Recurrent episodes of intense symptoms with no answers - I Need Help

Posted by skizzard @skizzard, Jun 25, 2023

Hi, I'm desperate for some guidance. I have spent many years with worsening symptoms and extremely dismissive doctors, and I really need someone to listen. Apologies for the long post, but I have searched high and low for anything that matches these symptoms and MS is the closest I have ever gotten, so I'm posting in this community. I do not assume at all that I have it, I am just hoping this community might have more experience with these symptoms.

I'm a 26yo female, average weight.

For the past several years I've been having these strange, overwhelming "episodes" of pain and weakness. In my most recent episode, I had;

- intense shaking and weakness
- trouble staying upright and walking, balance and coordination issues (EX: stumbling when trying to sit down or get into shower)
- difficulty coordinating my fingers (EX: kept 'missing' when I tried to tap my fingers to my thumb, dropped something and kept missing when I tried to pick it up)
- heavy feeling in body
- sweating and severe chills with no fever
- a constant low-grade headache that turned into several hours of blinding pain, to constant low-grade headache again
- extreme soreness and hot feeling in head, neck, and shoulders
- heavy arms
- severe pain and aching in my knees and shins after showering and when trying to sleep
- INTENSE fatigue but having trouble sleeping (EX: can barely wash a few dishes at a time before I have to sit down, exhausted but sometimes can't get more than an hour of sleep in 48 hours, or sometimes I'll sleep for 15+ hours at a time but wake up every 15 minutes feeling confused)
- serious brain fog, some confusion (EX: trouble finishing sentences when speaking with others, forgot my address)
- eyebrow, eyelid, and muscle between nose and mouth kept twitching for hours or even a day or two at a time
- nausea
- total numbness in very fingertip of right hand
- my left eye felt like it was out of focus and appeared slightly more closed than the other, it kind of hurt to look at stuff for too long
- when asked to lay on my back and put each knee to my chest to check for ground pain, it was difficult to lift my legs and I shook

This episode lasted for about 4 days, and was at its worse on the 3rd day. These episodes last anywhere from 2 days to a week or two. Each time it feels like the symptoms are getting worse. I've had maybe 3 or 4 in the last two years. The last two times were so bad that I went to the ER.

These are symptoms that occur almost daily:

- nausea and feeling full only a few bites into each meal
- abnormal fatigue that is having a severe impact on my life (EX: I cannot hold a job and have failed out of school multiple times because of sleeping issues, constantly miss important events because I am too tired to get up)
- periods of mild to moderate weakness and shaking
- pins and needles in various spots of the body
- extremely frigid, clammy hands that get stiff and painful when exposed to any temperature even slightly below average (EX: difficult and painful to write, draw, etc)
- almost every time I finish peeing I feel like I still need to pee but nothing comes out, and then I need to pee again like 20 minutes later
- recurrent mild UTIs
- recurrent mild earaches
- just overall random pains, aches, and sudden stabbing pains in random spots all around the body that are too numerous and often to be normal but too shortlived to be a genuine problem that I can get my doctor to actually look at. It's like I have a little ball of pain that moves from spot to spot around my body. I always have some kind of pain going on

Brand new symptoms:
- my nailbeds are totally white with a streaky red band at the top
- my nails are now slowly lifting from the nailbed
- patches of my arm and thigh feel like rubber, like I'm losing sensation there
- my hearing seems to be going out

Twice during these episodes I had bloodwork taken and both times they were abnormal in terms of high WBC, neutrophils, and monocytes, but it always goes back down after a few weeks. I've had bacterial blood cultures taken both times and have had nothing show.

I was sent to the hematologist last year who tested for rheumatoid markers, mono, and other stuff. Apparently all tests came back fine. He didn't bother explaining what he had me tested for or what the results were. By the time I saw him the episode had ended and my symptoms were mostly gone. My routine bloodwork was mostly back to normal. He was extremely dismissive, interrupted me multiple times as I tried to explain my symptoms, didn't even look at the photos I'd brought of my toes and fingers going completely white and bloodless. He was insistent I have mono and rolled his eyes at me when he asked if I drank or slept around a lot and I told him no. Overall it went nowhere.

