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Tohnren
01-07-20, 00:33
Guys I'm really struggling to keep my sanity right now. I have a problem with my knees and subluxations. Basically my knee tracks weird and it sometimes pops out of the track and back in causing swelling and pain and usually I fall. I'm 30 now and I've had problems with my knees "popping out" since I was around 12 years old. Briefly in high school I went to physical therapy where they wanted to increase the strength in my quads to help my tracking but I didn't stick with it because it was difficult and I was lazy.

Fast forward to a couple of weeks ago I decided to see an orthopedist about my knees and he prescribed physical therapy. Today was my appointment and the therapist did some strength tests which were fine for the most part but he actually couldn't do one of the strength tests on my left leg because I had what he called "patella apprehension" as I wasn't really letting him do it and would bend my knee back as it felt as though my knee was going to pop out. Then he was doing tracking tests and at one point said "I can even see the atrophy of the Vastus Medialis Oblique (VMO)" when my leg was fully extended. The word atrophy freaked me out and made me immediately think of NMD.

I asked him a few minutes later to explain what he meant because the word Atrophy scared me. He said that atrophy just means the weakness of one muscle compared to the other. In this case the VMO is weaker than the opposing quad muscles which is pulling my knee out of place. I mentioned that I was getting kind of worried about NMD and he mentioned that he wasn't finding any Neuro issues but something about the way he was talking didn't give me a ton of confidence. He was just kind of blowing it off.

I want to believe that because I've had stability issues / quad weakness issues in the past that this is nothing new and totally benign but man my anxiety is through the roof right now and I'm struggling to breathe, honestly.

WiseMonkey
01-07-20, 00:47
When I saw the specialist about my hip he mentioned that the left leg muscles had atrophy compared with the right. My mind did a flip then regained reality, because it makes sense. I'm right handed and (legged) therefore my right gets more use and especially with my left hip because I'm favouring my right. I asked him if this was quite common and he said it was.
Atrophy is to do with the size (and therefore maybe strength). I'm glad you asked him to clarify it for you.

Well that was over a year ago and nothing neurological had happened to me since.

Midnight-mouse
01-07-20, 09:24
I have similar issues with my knees, and the muscle on the inside if my knee area (not a clue what itís called!) is pretty much none existent, itís been that way since I was in my early teens... so a good bit over 10 years now. Itís more to do with us compensating for the issues we have by using other muscles instead to avoid pain and popping out, so others donít get used as much.


Sent from my iPhone using Tapatalk

Tohnren
01-07-20, 13:30
Thanks so much for the replies.

I saw my primary doctor today about this and he ran some tests including reflex and strength and said that I had no symptoms of ALS. My left (my more unstable knee) reflexes were actually slightly less responsive than my right so definitely not hyperreflexia. He also told me that he has seen 20-30 ALS patients in his nearly 40 years of practice and that muscular atrophy was more of an advanced symptom. This kind of confused me because in the ALS sticky they mention it's one of the initial symptoms. Trying to take his word for it.

I'm just trying to tell myself that I have had this knee issue since a kid and even back over a decade ago I was told I needed to strengthen the stabilizing muscles in my quad. If this was evidence of a disorder it would have appeared more strongly by now and I would know it. I know it's so irrational to worry about this at all but there's just that little bit of doubt that creeps in and it's so insidious.

Tohnren
01-07-20, 15:19
Now I'm trying not to worry about the pretty dull reflex in my left foot especially compared to my right. But I know I shouldn't.

Tohnren
02-07-20, 14:54
I'm down a rabbit hole right now with neurological worries. I went to see my Dr. the other day about worries with ALS due to the term atrophy mentioned by my physio. He did a reflex test and when he was testing the reflexes on my feet my left foot had a duller response than my right foot. I went home and started worrying about it so I messaged him over the online chart. He said that it was of no concern but I'm still sitting here worrying about it. I tried really hard not to google but eventually I did and I see that asymmetrical reflexes are abnormal and a sign of pathology. So now I'm just feeling awful.

BlueIris
02-07-20, 15:06
Find something else to do instead, maybe?

Tohnren
02-07-20, 22:48
Find something else to do instead, maybe?

I wish I could. This time last year I would be engrossed in a video game or the rulebook of a new board game I had happily bought. Or watching videos on miniature painting techniques. But right now I can't bring myself to do anything. I Just think "what's the point?" I know it's wrong and I hate it but it's where I'm at right now.

