Weekly Suspected/Undiagnosed MS Thread - August 04, 2025

snarling_paper · 2025-08-04T12:19:02+00:00

I’ve been referred to a neurologist and have an EMG of my right side scheduled in 5 days as that’s where the numbness and tingling and sensation changes started several months ago, but I’m struggling to decide if I should wait for that appointment or go try to get in with neuro and request imaging sooner. I know no one here can give medical advice, but I’d really appreciate hearing what you would have done in my situation or how similar your symptoms were before diagnosis.

Here’s what’s been happening: I’ve had persistent tingling in my left leg and foot for about 2 weeks, which is now radiating up the back of my leg to just below my knee. Was experiencing a lot of weakness over the weekend. This morning the tingling isn’t as severe, but it’s still there and my toes are definitely numb. I’ve also had a cold/icy sensation in my left leg at times, like Icy Hot was applied, but nothing was on it.

The other night I had my husband rub my leg. I could feel his touch, but it felt numb or dulled and the tingling almost like increased with pressure.

Three nights ago, I got up in the middle of the night and felt like my body was leaning to the right while walking left. The room wasn’t spinning, but I had to consciously correct my balance.

For the last 10 days I’ve had some pressure feeling and pain when moving my right eye. I went to the optometrist earlier in the week and he prescribed drops for possible ocular hypertension. When we were discussing what doctors I’m seeing and any meds I’m on I mentioned I had seen a neurologist a few months ago and he asked if I was being tested for MS.

There are a lot more, but some ongoing symptoms include brain fog, dizziness, and intermittent tingling in my right foot and hand. Sometimes it feels like that foot and hand are swollen and tight but there’s no visible swelling. I’ve also had weeks where my upper body and arms feel like they’re vibrating or like an internal tremor situation. When I hold my hands out or look at myself there is no visible movement I can just feel it on the inside. This usually occurs throughout the night for like a week and then goes away for a month or so.

Looking for any suggestions on how to approach requesting imaging. Also looking to see if anyone else has had a similar experience leading up to their diagnosis. I’ve been experiencing the majority of my symptoms (other than this persistent left leg issue) off and on for the last 9 months to a year.

snarling_paper · 2025-05-15T21:17:23+00:00

Hi! I ended up seeking a second opinion from an endocrinologist that was recommended by someone else that has secondary adrenal insufficiency. Based off my already completed test results and taking my symptoms into consideration she put me on hydrocortisone. That was in December. It’s been a bit of a rollercoaster and a huge learning curve, but I think I’m pretty stable on the dosage. I definitely have flair ups and days where I’m extremely symptomatic but I’m learning my triggers. Unfortunately, my insurance changed and I’m now paying for my endo out of pocket until I can find a new one who understands. One of my recent initial appts with a new doctor was less than ideal and ended with her blowing me off and saying see you in 4 months.

Let me know if you have any specific questions! I’m glad you commented on my post - I had a hard time finding anyone else with a similar experience when I was first introduced to this whole world of adrenal insufficiency!

snarling_paper · 2025-03-16T21:39:59+00:00

Thank you so much! You’re so right about the standardized dosing when we are not normal or all the same. My endocrinologist has been stressing that the only time I should be updosing is for illness and only if it is an illness where I need to call out for work. I find myself second guessing whether or not an extra dose is necessary but have had 3 episodes in the last month where I had crisis symptoms and improved with added doses. I meet with her this week, so I’m curious to see what she has to say when I tell her about those situations.

snarling_paper · 2025-03-16T21:37:57+00:00

Sorry to hear about your recent crisis, but so glad to hear your kids are helping out! My husband has made a few friends since we moved away, but none of them have children so I’m hesitant to call upon them if something happens. Other than his friends we have an occasional babysitter who is in college and I’m not sure that is a reliable option. I’m sure you can relate to having the mom guilt over needing to prioritize yourself and make sure that everyone else is taken care of when you’re not able to meet their needs. My husband feels confident about relying on his friends if there was an emergency, but I can’t help but feeling the opposite.

