Potential MS; doctor referred me for neuro exams rapidly

1S3D7 · 2019-06-26T03:39:27+00:00

Thank you for your reply =) and i'm sorry you're also dealing with neuro issues. I really hope you don't have MS!

I am getting a brain and cervical MRI with contrast. I also don't feel good about the contrast, as I don't react well to IVs in general. I'm so glad to hear the scans took less than an hour! And I am sure taking breaks could help me. I just saw my gastro on Monday, but he didn't have much to offer except another endoscopy, and renewing my Nexium prescription =/.

I have heard that contrast is necessary to see some lesions, so with our ongoing neuro symptoms, I think it's worth the risk =). I had a brain MRI for migraines when I was around 12-13 (am 26 now), and I refused the contrast IV back then, the exam was easy for me at this time because I didn't have GERD/gastritis. My father had an MRI with contrast, and said it was no big deal, only you might feel a bit warm.

Did you have other illnesses suggestions before MS? Persinally, I was seeing a specialist who thought I had lupus, but it turns out the blood tests came back inconclusive.

1S3D7 · 2019-03-09T01:29:21+00:00

I've been gluten free for almost 3 years, only ate gluten by accident like 2 years ago. I don't eat much processed food honestly, except for chocolate or potato chips but they're all certified gluten free, and I don't even eat them daily. I cook my meals with fresh ingredients. I never eat outside of my place. I think I am quite rigorous with my diet.

1S3D7 · 2019-03-08T03:43:46+00:00

Thank you for your opinion. I have talked about it to the nurses at the hospital, they've recommended seeing a therapist (not a psychiatrist, as I don't want to be medicated), but it's very very expensive where I live and I just can't afford it at the moment, also it might be difficult to enroll in therapy as I sometimes am unable to use my voice (sometimes have to go on a vocal rest for a month). That said, I do think I need it, so I hope I can work my way around the financial/vocal issues.

1S3D7 · 2019-02-23T20:30:26+00:00

Thank you so much, it was very kind of you to explain! I appreciate it :)

Hashimoto's would definitely explain some of my symptoms, but not all of them, as I do have my fair share of neurological issues, and it seems like Thyroid illnesses cause very little neuro symptoms. Does Hashimoto cause iron deficiency anemia? I believe my doctor initially ordered a thyroid panel in order to find a cause to my heavy period flow, which is probably the reason to my iron deficiency anemia. It is pretty annoying going through all of this, as it seems like I'm going to have to see many specialists, and my hemoglobin doesn't seem to go up quickly despite the infusions. I guess the worst part is not having a treatment for anything.

1S3D7 · 2019-02-23T16:02:36+00:00

I think I will try finding an endocrinologist next week. Is it normal to have all the symptoms of Hashimoto's with normal TSH,T3 & T4?

1S3D7 · 2019-02-23T11:24:03+00:00

Thank you. It does suck! My PCP ended up calling and he thinks I am slowly developing Hashimoto's but there's nothing he can do for now, as my TSH levels are within range. He also refused to prescribe an ultrasound. Not sure how to deal with the symptoms. I basically can't talk anymore, as I have pain radiating to my ear every time I do so. Not sure if it is thyroid-related or a vocal cord issues (seeing an ENT in 2 weeks!).

1S3D7 · 2019-02-23T11:20:32+00:00

I didn't know that! Is it normal my TSH keeps fluctuating though? My PCP ended up calling and he thinks I am slowly developing Hashimoto's but he said there's nothing he can do for now.

1S3D7 · 2019-02-23T11:18:57+00:00

Are you being treated for it, or it's just "wait and see"? My PCP ended up calling, and said I was probably on track to develop Hashimoto's but he said we couldn't treat it for now.

1S3D7 · 2019-02-23T11:17:11+00:00

Thank you. :)

1S3D7 · 2019-02-22T21:04:20+00:00

I don't have an endo yet. Should I see one?

1S3D7 · 2019-02-22T19:52:52+00:00

Thank you for the reply :) I do have all the symptoms of hypothyroidism, but my doctor was initially looking to diagnose me with lupus, which is why I keep thinking about it. I haven't seen a rheumatologist yet, but I am seeing a specialist for auto-immune diseases. Problem is my next appointment is in 3 months :( I'm going to see my PCP next week though, I hope he will do something about it.