Elen
03-07-20, 12:49
Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen

Tohnren
03-07-20, 17:03
Understood Ellen, thanks.

For an update I used one of those JustAnswer online chat services and paid $50 to have the Dr. call me over the phone. I told him my story and he said that asymmetric reflexes were normal and that ALS / MS / some others would start with weakness or pain. The pain comment I assume was referring to other neuromuscular disorders not ALS. I researched the Dr. they assigned me to because I was a bit worried if the whole thing was a scam and I see that he practices family medicine in Florida and is a DO. So I'm trying to feel better about it assuming he's probably checked reflexes many times on people for physicals and check-ups and the like. Just wish I could erase the doubt and get to enjoying my day, a holiday no less! I'm so jealous of other people who don't have this problem and just blissfully believe their doctor.

Tohnren
03-07-20, 23:15
I'm so scared at the moment. I went to a prompt care facility to see another MD and tell them my worries. They did a reflex test and when I asked if I had hyperreflexia he said that for my knees there is a scale 1-2-3-4 and that I was "at least a three." It was bilateral and I asked if he had seen people with 3s and 4s before and he said he had. He wasn't worried but man I'm in a dark pit right now.

Tohnren
04-07-20, 15:35
I just don't know where I go from here now that I've been told I have hyperreflexia. I've requested a neurologist referral.

Tohnren
04-07-20, 21:04
If it aids anyone else looking at this worrying about the same thing I wanted to post the reply I got from r/askdocs:

"Reflex grading can be very subjective. One man's 2 may be another man's 3, and some people have naturally brisk reflexes. It sounds they were similar in both knees, as well. No Babinski or clonus is a good sign. Your urgent care doc didn't seem worried because he's seen a thousand people with stronger than average reflexes. Without other signs or symptoms, it's diagnostic of pretty much nothing.
Your knees have been "popping out" for 18 years? This strongly suggests a congenital variation in musculature and not atrophy.
For what it's worth, if I got your chart I would not be concerned. Please, please try to take a deep breath and relax."

Tohnren
30-09-20, 22:48
Alright, so I just had my initial appointment with the neurologist. He did a very extensive neurological workup and as a result has ordered blood tests, an EMG, and brain and spinal MRIs. The MRIs are next Wednesday but the earliest EMG is not until March. I don't know how I can last half an entire year with this worry. That's an insane wait time.

Truthfully, I had been feeling better up until this appointment because I had no weakness or anything progressing and his wanting to run more tests just makes me worried again. Apparently during the exam he said that I seemed to not have full vibration sensation in my knees. He had a tuning fork that he held up to my knee and asked me to, with my eyes closed, tell him when I didn't feel the vibration anymore. I honestly think I was trying too hard to tell him as soon as I thought it might have stopped and therefore said it too early even though I might have still felt something there. I don't know. Knee reflexes are hyperreflexive but he said that it could be due to the SSRI I take (fluoxetine for a decade and a half at least) or general anxiety or what have you.

He did say that he didn't see the signs of ALS or really even MS but sometimes MS creeps up with minor symptoms, and that he can't say anything definitive without the tests. Really struggling here and not sure what to do.

glassgirlw
01-10-20, 01:36
Truthfully, I had been feeling better up until this appointment because I had no weakness or anything progressing

so, this is the most important sentence I took from your last post. If you truly had something neurological happening, you would have noticed progressive symptoms. A neurological condition doesn’t just start and then go away. Unfortunately it doesn’t matter how many doctors you see and tests you have ran, until you really believe that you don’t have the neuro disease you fear, you won’t be able to get out of this rabbit hole.

Are you doing anything to help with your anxiety?

Tohnren
01-10-20, 05:59
so, this is the most important sentence I took from your last post. If you truly had something neurological happening, you would have noticed progressive symptoms. A neurological condition doesnít just start and then go away. Unfortunately it doesnít matter how many doctors you see and tests you have ran, until you really believe that you donít have the neuro disease you fear, you wonít be able to get out of this rabbit hole.

Are you doing anything to help with your anxiety?

