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History of symptoms, possible MS--any input?

Hello all,

I have had a history of strange, inexplicable symptoms. I have searched for years wondering what it could be, have been whitewashed by doctors who each have separate explanations for each symptom, and upon my most recent episode I came across MS in my research and it seems to be the only thing I have found to explain all of my symptoms, which have recently gotten worse. I would just like some knowledgeable input about these symptoms as I am not sure if treatment is worth continued pursuit if it isn't a real possibility.

About six years ago, I experienced a very strange episode of extreme headaches, extreme fatigue, painful muscle spasms in the left side, bowel and bladder problems (constipation, UTIs), cognitive and emotional disturbances, and muscle weakness resulting in an inability to walk without assistance. GP gave me celexa (an anti-depressant), percocet (pain killer), and flexiril (muscle relaxer) in order to manage these symptoms. She determined that I was simply depressed, constipated, had a UTI, and had muscle spasms as a result of tension and stress. She never addressed the muscle weakness other than to imply that it was psycho-somatic, and claimed the fatigue was due to the depression. After about two months, the symptoms subsided, I returned to my normal life, quit my medication, and didn't experience many symptoms at all for about five years other than relatively minor intermittent episodes of bowel/bladder issues, sexual dysfunction, spasms, and fatigue (occurring and subsiding simultaneously, each lasting anywhere from a week to one month). I saw urgent care, emergency room doctors, and went through several GPs (as well as a gastroenterologist, gynecologist, pain and spine, and psychiatrist) to try to find the source of these issues but was never taken very seriously. I had several CT scans that showed no apparent abnormality but was never referred to neurology or MRI. Gynecologist recommended I simply change forms of birth control, gastroenterologist suggested that I have a lower than average ability to "block out" signals coming from the intestines and was merely dehydrated (I drink at least 40 oz of water per day), pain and spine simply gave me baclofen (another muscle relaxer to treat painful spasms), and psychiatrist took me on an adventure of various anti-depressant, anxiolytics, etc.until I gave up on that. I tried to explain that these emotional problems only occurred simultaneously with these other symptoms and were not always present to no avail.

About a year ago, I experienced a slight worsening of vision (blurriness, lack of definition) which I had attributed to a worsening of a congenital (from birth) cataract I had in the left eye. This prompted me to have the cataract removed, not in hopes of improving vision, but in hopes of preventing the cataract from getting worse and impeding vision more. My vision is worse now than it was before the surgery; however, I have no way of verifying whether this was due to the procedure or otherwise. A short time prior to the surgery (but after scheduling the procedure with the surgeon), I had an isolated incident of syncope (fainting) for the first time in my life suddenly, with no apparent cause. Emergency room doctors didn't take the incident very seriously, put me on an IV of saline, and sent me on my way. The incident was followed by a barrage of strange symptoms, including weakness on the left side of the body accompanied by joint aches and stiffness (mainly the left knee), coordination issues, cognitive/memory deficiency, pain, extreme fatigue and headaches, muscle spasms, severe constipation, and general unexplained agitation. After several months, again, the symptoms subsided.

My most recent episode (which began about three weeks ago--with a gradual worsening over that period--and is currently still in effect) has been the worst yet. I am experiencing numbness and tingling/burning as well as random itching sensations in my left hand, leg, and foot. The tingling sensations seem to occur in consistent locations (left fingers and the bottom of the left foot are the main sites and the pins are sometimes stabbing and mildly painful and other times resemble itching). I often feel as though I am wearing a sweat band around my left wrist though I am not. My left knee aches badly, and the grip strength in my left arm is close to nothing. I am even having trouble typing with the left hand as we speak. I have been dropping things VERY frequently, about a dozen times per day. Fine movements are also more difficult, and there is a tremor in my left hand. I have trouble opening even a simple water bottle on my own. I have experienced abnormality in gait which has resulted in an odd twisting of my pelvis that is very painful and makes it even more difficult to walk. I also strangely have random contractions present in both sides of the body, but (weirdly) especially in my right leg where my muscles twitch involuntarily. I am very lightheaded almost to the point of dizziness nearly constantly and am mildly nauseated frequently. I am experiencing almost non-existent sexual drive (even when I try) along with difficulty achieving orgasm and it is very weak when I do. I am also severely constipated but have to pee every 30 minutes, which is abnormal for me. I keep forgetting what I am doing or saying when I am in the middle of an activity and more easily forget things that I have just learned or heard/seen. I have EXTREME fatigue that really takes its toll on me toward the end of the day and until I go to bed I just want to cry and lay down because I am so tired. I am having extremely painful spasms, however, in the neck and upper back along the spine that are making it very difficult to sleep and sit or stand for extended periods of time. I have also noticed that I have had more trouble being in an environment that is any warmer than about 75 degrees due to an odd, suffocating pressure around my ribs (accompanied by whole-body tremors--almost like reverse chills), and even that is difficult for me. I have also experienced general irritation and agitation that comes on much more easily than usual.

Upon developing these symptoms, I grew anxious and, after being whitewashed by my GP yet again, began doing my own research. I came upon many articles about Multiple Sclerosis and was utterly shocked at the parallels between these symptoms and my own. Of course, I don't want to (inaccurately) self-diagnose and I am not causing myself anxiety over this prospect. However, I do think MS sounds a lot like what I am experiencing. Just typing this message was hard; I lost concentration several times and had to think very hard to remember was I was going to address and stay on track (still think I left out a couple things) and my left hand isn't cooperating fully and now I am utterly exhausted, simply from composing this post.

