take no supplements. Strangely enough, I'm not overweight even though I don't exercise regularly.

I just can't figure out why this all seemed to start with dry eyes and mouth. From what I have read these are not common with MS. A least suddenly at the same time.
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Wed Jul 11, 2012 3:25 pm

no probs. yeah i couldn't say why dry eyes and mouth would be presenting symptoms. i'm no diagnostician, all i can do is match up symptoms with possible nutrient solutions. the research i've just started mentions sjogrens but you already know it's not that for you (either that or the diagnostic tests - which i know absolutely nothing about - aren't sensitive enough to pick up indicators in your particular case yet...??? hard to say).

if it presented a chance of resolving some of your symptoms, would you consider making dietary modifications? a lot of diets out there cut entire food categories.. i'm more moderate than that - you'd be more looking at adding nutrient-dense whole foods which might currently be missing from your diet, and putting limits on the less healthy choices.
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Re: Please HELP! Confused and scared.

Postby ScaredofMS » Wed Jul 11, 2012 3:32 pm

Wait and see is the best approach. Thats what I'm doing. I'm not too sure about your dry mouth and eyes symptoms. seems atypical to me.
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Re: Please HELP! Confused and scared.

Postby rastus » Wed Jul 11, 2012 4:05 pm

Yes. I think at this point I'm willing to try whatever it takes. Do you have any recommendations?

I have to tell you that when I was initally tested for Sjogren's, my PCP did say that there was a possiblity that the markers just hadn't had enough time to show up yet. I think that I need to follow up with him and maybe be tested again.
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Wed Jul 11, 2012 4:22 pm

ok good. first let's see a three-day diet diary, including all food drinks snacks etc, for two sample days at work, and one sample day off. if you can be as detailed as possible eg wrt serving sizes etc, that can help me look for gaps and make suggestions. you can give me them day by day because it can take some time to go through. although yours should be easier if you have one to two meals per day.

what i'm going to do in the meantime, is look up the usual nutritional suspects for people with sjogren's, and see where they overlap with the issues seen in ms patients. example #1, vitamin d3:

Abnormal vitamin D3 metabolism in patients with primary Sjögren's syndrome
http://www.ncbi.nlm.nih.gov/pubmed/2173501
"25-OHD3 concentrations were diminished"

if you click through to my signature links, you can find info on suggested blood tests (including the aforementioned 25(OH)D3 - the best serum vit d3 test for our purposes) and recommended target levels. fyi the most recently updated content is in my 'regimen' thread (i edit the very first post to act as a sort of short story before getting into the long version).
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Wed Jul 11, 2012 4:58 pm

i started looking at zinc in sjogren's, not much out there.

found this ocular study, related more to cf than sjogren's (it cites sjogren's syndrome dx criteria), but thought a look at the zinc info would be interesting. upon review, not sure what i think of this study, at all. hello, peer review? anybody home??

"RESULTS—None of the patients had vitamin A deficiency, the median value of serum retinol being 48 µg/dl, range 31-80 µg/dl (normal range 30-80 µg/dl). ... The median value for serum zinc was 14.2 µmol/ l, range 13-81 µmol/l (normal range 8-23 µmol/l) and the median value for retinol binding protein was 36 mg/l, range 13-81 mg/l (normal range 35-58 mg/l)."

that 81 looked off to me, so luckily there's a full text copy available...

Table 1 Values for the variables tested
Serum vitamin A (μg/dl) ........median: 48 ....range: 31–80 ......'normal' range: 30–80
Serum zinc (μmol/l)...............median: 14.2..range: 7.7–58.6....'normal' range: 8–23
Retinol binding protein (mg/l) .median: 36.....range: 13–81.......'normal' range: 35–56

so you can see they took the RBP range and called it the zinc range in the abstract. even the actual study serum zinc range, (7.7-58.6) looks crazy to me. and for that matter, same with the 'normal' range given, 8-23.

in literature i've seen ranges like 11.5-18.5, and (approx) 12.5-24.5. when you look for values in 'healthy controls' they're usually pretty close to 18 umol/L. so by that standard there must have been a whole lot of patients in that study with suboptimal zinc.

i find that one value at the top end of the zinc range (58.6) hard to believe. another example of miscopying perhaps? take this zinc poisoning study for comparison purposes:

Zinc poisoning from excessive denture fixative use masquerading as myelopolyneuropathy and hypocupraemia
http://www.ncbi.nlm.nih.gov/pubmed/21525151
"A 50-year-old man presented with a four-year history of unsteadiness, with recent falls and tingling in his fingers. Neurological examination found an ataxic gait, with a positive Romberg's sign. There was distal wasting and weakness in all four limbs and impaired co-ordination, with pseudoathetosis in the arms... investigations showed an undetectable caeruloplasmin (<0.085 g/L), a very low serum copper (1.1 μmol/L) and a markedly raised serum zinc concentration (36.2 μmol/L)."

take home point being, make sure your zinc level is good, it will support a decent d3 level too. bonus.
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Wed Jul 11, 2012 5:03 pm

more research, this time re fatty acids:

Nutrient intake in women with primary and secondary Sjögren's syndrome
http://www.nature.com/ejcn/journal/v57/ ... 1543a.html
"lower energy-adjusted intake of unsupplemental vitamin C, polyunsaturated fat, linoleic acid, omega-3 fatty acid, and specific other unsaturated fatty acids, in the Sjögren's syndrome group as a whole, relative to controls."
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Re: Please HELP! Confused and scared.

Postby lyndacarol » Wed Jul 11, 2012 6:54 pm

rastus wrote:Let me start with what has been happening the past few months. Last December I began to experience dry mouth and dry eyes. I also started having tingling and burning in my arms and legs, especially on the left side. I went to my PCP and was tested for Sjogren's. Those test came back negative. Nowithstaning the negative test results, I continued to experience dry mouth, dry eyes and the tingling/burning sensations. I also have experienced stiffness in my left calf. These symptoms continued until late March, when in addition to my previous symptoms, I began to have problems with urinary frequency - I have to go every 3-4 hours now. Due to the neuro symptoms, MS became a concern for me. I went to a neurologist who examined me and ordered an MRI. The scan came back normal. My neurologist told me no MS and good luck. However, just two days ago I began having strange sensations the top of my left foot when I bend my head forward. What is strange is it only seems to happen when I am standing and even then is does not happen every time. Since I knew this could be a bad sign, I contacted my neurologist's office. They had me talk to a PA who told me that since my MRI was clear that my neurologist would likely not recommend any further testing (ie, lumber puncture, etc.). She recommended the "wait and see" approach and stated that even if this did progress, monitoring the situation for a while would not change the final outcome. I am so tired and scared at this point. I am a 41y/o husband and father of 3 young children. My wife really thinks that I am a hypochondriac and that I should believe the doctors. I am just at a loss about what I should do. Any advise would be greatly appreciated. Thanks!


First of all, rastus, you are not a hypochondriac; you are not imagining the symptoms.

From my experience: I have had dry eyes all my life. I have never been diagnosed with Sjogren's disease, but this is one of over 80 "autoimmune" diseases (as is MS). It is quite common for a person diagnosed with one of these diseases to develop a second or third one in time. Decades later tingling in my feet moved up my legs, numbness in my face appeared for several months, a feeling of constriction around my left upper arm was there for several months, too. Three MRIs over this time all came back "normal" or clear. My first neurologist told me that it absolutely could not be MS. He was wrong. Even doctors at the Mayo Clinic missed the MS. In time lesions showed up on an MRI and I got the diagnosis of MS (OVER THE PHONE by the neurologist's office staff – this was the second neurologist, which I no longer see!).

Since you asked for any advice, I offer my standard action plan recommendation:

First, take a deep breath. You may not have MS at all. IF you do, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, work with the GP with whom you are most comfortable, who is compassionate and who enjoys being a "disease detective." Begin with a thorough baseline examination including blood tests for your cortisol level, glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, etc. Ask for a copy of all your test results for your own file.

Third, if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. I think that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

All the best to you.
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: Please HELP! Confused and scared.

Postby MarkLavelle » Wed Jul 11, 2012 7:16 pm

It sounds to me like you should see a good spine doctor (mine is a physiatrist, and I strongly recommend finding one near you). The "tell" is that some of your sx are position-dependent...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Wed Jul 11, 2012 7:38 pm

that part sounded a bit like lhermitte's to me, but with nothing showing up on mri, it's definitely an interesting question...
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Re: Please HELP! Confused and scared.

Postby rastus » Wed Jul 11, 2012 8:45 pm

Would you guys press for another MRI, even after only 3 months?
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Re: Please HELP! Confused and scared.

Postby jimmylegs » Thu Jul 12, 2012 4:41 am

depends... what are your wait times like?
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