Hi I'm new to this and am trying to find out what types of symptoms those of you have. I have been dealing with symptoms for close to 8 years now and honestly had given up on going to doctors as they made me feel crazy and my family also doubted the validity of my symptoms. But because I have had some new symptoms (again) i feel that i really need to get to the bottom of this regardless of what anyone thinks.
My first set of symptoms started with tingling in my face, along with stabbing pains. I also had electrical shock sensations that shot down my spine, as well as other shooting pains in my back. I also started having muscle spasms in my neck, and my neck became spastic permanently and still is currently. After a few months, everything went away. A year later, I noticed fatigue. Then I had what i felt at the time were strange eye symptoms: blind spots in my left eye and flashes of light. I didn't notice anything else though until a year later. (The fatigue never went away though and still hasn't currently. Some days are better though, like if i am well rested. ) Then i noticed I was having frequent urination with stress incontinence. I also had weakness in my legs. I had chest pain that was very hard to explain, just felt constricted all the time, and like i was wearing a corset constantly. I also had alot of weakness in the trunk and I believe it contributed to pain (for compensating) I also had a shooting stabbing pain that ran from my chest and down my arm and was constant and didn't go away for hours. It drove me crazy! It felt more electric like then stabbing. Kind of hard to explain it really. I also noticed other abnormal sensations, like other random shooting pains, spasms and twitches, and tingling in the legs.
My symptoms did not subside for another two years. During those years I noticed more symptoms: more muscle spacicity (entire back and feet), joint pain in hips (not sure if this is a secondary symptom because of spacicity, because of overcompensating, and/or because of the way i walk from stiffness, and/or because of after pregnancy) burning pains, stabbing pains and shooting pains literally everywhere (usually not at once but just have occurred everywhere--sometimes they are sharp in nature, other times more electric) , vibrating sensations in the legs, non stop buzzing in the ears (so use to this now), a couple episodes of unexplained vertigo, heat intolerance, numb toes, freezing sensations, hot sensations, random butterfly like sensations, odd trembling like sensations throughout my whole body (not to be confused with tremors), tension headaches, stabbing pains in head, twitches, tingling elsewhere like in the back and chest.
And recently, both my arms starting from my neck all the way down to my fingers, were tingling, but also buzzed and i have weakness. The tingling has gone away, but the weakness remains. I also felt amazing two years ago when I was pregnant! I also have endometriosis which I'm sure is autoimmune. ( yet another awful thing to add to my crazy list of symptoms!)
I'm pretty positive this is autoimmune, whether or not its MS, but I have a strong feeling and always have that this is def. ms, mostly based off the pattern of symptoms and how they first started. I have also had blood tests for some things, not everything : lupus, rheumatoid arthritis, and lyme have been ruled out in the past, as well hypothyroidism. I also have had numerous CBC's, sometimes with a slightly elevated sed rate (which indicates inflammation of some sort...hmm...) I had mono when I was 18 and interestingly, symptoms started one year later. Ive had xrays and ct scans and they were all fine.
My only concern is that I did have an MRI of the brain with contrast 3 years ago and it was negative. I'm not sure if it had anything to do with the fact that my neurologist only did it because i demanded it and he had diagnosed me with being "hyper-vigilant" ( he pretty much claimed that there was no way I could be experiencing all these symptoms and that it must just be "all in my head" that i made myself believe these things and he went on about how med students do it because they read about symptoms....and you get the idea--I was furious!) and with complicated migraine. On the report it says "history of migraine" so not sure if that could effect how the radiologist interpreted the report. I think so. This neurologist was a dinosaur and the one I seen before him was as well.
I have never had a spinal MRI yet and I feel that this is most def. the next step. I also have had a PCP in the past who also said "none of your symptoms make any sense" and told me its most likely that i have depression and anxiety and she was very dismissive and seemed aggravated with me, esp. when i told her what about MS. (needless to say, i def. switched PCP's and now have a very understanding PCP, but she also still just thinks i worry too much--I have yet to find a doctor who will take me seriously)
Also what led me initially to see another neurologist was an "attack" I had 3 years ago in the summer. I was playing alot of tennis ( i was hoping to get rid of whatever was going on by trying to eat better and exercise and I do feel it helped, along with stress management--I was happy!) anyway, it was really really hot out and i played most of the day. When i went home, i had a massive headache that got worse and then I felt very disoriented and I was slurring my words. Went to the ER and got a CT scan no contrast. Everything was fine. They gave me toradol ( anti-inflammatory much stronger than ibuprofen--just wasn't sure how to spell it so in case anyone was confused) and I felt much better, and went home. One week later, again after playing tennis, I had an intense burning pain in my neck that would not go away. I also was experiencing stabbing pains in my head, freezing sensations in my head, tingling, and pressure. I was also getting intense shooting pains that ran down my chest into my stomach that felt tearing in nature. Later that evening, due to a panic attack, my the pain and headache worsened and my right arm went partially paralyzed ( it was strange-- i could use my arm, then i couldn't, then i could use it, then i couldn't) i was also so weak that i could barely walk and needed help. I also had uncontrollable jerking movements of my right leg and left arm. I was also very disoriented. I went to the ER since the symptoms were very similar to a stroke. Had another CT scan this time with contrast. Everything was fine. I was given neurontin and the burning pain slowly subsided. Then for reasons I will never know, I was given benadryl. I had an intense reaction of neurological pain: all i can describe it as is pure torture. I will never forget it and its why to this day i have a phobia of medications (im being very serious!-- i am now super sensitive to medications which i was never previously) The pain was literally everywhere, like every single nerve. It was a pure nightmare. Luckily it lasted for less than a minute and afterwords I couldn't keep still. I had to move around and move every part of my body.
The ER doctor was concerned and said that i needed to see a neurologist and that he wanted to do an MRI but wasn't able to. So i was released and sent home with a script of neurontin (which i didn't fill because i was terrified) The next day, I was fine. Like nothing happened. I had a headache that lasted for about two months, some jerking movements of the same right leg and left arm (occasional), and some stabbing pains, but for the most part, everything was mild.
I wish to find out any symptoms that I have in common and if these are some that any of you have. Numbness isn't a big one for me, but spacicty and weakness are. The type of fatigue I get is also I'm sure similar: I just feel so drained, my legs get weaker and heavier feeling and my whole body just feels heavy.
So please, if anyone has anything to offer, i would greatly appreciate it. I would love to be able to go see another neurologist (which this time im going to investigate) and bring in not only a list of symptoms that i have, but hopefully bring up others symptoms, so he/she sees that people aren't text book cases.