Am I going crazy? Or is there some substance behind my suspicion? What is your more well-informed opinion? I'm just not sure what to do. Almost every doctor I have seen has treated me as though I am simply making this up out of the thin air or exaggerating or panicking (even though they have done virtually no tests other than blood panels and CTs), but these symptoms are beginning to affect my life, so I want a legitimate answer, even if that answer is that they are right and this stuff is just in my head. This entire experience, however, feels very real and I think I have at least a moderately accurate sense of my body and changes within it, so I think I have some sense that something isn't right and it's frustrating when no one takes me seriously; everyone thinks I have no idea what I am talking about just because I'm a young female.

Any input is welcome, thank you in advance, and I appreciate your time!

P.S. I am a caucasian, 21 year old female.
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Avatar universal
Hi Supermum,

Thank you very much for your reply!

I apologize about the huge walls of text, I was just typing and rambling on and wasn't paying much attention. I am not sure how to edit the question, I looked on the profile page and could not find that option.

I am sorry I didn't clarify, GP recommended I take Milk of Magnesia and Metamucil for constipation (no prescription) and I did receive antibiotics at that time and several times later on for UTIs, I just find it odd that they seem to occur simultaneously when the do occur. I was never treated for "psycho-somatic" symptoms at that time (namely the muscle weakness). I was given percocet for the headaches and flexiril for the muscle spasms as these symptoms were determined NOT to be psychosomatic. The weakness and fatigue were the only symptoms that were not treated or addressed at that time.

The weakness and tingling are not bilateral and seem to be on the left side only, as well as the contractions in the neck and upper back.

What you are saying is very possible, I was diagnosed with inoperable scoliosis at around the same age. I am still confused about the random syncope. It is just concerning because, as I said, I have been dropping things often and I am experiencing rather strange confusion and fog (not currently as a result of depression, as I only had that diagnosis for about a year in my adolescence).

I appreciate your help, and I do know that you're probably right. I will try to get referred to another specialist about my spine, I just wanted to check in here.

Thank you again for your helpful opinion!
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987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

Could you please brake up your future posts into much smaller text blocks, people with MS commonly have visual and or cognitive issues that makes reading and retaining big text blocks a lot more difficult...ta

The majority of symptoms associated with MS are generally associated with many other more common medical conditions because MS affects the central nervous system and unfortunately google searches will often list MS even when there's hundreds of other more common causes.

Some mental health conditions eg health anxiety, conversion disorder etc can actually produce physical symptoms and or mimic neurological conditions like MS and if there hasn't been anything 'abnormal' ever found then yes M/H 'could be' one explanation, not saying it is just that M/H is possible.

If your only 21 now, around 6 years ago would mean the start of this happened when you were a child of 14-15, 'IF' it was MS, that age group would mean it's one of the rarer types of MS because it would be pediatric MS.

You mention the symptoms you experienced when this all began and what your thinking could of been the first MS attack, which were "extreme headaches, extreme fatigue, painful muscle spasms in the left side, bowel and bladder problems (constipation, UTIs), cognitive and emotional disturbances, and muscle weakness resulting in an inability to walk without assistance." .....you were diagnosed by your GP with constipation and a UTI back then, everything else your saying was dismissed as being psychosomatic due to depression.

The prescribed treatment was celexa an anti-depressant for your depression, but your GP didn't actually prescribe anything at all for the diagnosed UTI or constipation (?) and you were additionally prescribed percocet a pain killer, and Flexeril a muscle relaxer though.....it doesn't sound right to be given treatment for the symptoms that your GP determined to be psychosomatic and not given treatment for the UTI and constipation the GP diagnosed you with. It was when you were a child and you were sick with an infection and depression etc so it's 'possible' what you remembered from that time, isn't quite right now your looking back...

To be honest though, a neurological condition like MS wouldn't be a likely explanation because it would mean pediatric MS due to your age when this started and those particular symptoms, either individually or combined are not generally suggestive of neurological abnormality or consistent with a typical first presentation of MS.

Keep in mind that MS literally means many scars, and whilst you may not have seen a neurologist or had an MRI, the different specialists that you've seen over these years would of found some objective clinical evidence to mean that particular symptom is suggestive/consistent with a neurological causation eg gynecologist would of noted the neurologically suggestive symptom pattern and found consistent abnormal clinical signs, diagnosing you with neurogenic bladder......suggesting your bladder issues are a medication side effect due to your birth control, implies there wasn't evidence of abnormality and or that specific contraceptive is a known cause of your type of bladder issues.

What your more recently experiencing sounds more suggestive of a possible structural spinal issue effecting your peripheral nerve system and causing all the issues associated with sleep deprivation...."extremely painful spasms, however, in the neck and upper back along the spine that are making it very difficult to sleep and sit or stand for extended periods of time."  and it's bilateral ("both sides of the body") which is more common with spinal issues than it is with MS spinal cord lesions and additionally the twisted pelvis, knee joint aching, banding around your left wrist, loss of hand grip etc can also indicate a potential peripheral neuropathic issue is going on.

Mental health issue or not I don't think your crazy, something organic does sound possible but i don't think what you've experienced does actually sound like MS, a more likely explanation to me would be a peripheral nervous system issue so if you haven't seen an orthopedic specialist about your back that would be what i'd recommend to consider doing.

Hope that helps.......JJ
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