I keep getting told that something is "probably wrong" but I don't seem to be in any immediate danger and to "get it followed up on" but nobody actually does anything. I have an incredibly difficult time standing up for myself with doctors because they have been so dismissive, downright hurtful, or sexist. I struggled with depression in the past and am used to having everything blamed on that. I had to fight tooth and nail just to get the doctor to give me paperwork for the bloodwork (whose results sent me to the ER and then to the hematologist). When I went to the ER this time I had to bring my roommate to advocate for me. If she hadn't stepped in and told them that she was extremely concerned for me because of how drastically I'd changed during this episode, they would have sent me home.

I honestly feel crazy sometimes, like it's all in my head. But it's really ruining my life.

My questions are:
- am I overreacting?
- does this sound familiar to anyone else?
- How do I express the severity of these symptoms to doctors that have a long history of dismissing me?
- What issues might mimic these symptoms?
- What tests should I be asking for to rule out other issues, and what tests should I be asking for to rule out MS?

I understand nobody can diagnose me online, but I am just looking for someone to listen.

I would very much appreciate any help at all, if anyone has time. It would genuinely really mean a lot to me. Thank you so so much.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@skizzard

I very much appreciate everyone's comments. I finally went to a new doctor (my family doctor left the country and apparently isn't coming back) and she watched me move my hands and immediately told me she was sending a priority referral to a neurologist. To be quite honest it was such a relief to be listened to that I almost cried, haha.

I'm wondering if anyone has any advice for meeting with the neurologist, or if I should make another post. I'm a bit afraid that what happened with the hematologist (extremely dismissive, wouldn't even let me tell him my symptoms) will happen with the neurologist. I'm afraid of ending up "outside of the loop" again and having to start from square one or wait until things get worse. I'm really frustrated with having one doctor tell me that something is awfully wrong with me and then have the next tell me it's probably a red herring or false positive.

I've heard a variety of things about mentioning illnesses that match up with your symptoms to doctors. I've heard that it can help them get an overall picture if you're experiencing a lot of different symptoms but I've also heard that doctors can push back pretty hard because they're sick and tired of patients trying to self diagnose, which is very understandable.

I'm almost wondering if I should take a stance that I want to rule everything I possibly can out.

Thanks again everyone, I really appreciate it.

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SS?

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@skizzard I don’t believe you are overreacting at all. Your symptoms are very real and the symptoms are affecting your quality of life and your ability to function.

It looks like you are already recording the symptoms along with the start date and the duration. I suggest that you continue to do this as this will be very helpful to any medical provider that you see.

I’m going to copy an existing discussion that might be helpful for you.

– Your tips on How to Get Off to a Good Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Do you have an appointment with neurology yet?

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@austex

Constant pain is the pits, isn't it? You don't want to mention it because people will think you're crazy, but if you don't mention it, how will it ever be different for you?? Here's a couple of things you might look at:
certainly Multiple Sclerosis, POTS, fibromyalgia, Sporadic Hemiplegia Migraine.
ALL of the things you listed in the first paragraph can be part of the Hemiplegia migraine aura, then the migraine to draw it all together. A migraine like nothing you've ever had before. Non-epileptic seizures could be the shaking, weakness and co-ordination - and that's an aura for the Hemiplegia migraine. Vestibular (eye) drooping and vision changes are in there as well.
It all rather looks like someone might be having a stroke or TIA, but for those of us with HM, we know the difference.
I believe the Mayo Clinic have a really good headache clinic - give them a call - https://connect.mayoclinic.org/discussion/hemiplegia-disorder/

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I agree about looking into migraines and specifically migraine associated vertigo. I would also see a neurologist and ask about fibromyalgia. I would see a movement specialist and ask about movement disorders. Best of luck to you!

