Possible MS and unhelpful Dr.s from VA

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Hi everyone,

I’m hoping to get some feedback to how to proceed with my symptom research and help. I have been receiving treatment from the VA for quite a while, and for a long time, I would tell my doctor about my pain, fatigue, and other issues as they came up, and ignore them when not active. I recently started getting more active in my collection of symptoms and trying to map it out for my doctor, as the symptoms are becoming more and more frequent, but it has not been going too well. I have been to a few specialists, including a Rheumatologist and Neurologist, but keep getting the same answer that nothing is wrong or can’t be identified. I’m trying to balance being an advocate for myself and researching my symptoms, without falling into the Doctor Google trap and falling down a rabbit hole. With that said, many of my symptoms appear to point towards Multiple Sclerosis, but there is no smoking gun either. I can’t tell if I’m being objective and see true signs, or if I am letting myself be steered towards what I am researching.

For a bit of background, I’m a 39 year old male. I’m not overweight, but I’m not in my 20’s anymore either. I was diagnosed with Ulcerative Colitis in 2005 (people with UC are more likely to get MS, even more than other autoimmune diseases). For the last few years (7+), I have been experiencing pretty bad brain fog and extreme fatigue that feels like someone is squeezing my soul and dragging me down to lay down and “sleep” and is so extreme it’s actually painful. I was diagnosed with restless leg syndrome a few years ago and for the last 4 years or so, I’ve also been dealing with body pain; specifically in the front of my thighs (intense burning pain) and forearms (tight aching pain). There isn’t much that will alleviate the pain, but there are things that help me get through it without losing my mind. My hands often get a tight and heavy feeling, and my feet regularly feel like they are in an ice bath and often feel tingly, but not consistently (minutes or hours at a time). My left hand feels tighter and less responsive than before, and I seem to have trouble with smaller objects when I didn’t before (ex. tying my shoes that have thinner laces, buttoning shirts with small buttons, picking up small objects, etc.) and I am far more clumsy than I used to be, dropping things or knocking things over often. I’ve even had my phone slide right out of my hand while I was looking at it. There are times when I feel shaky, almost like the shake when you are extremely hungry, but I’m not really hungry. Other times, I feel like my upper body is vibrating or resonating from inside. I will also get twitches in my fingers randomly, but not often. More frequently, my legs twitch while moving extended. Not usually while walking, but more when I am petting the dog with my foot or similar action; it feels like I just lose control and my leg moves suddenly on its own. My left knee also gives out while walking somewhat often, but not to the point that I fall. It’s not due to pain or anything like that, it just seems to be for no apparent reason. Over the last few years, I have had instances where I lose grip strength and can’t even hold my pen to write, or had my legs get heavy while running and fall. I have a lot of joint and muscle pain, particularly my hips. My left leg is in more pain when I lift it, and at times will drag against the car’s door frame unexpectedly when I get in the car. I can’t lift it as well as my right leg, but usually only by a small margin. I’ve had times where I feel genuine water drops hit my ankles and lower leg, only to find no water in the area and my leg is completely dry. Last year, after complaining about the pain and fatigue, I was diagnosed with secondary hypogonadism (testosterone at 197). I had struggled to even get tested on that initially, and once I did, still took a couple years to actually receive treatment last year (a whole other story). Once I got on the testosterone, I started feeling much better. My pain started to dull, strength started to improve, and even noticed muscle mass coming back to my thighs, which had previously been losing significant muscle. I thought that was the issue for sure, but then once my body started settling from the treatment, the symptoms started returning. Some not as bad, but others just as before. Once diagnosed with secondary hypogonadism, my primary care ordered an MRI to check for tumors or pituitary issues. My pituitary gland looked fine, and there was no sign of why my testosterone was so low, so I was treated with no more investigation. Last year, the Rheumatologist did a Nerve Conduction Study and tested for carpel tunnel and said everything looked fine. I have had a few other symptoms and experiences, however I won’t list them here as I’m not sure of the importance and accuracy, as they were memories of weird things that happened years ago and was reminded by reading symptoms online. I am trying to be very cautious to avoid that rabbit hole.

