Getting Angry - Need Advice!

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Getting Angry - Need Advice!

Postby Ireland » Tue Jan 11, 2011 8:37 pm

Greetings all,

I'm 26.

I was diagnosed with MS in 2007, and have had a couple relapses, primarily with difficulty moving (walking around, moving limbs, etc) and chronic pain. I've been taking Copaxone for two and a half years.

On or around November 14th of last year (2010), I started having difficulty breathing. I have had shortness of breath, to the point where it's been nearly impossible to inhale, just exhale, and when breathing in, the sound is similar to a shreaking noise. It lasts for a minute or so, as I struggle to catch my breath and calm myself down. It then goes away. It was happening multiple times a day, with little or no physical exertion, and was doing so for a few weeks. I was off of work for two weeks trying to determine the cause.

I went to several doctor appointments and had a chest x-ray, ECG, bloodwork, etc, all ordered, all came back normal. I visited a hospital in the United States, as well as doctors in Canada, and in both places, the above tests were performed, without any findings. I was referred to a lung specialist, where my PFT test was normal (showing that I do NOT have any kind of asthma), and was then sent for a bronchoscooy (which also came back normal), and then had a CT scan, which showed that I had an enlarged thyroid.

My doctor prescribed me Tegretol in the weeks leading up to the CT, which is an anti-seizure drug. In the last couple weeks, the "attacks" have been few and far between, but still occurring.

I was referred to an ENT specialist, after the CT scan, to discuss the enlarged thyroid. He looked in my throat and said the thyroid/vocal cords/trachea were all normal, contrary to what the CT test had shown. He said there was no way the thyroid was enlarged enough to disturb anything else in that region, and blamed this all on my MS. He said the Tegretol helps with the nerves/neurons that interact with the brain, and that's why it has provided some relief, but not much.

I'm back at square one... and not sure what to do at this point. The ENT did not agree much with the findings of the doctors who did the CT, and I'm not convinced this is MS. Has anyone heard of breathing problems as being a side-effect?

I'm just not sure what to do at this point. Do I go and see another ENT? Do I make an appointment with my MS doctor to see if I'm having another relapse? Is there something else I should do?

My doctors are spinning me around in circles, and I'm not sure who to believe anymore.

Please help.

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Postby lyndacarol » Tue Jan 11, 2011 10:11 pm

Ireland – Since you seem dissatisfied with the results so far, it would seem logical to me to start over. Do you have a GP or internist, someone you trust and feel comfortable working with?

My suggestion always begins with a baseline assessment – a thorough physical exam, a battery of blood tests including cortisol, insulin (this is not the same thing as glucose!), all the thyroid hormones, even vitamin D level and others.

Ask for copies of all your test results; collect them in your own file at home.

Work with your doctor; follow-up on his referrals – I'm not sure another ENT would be the most recent appropriate. If anything, an endocrinologist might be more useful. Good luck.
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Postby jtjdmj » Wed Jan 12, 2011 12:54 pm

U.S. MS person -- I think that at times doctors and diagnosis can be a pain in the ___, but we ALL need to follow up til we're happy with what we've I've never heard of breathing issues being a side effect of MS, but with that said I don't know, I'm not a doctor AND hopefully you have one you trust/feel safe with. I know it's a pain, but breathing is sort of an important part of life, keep going to the doctor (or doctors) until YOU are satisfied with what they've said. GOOD LUCK!
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Postby ikulo » Wed Jan 12, 2011 8:39 pm

Lesions in the brain stem could cause breathing problems. When was your last MRI?
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Postby Ireland » Wed Jan 12, 2011 9:12 pm

My last MRI was in 2007. My family doctor today just ordered another MRI for me. Don't know yet the date/time though.

I got the CT report from my family doctor today. It says directly on the results that i have MODERATE TO MARKED THYROID GLAND AND ENLARGEMENT WITH MINOR TRACHEAL IMPINGEMENT AND EXTENSION TO THE THORACIC INLET.

He referred me to an Endocrinologist and should be able to get in sometime this week.

He told me to be patient. He doesn't seem to think it's my MS. WHICH IS NICE TO HEAR. I like it that my family doctor is trying to help me out.

This is what he told me. You have two nerves that run down your throat, which is where the Thyroid is. My Thyroid is enlarged and it pushing up against the nerves. So that's why i get the larngospasms. The Tegretol is what helps to reduce those spasms.

So either i get my Thyroid out....or get on some meds to shrink it.