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If I were you I would see a Naturopath they actually take the time like over an hour to talk to you about your symptoms and study their notes to come up with some kind of treatment plan. At first its lots of supplements but that ok because you get no bad side effects and only good can come out of those pills. You do however have to pay for all those supplements and the visits yourself as the government health care system is only rigged to sell pharmaceutical drugs. Big Pharma control the health system. I would be in your best interest to explore this path and see how your live can change for the better. Take a chance on alternative care its worth every dollar.

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@skizzard

I very much appreciate everyone's comments. I finally went to a new doctor (my family doctor left the country and apparently isn't coming back) and she watched me move my hands and immediately told me she was sending a priority referral to a neurologist. To be quite honest it was such a relief to be listened to that I almost cried, haha.

I'm wondering if anyone has any advice for meeting with the neurologist, or if I should make another post. I'm a bit afraid that what happened with the hematologist (extremely dismissive, wouldn't even let me tell him my symptoms) will happen with the neurologist. I'm afraid of ending up "outside of the loop" again and having to start from square one or wait until things get worse. I'm really frustrated with having one doctor tell me that something is awfully wrong with me and then have the next tell me it's probably a red herring or false positive.

I've heard a variety of things about mentioning illnesses that match up with your symptoms to doctors. I've heard that it can help them get an overall picture if you're experiencing a lot of different symptoms but I've also heard that doctors can push back pretty hard because they're sick and tired of patients trying to self diagnose, which is very understandable.

I'm almost wondering if I should take a stance that I want to rule everything I possibly can out.

Thanks again everyone, I really appreciate it.

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My neurologist and my Rheumatologist want me to go to specialist as I'm abnormal in a MS test from Mayo Clinic, but bands are within normal range. I had a MRzi without contrast and my white matter is not right and I'm showing infracts and have always had low blood pressure.. MS can cause those.. I also have limited scleroderma with all those symptoms going strong. It can cause infracts as well with damage to the vessels and it can cause small vessel disease.. They both feel they weren't knowledgeable enough and has referred me to that specialist . I'm now waiting to getting an appointment with her. I am having lots of MS symptoms as well. I'm wishing you luck!!

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@taylor05

My neurologist and my Rheumatologist want me to go to specialist as I'm abnormal in a MS test from Mayo Clinic, but bands are within normal range. I had a MRzi without contrast and my white matter is not right and I'm showing infracts and have always had low blood pressure.. MS can cause those.. I also have limited scleroderma with all those symptoms going strong. It can cause infracts as well with damage to the vessels and it can cause small vessel disease.. They both feel they weren't knowledgeable enough and has referred me to that specialist . I'm now waiting to getting an appointment with her. I am having lots of MS symptoms as well. I'm wishing you luck!!

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Welcome, @taylor05. Here a listed of discussions related to multiple sclerosis that may interest you. https://connect.mayoclinic.org/search/discussions/?search=MS

As you prepare for your appointment, are you keeping track of your symptoms, triggers, etc?

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@taylor05

My neurologist and my Rheumatologist want me to go to specialist as I'm abnormal in a MS test from Mayo Clinic, but bands are within normal range. I had a MRzi without contrast and my white matter is not right and I'm showing infracts and have always had low blood pressure.. MS can cause those.. I also have limited scleroderma with all those symptoms going strong. It can cause infracts as well with damage to the vessels and it can cause small vessel disease.. They both feel they weren't knowledgeable enough and has referred me to that specialist . I'm now waiting to getting an appointment with her. I am having lots of MS symptoms as well. I'm wishing you luck!!

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Hello @taylor05

I would like to join @colleenyoung in welcoming you to Mayo Connect. As Colleen suggested, when you see the specialist, it would be a good idea to bring with you a list of your symptoms and any activity that might trigger the symptoms.

Here is an excellent discussion on tips to getting off to a good start with a new doctor. I'd encourage you to read all of the posts and also to watch the video that is in the first post.
--How to get off to the best start with a new specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
I look forward to hearing from you again. Will you continue to post as you have questions or concerns?

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Thank you so much! I definitely will..

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