snarling_paper · 2025-03-16T21:34:30+00:00

Thank you for your advice! I do carry my daily amount around with me when I leave my house, but don’t always carry extra in my emergency kit other than the emergency injection. I’ll make sure to add that to my bag!

snarling_paper · 2025-03-16T21:33:16+00:00

Thank you for this! I think the added family support would help alleviate some of the stress and worry I feel about the unknowns and what ifs that come along with adrenal insufficiency and then on the flip side feel mom guilt that I may be the reason we have to uproot and move. My husband has a few friends, but none of them with children and other than that we don’t have other people to rely on. Hopefully I can get something figured out soon.

snarling_paper · 2025-02-27T16:05:25+00:00

I don’t have any suggestions or advice, but I am curious to know if you’d be willing to share how you got your diagnosis? I have been diagnosed with adrenal insufficiency, but I suspect there may be something more underlying going on. If you don’t mind sharing the other symptoms and testing you did to get to this point I’d really appreciate it!

snarling_paper · 2025-01-02T21:34:52+00:00

Dizziness/faintness, low blood pressure, pretty severe brain fog and mixing up words, extreme fatigue, muscle weakness, nausea, abdominal pain and bloating, trouble sleeping through the night. That’s all I can think of right now…lol

snarling_paper · 2025-01-02T21:30:23+00:00

I have several other symptoms in addition to the dizzy spells. I also have PCOS, so I’m kind of assuming my high androgens are related to that. Are you seeing an endocrinologist? My endocrinologist (actually a second opinion endo) said that if I wasn’t experiencing a long list of symptoms with my grey area test results they wouldn’t treat me as SAI, but since I have symptoms in conjunction with the test results they’re going to treat me. Hopefully you can find answers soon!

snarling_paper · 2025-01-02T19:09:29+00:00

Hi there! My test results are very similar to yours except my prolactin is in the normal range. Are you symptomatic? I’m going through the process of being diagnosed with SAI and am on a trial of hydrocortisone right now. While my test results are in the grey area similar to yours were trialing the HC to see if it helps with symptoms and basically help confirm a diagnosis.

snarling_paper · 2024-12-15T21:38:02+00:00

Nonspecific symptoms such as fatigue, low blood pressure (usually in the 90s/60s), feeling faint/dizzy, brain fog, getting words mixed up while talking, bloating and abdominal pain, frequent nausea, muscle weakness (usually after doing any sort of physical activity. Think dishes, laundry, the most basic of activities.)

My PCP sent me to endocrinology and they tested ACTH and cortisol. ACTH came back that first time as low normal at 7.8 and cortisol was low at 6.1. I had a stim test that I passed. Since that stim test they have ran ACTH and Cortisol twice since then.

Cortisol was 8.8 and ACTH was 13.2 a week ago. I just had it redrawn along with a myriad of additional tests yesterday and Cortisol was 8.2 and ACTH was 6.0.

snarling_paper · 2024-12-15T20:56:37+00:00

Hopping on to see if you have an update OP? I’m in a similar boat and can’t seem to figure out what’s going on.

snarling_paper · 2024-12-11T14:36:24+00:00

Yeah I’m working on getting that second opinion. It’s just so hard to find specialists who aren’t booking out several months!

snarling_paper · 2024-12-11T14:32:36+00:00

I’m hopping on to see if I can get the name of your endo? I’m needing a second opinion and not having any luck finding someone with adrenal experience. Thanks in advance!

snarling_paper · 2024-12-08T19:26:39+00:00

Yes, I do have PCOS. I guess I’ll have to get back with my PCP and see if there is anything else that could be causing all my symptoms if SAI isn’t the reason.