Will keep you guys updated.
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Postby jimmylegs » Thu Jan 13, 2011 5:33 am

you could try magnesium. levels are low in ms patients and the normal range is off.

you'll test normal between 0.70 and 1.10 mmol/L but the level should be at least 0.90 mmol/L. personally i can feel the difference when my levels drop down into the 0.80s.

i started taking magnesium on the advice of a pharmacist, for dysphagia. it coincidentally allowed me to breathe properly again, which i have since put down to reduced spasticity of the diaphragm.

correcting suboptimal magnesium status has had a wide array of additional benefits for me, improving everything from pain to anxiety to to muscle spasticity etc.

research has also shown that magnesium increases cerebral blood flow (in sheep).

see my latest post to LoveActually under natural approach for more detail on magnesium.

hope that helps!
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby Cece » Fri Jan 14, 2011 9:53 am

Sorry, I rather feel like an escapee from the CCSVI forum (soon to be returned there after this post) :D

In Dr. Sclafani's thread in the CCSVI forum, he has discussed that often the collaterals (from jugulars that are blocked) run through the thyroid. The thyroid is very vascular-rich and is right in the danger area near the jugulars. There might be an association with CCSVI and thyroid issues.

While getting everything else checked out, I'd also consider getting seen by a CCSVI-knowledgeable IR. Taking care of CCSVI could help with a thyroid problem. CCSVI itself seems to be highly associated with MS. From my own MRV, I have two jugulars with severe stenosis and I also have some breathing issues that my neurologist suggested could be asthma but it doesn't seem to be that. (I run out of breath while reading stories to my kids, I sometimes just have shallow breathing despite being in reasonably fit shape.)
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Postby Ireland » Sat Jan 15, 2011 1:27 pm

My MRI is booked for Feb 18th at 2pm.

I notice I've been coughing more and more especially in the mornings.

Thank you for all your suggestions. I really do appreciate it.

I'm going to see this Endocrinologist very soon. I hope I get an appt right away. I would like to move around more without being so short of breath.

I should be getting my Mg levels checked before i start taking the supplements, right?

Thanks guys!!!
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Postby jimmylegs » Sat Jan 15, 2011 8:28 pm

heya, ya it's ideal if you can get levels checked before supplementing, and check them again after supplementing to test efficacy.

i read your original post again and the enlarged thyroid stood out this time. if you're getting lab tests, request zinc too. also very important and often low in ms patients. the 'normal range', often around 11-20 umol/L, is nonsense - aim for the high teens eg 18-19 umol/L.

also FYI when zinc level goes down, thyroid volume goes up! relevant research:
Hormones (Athens). 2010 Jul-Sep;9(3):263-8.
Relationship between serum zinc levels, thyroid hormones and thyroid volume following successful iodine supplementation.
Ertek S, Cicero AF, Caglar O, Erdogan G.
OBJECTIVE: Zinc is essential for many biochemical processes and also for cell proliferation. Thyroid hormones influence zinc metabolism by affecting zinc absorption and excretion. Additionally, zinc deficiency affects thyroid function. The aim of the present study was to evaluate a possible association of zinc levels with thyroid volume, thyroid hormones and thyroid autoantibody levels in healthy subjects, patients with autoimmune thyroid disease (AITD) and patients with nodular goitre following successful iodine supplementation. This is a cross-sectional study in which 201 subjects who were not under medical treatment and did not have previous thyroid surgery or radio-iodine treatment were evaluated. Seventy patients had nodular goitre, 67 AITD and 64 had normal thyroid. Thyroid volume was calculated by ultrasonographic measurements. Serum free T4, T3, TSH, anti-thyroglobulin and anti-thyroid peroxidase levels were determined by appropriate methodology.

RESULTS: In patients with normal thyroid, zinc levels were significantly positively correlated with free T3 levels (p<0.001). In the nodular goitre group, thyroid volume was negatively correlated with TSH and circulating zinc levels (p=0.014 and p=0.045, respectively). In the AITD group, thyroid autoantibodies and zinc were significantly positively correlated. Multiple regression analysis revealed a significant relationship between thyroid volume and zinc only in the patients with nodular goitre (p=0.043).

CONCLUSION: There was significant correlation of serum zinc levels with thyroid volume in nodular goitre patients, with thyroid autoantibodies in AITD and with free T3 in patients with normal thyroid.

hope that helps too!
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Posts: 11191
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