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Symptoms, No Diagnosis

Hello,
I hope it is okay that I am here! I came here because I have been researching my own symptoms for over 5 years time now and I have only ever come to one possible conclusion based off of that research, my time spent reading other peoples symptoms as well as matching their starting symptoms pre-diagnosis, and an extensive family history of autoimmune diseases. I know nobody here is a doctor, I am curious to see thoughts and opinions on if I should acquire testing and go relatively straightforward into MS testing or not.

Painful itch when warming up with any exertion of energy such as going up or down stairs, or trying to start a workout. Core temp rises, symptoms start. Also when stressed, pants made skin feel painful sting feeling, feels like itchy needles raising through skin during these times. Mostly matches the term dysesthesia.
Fatigue, even through two large cups of coffee feels like I could sleep right after
Headaches, all the time at some points in time, including the beginning at 12 years old, constant headaches for 6 months that was chalked up to being from "stress", headaches came with a left eye blurriness that came and went, then it stayed. Left eye blurry, has progressed a lot in past 7 years or so. Can't read with left eye clearly but Right eye perfectly clear.
Aching legs/knees to where I can't move from my bed
Leg/foot numbness
Left Eye burns to tears from pain in bright light, rare
Stomach/digestive issues through past few years, including extreme constipation as well as days on end of the opposite.
Loss of appetite almost entirely for months at a time, 300-800 calories per day during these stretches
Restlessness/need to move feeling, sometimes constant to where I cannot sit still or my leg tingles beyond frustration
Drooling/over production of saliva, extreme dry mouth simultaneously.
Mispronouncing words, slurred speech, forgetting mid sentence
Occasional short term memory issues, remembering what was done on a specific day or week is hard at times
Cold under skin feeling
Tested for Lyme, lupus during these symptoms multiple times in past, approximately 4 times minimum for each test since I was 12. I Am 24 now, nearly 25 years old.
Lasts 1to up to 5 or 6 months at a time typically, then am fine for months long stretches,
Mouth numbness while eating at times, facial pain in cheek/jaw region at times, not usually while eating.
Cold rush opposite, rush of warmth throughout body, constant feeling, especially there after eating.
Lower back pain. Stiff back, lower pain straight across back when bending down
Seeing stars/lightheaded/dizziness
Shaking stomach feeling/living inside feeling, crawling sensation almost, points towards dysesthesia feelings.
Left leg goes numb to a level of uncomfortability to where I have to usually get up at times and move my legs to feel normal. Lasts quite a few minutes.
Behind eyes sore when rubbing, pain in eyes.
Bone aches, specifically in shins/legs mostly
Times I'm laying in bed because my lower legs hurt so badly

Consistently feels like was hit by a truck between tiredness and sore/tenderness, usually during a time all symptoms active.
When all symptoms are not active, only a few linger. Slurred speech lingers, I have caught myself completely fumbling on speaking words with 2+ syllables, incorrectly speaking it in terms of I fail to say the whole word until my speech sort of slurs at the midpoint of a word. Another one that lingers while most symptoms shut down is the lightheadedness comes and goes, as well as the memory issues are somewhat present.

My family history, only mothers family is known, but there is extensive autoimmune disease, including my mother with SLE Lupus, Fibromyalgia in my aunt, amongst a few others I cannot name without confirming. I have considered MS as a diagnosis for over 6 years now, but when I found the term dysesthesia to finally be able to describe the way I felt through the symptoms, it pointed me right in the direction.
I have a lot of trouble acquiring any form of reception from a doctor as I am a 24 year old male, I am typically dismissed right away with any time I bring up MS to any one of them. I am unsure how to advocate for testing due to this issue. As well, if anyone has any advice on these issues, as well as if MS should be highly considered or not, it would be highly appreciated. I came here because I saw just how incredible this community is, and I hope to be able to get something done perhaps with the help of some members.

Thanks!

  1. Hi, ! First off, you are welcome here. Whether your diagnosis turns out to be MS or something else, we welcome all individuals interested in or affected by MS.


    It sounds like you have done A LOT of work trying to get answers and I am sorry you are still without a firm diagnosis at this time.


    You mentioned that you have been tested multiple times Lyme and Lupus. Those are two conditions that can mimic MS symptoms and I am glad that those have been ruled out for now.


    It definitely sounds like something is going on in your body that needs to be properly addressed. I am so sorry you are getting pushback from medical professionals, as your symptoms are not minor and I always tell our community members, "No one knows your body like you do. If you think something is up, most likely, SOMETHING is UP." Please don't quite advocating for yourself. With the right physician, being diagnosed with MS doesn't have to be an especially long and drawn out process. A good physician will generally use a battery of tests to reach a diagnosis of MS and you can read more about those tests here -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis. Also, while you have already been tested for Lyme and Lupus, here is a list of other conditions that doctors will want to rule out, as they frequently have similar symptoms to MS -- https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions.


    Two tests that can be important when diagnosing MS are the MRI and the lumbar puncture. An MRI can be helpful at spotting lesion activity in the CNS (central nervous system). The lumbar puncture is helpful when the MRI results are inconclusive or if an individual is unable to have and MRI.


    Some of the tests for MS are relatively non-invasive and not overly expensive, although the MRI and lumbar puncture can be more involved and more costly, depending on your insurance.


    Again, please keep advocating for yourself and your health. If you feel like you are getting nowhere with your current medical care, you have every right to seek or second (or third!) opinion! If you go in armed with what specific tests you think should be done, you may be able to get a physician to listen. Have you shared your list of symptoms with your doctor? It's very thorough and detailed and should be taken into consideration. Your age and gender are no reason for a physician to dismiss your concerns.


    I know it can be tiring to have to keep pushing for answers, but I hope your persistence pays off and that you are able to get a clear diagnosis AND treatment options!


    Keep us posted, if you feel comfortable doing so!


    Best, Erin, MultipleSclerosis.net Team Member.

    1. Thank you so much for your reply. The other conditions to rule out page will help me TREMENDOUSLY! I have been searching for a new primary to hopefully help address some testing concerns at the minimum, and the MRI was the first step, if I can acquire a more receptive doctor. I am quite fearful of a lumbar puncture, but I know it must be done as well.
      In terms of sharing symptoms, I have actually sent, through the email messaging system, this exact full list to my doctor and the only symptom he would look into was my appetite problems during my active symptom period. It was hard and stressful due to the sole fact I had felt so down and out from everything going on. I'm hoping the doctor I switch to is better, but the reviews for her online are fantastic. My first concerns shared will be this list and getting tested! As I said before, thank you so much for your reply, and the list of other conditions will help me more than you know!

  2. I agree with what Erin said get an MRI. You could make diet changes to to see if that helps relieve your symptoms.

    1. I can try that again, though it doesn't usually seem to help. That is what the doctor said last time I went in, probably 5 months ago, with no change. The symptoms passed on their own after a LONG 4-5 months timeframe. I'm typically a healthy lifestyle person, no drinking or drugs, exercise, etc, I go to the gym, except during these symptoms, all I feel I can do is slug around and sleep. The MRI will definitely be requested! Thank you for the reply!

  3. No worries Bman touch base again and let us know how you get on after the MRI.

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