When I saw the Neurologist last week, I went armed with a page and a half of symptoms printed out so I wouldn’t forget anything. He glanced at the symptoms (I don’t think he really read any of them), let me list off three of them, then asked me a bunch of questions to see if I have Alzheimer’s (I never thought I had it). He said I was fine, and was ready to end the appointment. I brought up MS, as many of my symptoms seem to match with that, among other things. He seemed to get annoyed, then said plainly that I don’t have MS. He pointed to the Nerve Conduction Study, saying the nerves looked fine. When I asked if that would show an issue since MS affects the brain and spinal cord, and not necessarily the nerves in my arms and legs, he got almost angry and told me that I could get hurt if they do a lot of tests on me, saying he’s the doctor. I told him I trust his knowledge, but I know my body and know something isn’t right. I wasn’t asking for more tests, I just need answers. He also showed me my MRI (from 7 months ago) to show no lesions, saying definitively there is no MS, excluding the fact that 5% of people with MS don’t initially show lesions on the MRI. While we were looking at the MRI, he paused and looked deeper at my Cerebellum, then said it looks like I have Cerebellar Atrophy. Then he changed it to Cerebellar Hypoplasia, and kept saying I could have been born that way, and there’s just no way to know. He ended the conversation by saying if I have a neurodegenerative disorder, it will show at some point and I can be treated then.

A few days after the appointment, I was reading at night and my vision seemed off. My left eye was blurry while reading, but wasn’t the night before, or any time before. Distance still looked a little blurry, but not as bad as close up. My right eye was just fine. The next day, I went to the Optometrist to get it checked (they were able to get me in the same day). They did a retinal scan, and there was no sign of Optic Neuritis. I had just had a test performed two months ago, but when she tested my eyes, my reading vision had changed from 1.25 to 2.00. She was confused as to what would cause this, but thought it may have something to do with a slight stigmatism in that eye. I was seeing my primary care doctor the day after, so I told him of the issue and he was also at a loss to explain it, but wasn’t convinced it had anything to do with the stigmatism. He said he would set up an appointment with the Ophthalmologists, but I’m still waiting to hear form them to set up an appointment. My left eye is still blurry for reading.

A day later, I had my wife try the Hoffman’s Sign test on me. Neither of us are in the medical field, so this is just normal people following YouTube and we could very well be doing something wrong, but I had a clear flex of my thumb and index finger, moving closer and actually staying in a “seized” position for about half a second, then releasing back to normal. Each flick after that, it was pretty immediate where they would flex closer to each other and release in one movement. Reading that this is an indicator of a neurological issue, I sent a secure message to my primary care doctor. His response was rather annoying and confusing, saying “Hoffman sign, if positive, can be indicative of central nervous system disease. Your evaluation so far has not revealed central nervous system disease.” Is he not saying the test itself is an indicator? I would think he would at least want to bring me in to have a professional conduct the test.

I would certainly appreciate any feedback from doctors or people who have been in this position before and let me know if I am crazy or just not pushing hard enough for answers. I’ve been dealing with these issues on and off for years, but they seem to be getting more frequent, and I am really hoping for answers. I may be completely off base with MS, and I am completely open to any feedback for things to bring back to my doctor to check. I know I can’t find a diagnosis here, but I’m hoping to find a path to the knowledge for my doctor. I may even spend the money to see a specialist outside the VA if there is some advice that directs me to the right specialist. I know it’s a lot to read, so if you are still reading, thank you, and thank you for any help that can be provided!

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  • Posted

    I should mention I do like my primary care doctor, and when I bring this up to him, he says it could be that, but he would be surprised. I'm not sure what the reluctance is to investigate further, but he says it wouldn't make sense to do another MRI so soon. he knows better than me, so I shouldn't criticize, but I'm done with the pain and no answers.

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