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Ongoing neurological problems for a year

In March of 2019 I had some sort of infection with swollen tonsils. Within a month of this I developed vision disturbances, floaters, widespread muscle pain and twitching, shortness of breath, and sleep issues.  I have seen pulmonologists, cardiologists, and neurologists/neuromuscular doctors who are puzzled.

I had an exercise test that was abnormal, but they are unsure why.  Recently I also developed bilateral tendonitis in my rotator cuffs and biceps, again with no answers.  Ive had multiple nerve conduction studies, EMGs, tons of bloodwork, biopsy with no results on what the cause is.

Im only 30. I worried about ALS for a while with the twitching but every EMG is normal, as is the exam (aside from brisk reflexes which can be common).

Hoping someone here can provide advise.
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any opinions?
Helpful - 0
207091 tn?1337709493
Have you had an ANA test done? This looks for autoimmune markers. If it's negative, it doesn't mean there's no autoimmune, but it can help narrow the playing field, so to speak.

One thing that's often overlooked is mold. Could you have mold in your home or workplace? Mold causes such a wide variety of symptoms. You can buy a home test at most hardware stores. It might not be as accurate as having a professional come in, but it's a lot cheaper, and if it's negative for it, you can move on.

I'd also wonder about any nutritional deficiencies. Have you had any testing like that done?

What kind of thyroid testing did you have done?
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Avatar universal
I have had a full Rheum workup including ANA/CRP and autoimmune panel with normal results.  All the nutritional tests were fine; thyroid numbers were "normal" but right at the low end of the range so recently started thyroid meds for this.  I havent looked into mold but can check for that!  I found out that I have bilateral torn labrums as well, but ortho is not sure the cause - He mentioned a possible collagen vascular disorder as well.
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4 Comments
Oh ouch on the labrum tears. I had one torn, and that's painful stuff. I can't imagine two torn at once.

Here's some very brief info on collagen vascular diseases - https://www.healthline.com/health/collagen-vascular-disease Interesting that all your blood work was normal but something is clearly going on.

I don't know if mold could cause that, but it never hurts to check any of that.

I'm going to see if I can get some others to post on this - people with more experience in thyroid, etc.

Hang in there!





Thanks so much for your thoughts auntiejessi!
HI I am so sorry to hear about your issues but since collegen issues were mentioned has anyone suggested Ehlers-Danlos Syndrome?
Hi Selma. The one doctor brought it up. The same one who mentioned collagen issues. But that was it and he didn't really give me anything further to go on. No one else in my testing has mentioned it really!
649848 tn?1534633700
Hi... Can you tell us exactly what thyroid tests you had done?  Were there any thyroid antibody tests done?  Many of your symptoms sound thyroid related.  What kind (and dosage) of medication did you get and how long have you been on it?  It takes most thyroid medications 4-6 weeks to reach full potential in your blood and even after that, it can take some time for symptoms to go away.   In addition - usually, the starting dosage isn't the final dosage.  Have you been tested since you started on your medication to see if it's brought your levels up?

What was the "exercise" test you had done?  Was it a cardiac stress test or something else?

Hopefully, someone else will chime in on the shoulder issues... I had both of my shoulders frozen over a couple of year period and that was horribly painful, so I can imagine how yours feel.
Helpful - 0
2 Comments
Hi Barb. Sure, I had these results with range in parenthesis.  TSH of 1.9 (0.45-4.5), T3 of 96 (71-180), T4 of 4.8 (4.5-12), free T4 of 1.4 (1.2-4.9). These were the thyroid tests I had. A holistic doctor gave me WP Thyroid as the regular endos I saw said my levels are fine since they are in the normal range.  It has been about 3 weeks and I am due to get it tested again next week to see if any effect.  I can certianly let you know when I get the results.

The exercise test was a cardiopulmonary exercise test (on a bike). This said I had a low VO2 max, but they cant find out why. The one on the treadmill was normal.

Thanks for your comments and time!
Yeah, your levels were sure in the low part of the ranges.  I get where you're coming from with the regular endos... I'm having similar trouble with mine and I've been hypo/on medications for years.  Have you noticed any improvement in symptoms at all?  What's your dose of WP Thyroid?  Because WP has both T4 and T3 in it, you should see some improvement relatively quickly, if the dosage is high enough, but it's typical to start low and work up slowly.  I would be interested in knowing what your levels are following treatment, but remember, the important thing is how you feel.  

It looks like there weren't any thyroid antibody tests done, so I'd suggest you ask your doctor to order those so you can determine whether you have Hashimoto's Thyroiditis or not.   The antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  It's important to get them both to prevent misdiagnosis.  Hashimoto's is the most common cause of hypothyroidism and if you know you have it, you'll know your thyroid status will continue to decline and you'll have to make periodic changes in your medication dosage.

Are you an athlete?  I did a quick research and the VO2 can be affected by several things.  Perhaps someone who's more familiar will stop in and give some insight.  
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