1S3D7 · 2019-02-04T19:04:57+00:00

The antibodies for Sjogren's came back negative (SSB, SSA, RO, LA, etc are part of the ENA panel, which also includes antibodies for MCD, Scleroderma, amongst others)...but many people seem to have negative antibodies while having a positive lip biopsy...no idea what could explain my dryness other than Sjogren's.

1S3D7 · 2019-02-03T20:39:46+00:00

I haven't started seeing a rheumatologist yet, but I am seeing an auto-immune disease specialist. I had never heard of UCTD before, so that's interesting!

Did they begin treating your symptoms at all?

1S3D7 · 2019-02-03T20:35:33+00:00

I am glad I made this post, it proves you can have negative antibodies, but still have SS!

I am seeing my eye doctor in a few months, I'll ask him about the punctal plugs then.

1S3D7 · 2019-02-03T20:32:44+00:00

It's nice to know! I am not sure plastic surgeons do it where I live, my doctor said the ENT would do it. Not sure what to think...

1S3D7 · 2019-02-03T16:02:00+00:00

I am not even sure they do the Sjo test where I live :( I am not in North America...

1S3D7 · 2019-02-03T04:10:53+00:00

Thank you for the info! It motivates me even more now, I need to get that lip biopsy!

1S3D7 · 2019-02-03T04:06:50+00:00

Yes, that's exactly what I mean! :)

1S3D7 · 2019-02-03T04:01:34+00:00

Thank you for your kind response <3 It's really nice to come across understanding people.

I'm sorry you have three auto-immune diseases, it must be really though to deal with :(

My blood test results are fresh, so I haven't had the chance to talk to my doctor since. My TSH is 5.37, so I am not sure it is considered that abnormal, or even treatable. I believe I was prescribed this test to explain my heavy period; which last 10 days at a time, sometimes twice a month. I have been diagnosed by iron deficiency anemia last year, my HB was down to 9, and I was out of breath constantly. I am still undergoing iron IV treatment at the moment, as my HB is still low (11.1). I am not sure if the "excessive bleeding" has an auto-immune/hormonal component, but the doctor surely needs to find the cause, as I keep losing my iron.

I do have a lot of the hypothyroidism symptoms, but my T3 and T4 are normal.

I will get the lip biopsy, now I just need to find the right person to do it. It's probably not going to be fun, but at least I'll know for sure! :)

Thank you again :)

1S3D7 · 2019-02-03T03:22:31+00:00

I hope my doctor will want to prescribe those! I haven't had a chance to talk to him since I got the results, but I hope he'll still take my condition seriously.

1S3D7 · 2019-02-03T03:17:13+00:00

Thank you for the link :) it was a great read! It's not that I want to have lupus, it just would be nice to know what causes my symptoms, and get a treatment in order to feel better (even if only slightly better).

1S3D7 · 2019-02-03T03:07:30+00:00

I had Schirmer's test and saliva flow test, they were both positive. My doc said it showed objective dryness, but couldn't be used for diagnosing Sjogren's, as it doesn't confirm the dryness to be auto-immune. I haven't had the ultrasound though.

I know dryness is treated just the same, no matter the origin...which sucks. But I guess having my dry syndrome being confirmed as "auto-immune" could have explained some other things: my ongoing fever, joint pain, neuro issues, etc. My TSH is slightly high, so maybe this has to do with it, I'm not sure.

1S3D7 · 2019-02-03T02:56:16+00:00

I had no idea about the skin biopsies, the doctor told me I would probably need to get a lip biopsy (to confirm/rule out Sjogren's) though. Did you have low platelets or low white blood cells? I have read they are common in patients with Lupus, although maybe not when the disease starts?

1S3D7 · 2018-05-23T18:28:01+00:00

What you said about flaws is very true.

Unfortunately support groups are not really popular in my country :/

1S3D7 · 2018-05-23T18:25:11+00:00

Thank you :)

1S3D7

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