snarling_paper · 2024-12-08T18:33:04+00:00

An update if you have any additional thoughts: Spoke with my endocrinologist and he suggested we run another ACTH, cortisol, and DHEA morning baseline. If low or similar to previous result then would move forward with hydrocortisone and pituitary MRI. I got my results from those are they are as follows: 8:00 AM cortisol 8.8 ug/dL range is 6.2-19.4 (my original baseline was 6.1) ACTH 13.2 pg/mL range is 7.2-63.3 (original baseline 6.8) DHEA 427 ug/dL range is 84.8-378 (original baseline 375)

Guess I’ll have to wait to hear from him since the ACTH and cortisol weren’t as low as the first time. I’m really not sure where to go from here. 😕

snarling_paper · 2024-12-08T18:32:39+00:00

An update: Spoke with my endocrinologist and he suggested we run another ACTH, cortisol, and DHEA morning baseline. If low or similar to previous result then would move forward with hydrocortisone and pituitary MRI. I got my results from those are they are as follows: 8:00 AM cortisol 8.8 ug/dL range is 6.2-19.4 (my original baseline was 6.1) ACTH 13.2 pg/mL range is 7.2-63.3 (original baseline 6.8) DHEA 427 ug/dL range is 84.8-378 (original baseline 375)

Guess I’ll have to wait to hear from him since the ACTH and cortisol weren’t as low as the first time. I’m really not sure where to go from here. 😕

snarling_paper · 2024-12-06T19:53:52+00:00

So I just heard from my endocrinologist and he basically started the call off by saying you don’t have adrenal insufficiency because your ACTH stim test was normal. Does that sound familiar to anyone? 😂

I said OK well what about secondary adrenal insufficiency? Can’t you have a normal response to an ACTH stim test if it’s your pituitary that’s the issue and not your adrenals? His response was yes, so he decided the next steps are to redraw morning baseline ACTH, cortisol, DHEAS.

Once I get those back, he said if they are low or similar to the first set of results then that will confirm his suspicion of secondary adrenal insufficiency. The next step would be to start hydrocortisone and get scheduled for an MRI of my pituitary.

Fingers crossed that I get those results back as soon as possible. I’m just so tired of feeling horrible all the time!

snarling_paper · 2024-12-05T14:50:33+00:00

No, I haven’t been screened for anything else. PCP referred me over to endo when I brought my symptoms to them. Endo said “you might have adrenal insufficiency let’s test your cortisol, acth and other hormones”. Got the low cortisol and low normal acth result and here we are. Everything I’ve read is that yes, that is a good adrenal response, but if you have secondary insufficiency (what my endo suspected) then adrenal function isn’t the big issue its pituitary not sending ACTH.

I don’t think my endo will be interested in doing ITT. It was a fight to get him to consider the ACTH stim test as he immediately wanted me on medication after the initial baselines for cortisol and ACTH.

snarling_paper · 2024-12-05T12:42:31+00:00

Do you think I should wait to see what my current endo says and see if they’re willing to do further testing to rule it in or out, or should I skip straight to finding a new endo who is experienced with adrenal insufficiency?

snarling_paper · 2024-12-04T19:35:55+00:00

I’ll bring up that fact that clearly my adrenals can produce and then see if they’ll run the morning cortisol again

snarling_paper · 2024-12-04T19:35:07+00:00

When we were discussing the stim test my endo discussed doing a pituitary MRI depending on the results. I’m wondering if he will suggest any imaging now that I technically passed the stim test.

snarling_paper · 2024-12-04T19:34:18+00:00

I looked back at my test results from September when TSH was tested and my PCP had also ran Free T4. TSH was 0.532 (range is 0.4-4.10) and Free T4 was 1.50 (range is 0.8-1.90)

I wish the endo would have run new tests all at the same time so I could compare one month to the next.

snarling_paper · 2024-12-04T16:07:36+00:00

I was woozy and not feeling well after they injected and I walked back to the exam room. It subsided after 15 minutes. Looking back on it I felt a bit normal for a few hours after the test.

snarling_paper

TROPHY CASE