Thanks for the perspective. I'm trying to let it go. If the Neurologist had said he didn't think we needed to run tests or anything I would have gladly dropped it. It's his suggestion to run the tests that has me worried now. There's lots of things, including nothing, that it could be other than ALS of course but I'm just wired to obsess over the worst one. You're probably right regarding the anxiety and I should consider a different medication than Fluoxetine since I'm not sure it's all that effective anymore.

Tohnren
07-10-20, 20:35
I asked about moving my EMG up if possible and turns out they were able to do it for me this Friday! So I'm worried and excited about that. I just got back from the MRIs on cervical spine, thoracic spine, and brain with and without contrast. Having the MRI's done and waiting for the results somehow makes it scarier than not having them done at all. Definitely in a scared place right now but hopeful that this nightmare will possibly be over as soon as next week.

Tohnren
08-10-20, 01:33
This is the worst. I missed a call from the Neurologist this evening about the MRI results. He said on the voice mail that it wasn't urgent but I left him a message to call me back and of course I missed the second call as well. I was told the results wouldn't be ready for two business days and I thought Doctors only call when there is something they found so I'm freaking out.

The second voice mail left was this:
"Hello, this is dr. so-and-so trying to reach you again. I'm sorry, I'm you know, but I'm working intensive care tonight, and it's really busy and but your results are not urgent. So I'll talk with you about those results on Friday when you come in for your test, so, you know, we can do that then, but I you know, if you have questions about a few you can reach me tomorrow at number. I won't be in the office, but at least you can pass me a message along. Otherwise, you know, we'll just discuss results on Friday. Nothing to worry about there we'll talk about them on Friday. Have a good day."

AMomentofClarity
08-10-20, 04:06
You see that you’re digging a deeper and deeper hole right? You go in for tests or online consultation, find an aspect or element to freak out about, go in for more tests, and repeat the cycle over and over. Your have to break the cycle.

Tohnren
08-10-20, 15:47
So the MRI results show no MS or Tumors but I do have a rare thing called a Syrinx in my mid neck. It's a cyst basically that I have probably had since birth. Mine is tiny, 2 mm. It can cause fasciculations, hyperreflexia like what I'm experiencing so it probably explains it. If it gets large enough it can also cause things like loss of function in legs, erectile dysfunction, loss of pain sensation in extremities or loss of feeling of hot and cold.

Thankfully the Neurologist told me that he's seen these in some people over the years and he hasn't seen them get bigger and he hasn't seen one big enough to cause the symptoms described above. A neurosurgeon can drain it with a stint if it gets large enough to cause those problems and loss of functions. So I'm being referred to a neurosurgeon just to get his opinion on it and see how often I should get it checked. Given the size of it and my symptoms the Neurologist said there is no way they'd consider surgery on it right now since that carries risk of damage to the spine.

I'm supposed to avoid heavy lifting or jumping that could possibly damage my spine as this is one way it could get bigger. Kind of sucks because I enjoy weightlifting. Overall though I'm not sure how to take this news. It's good that it isn't something like MS or a Tumor of course, but I'd certainly rather not have to worry about a cyst in my spine either.

Tohnren
09-10-20, 17:53
I'm really getting fed up with this. The EMG did not show signs of ALS / MND. I do have mild carpal tunnel and some neuropathy. Because of the neuropathy neurologist wants me tested for Multiple Myeloma now. I told the Dr. I had been concerned about Multiple Myeloma months earlier due to my HA and already had been tested for it and it was negative. So he went and checked my chart and told me that the tests my Dr. had ran were only one part of the tests for it and that literature suggests you need both parts to determine if you have it or not since one part can miss it on its own. So now I have another 5-7 day wait on those results. This is so mentally exhausting I really assumed this EMG was the last thing he would want me to do.

AMomentofClarity
09-10-20, 21:04
The more tests you do, the more incidental findings will arise, and youíll keep going for more tests. Itís a hellish cycle that all reassurance seekers (myself included) have gone through.

itís part of actively seeking things to worry about, Anxiety 101

Tohnren
09-10-20, 21:21
I know. I didn't want to do more tests. My neurologist is wanting this done, unfortunately. He also wanted me to consider a glucose test for diabetes but I just told him I didn't want to. My AO1C we just checked a few days ago and it was great and Diabetes isn't the worst thing in the world anyway. I'm so ready to be done with this. October is my favorite month of the year and I just want to have a chance to enjoy it.

I selfishly hope the labs work over the weekend and maybe I get this result back early somehow.