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  • The Dreaded Normal MRI Results

    The very first MRI I had back in 2009, when my symptoms began, was examined by a neurologist, which he found a “small, nonspecific lesion” and mentioned I should keep a watch on it with future MRIs. My symptoms then started as left-sided, mild hemiparesis and left unilateral paresthesia. I noticed it in my left thigh, and it gradually radiated down to my left leg and up my back to the left arm. Of course, at the time like many others with unilateral hemiparesis/paresthesia, I thought I was having a stroke. The constant “buzz” and weakness persist for several days before dying out and transitioning to a chronic but transient reoccurance of the same symptoms, but albeit very faint in comparison to the episode that lasted several days. This transient buzzing has never stopped since.

    One later in 2010, I experience what I believe was the Lhermitte’s Sign. I was talking to a customer and leaned my head to the right, about 45 degrees, which then triggered a painful electrical shock jolting down my neck and right side. My grimacing and wincing response to the pain was outwardly noticeable, as the customer asked if I was all right. I told them I was fine, of course, even though my neck and side was burning with the aftershock of the jolt. This carries on for about a year every time I tilt my neck in that same position.

    Then, two months ago was the doozy. 6 years after my first episode, I experience what I believe is my second full-blown episode. At first, I believed it was a migraine aura with the whole nausea, faint spots in front of the eyes but not enough to cloud vision entirely, and a tension headache. This builds for an hour until I’m released from class and drive home. As soon as I get in the house the spots get bigger and explode into white. They are becoming so opaque, big, and numerous, that I cannot even see to read my textbook. This continues for an hour before my left side explodes and lights up. This is no longer the ignorable and tolerance faint, transient buzzing. The intensity of the paresthesia has increased to a painful level, and I now begin to notice a clear division between my flaming, electric left side and my normal, unaffected right side — from my scalp to my toes. Realizing that this was no migraine and that it was episode number 2, I begin to write every symptom thereafter.

    As this is already lengthy, I’ll sum that symptom list up. The next day, the total numbness and weakness kicked it. It affects my walking so much I end up with shin splints in my lower left leg within two days. The total numbness and weakness last for two days, and it transitions back into more of the paresthesia. Although every area of my left side was fair game, it kinda came and went like Christmas tree lights set on blink so that a group of lights light up, then fade, then another group lights up, then fades, and so on — several localized areas of my skin “light up” then fade as other areas begin to “light up” and fade just the same. I actually kinda thought this part was pretty interesting and cool, hah! Then after a day of Christmas tree paresthesia, it fades into similar normal transient buzz, but with greater intensity this time — more on pair with the intensity of the first episode.

    And that’s kind of my story. I had a second MRI a year after my first episode, which the radiologist and my primary said was normal. When I told him about the lesion that the neurologist found, he said he didn’t see it. I just had my third MRI done last week, of course because of this 2nd episode, and it was normal as well. I’m still waiting on an appointment with my new primary to cover the specifics, but I can’t help to feel extremely deflated and disappointed at this time, and I’m just so very confused as well. I’m currently in nursing school with a year and a half left, so this second episode is just very inopportune. I had to remediate and come back to perform hands-on skills that I just couldn’t do the first time because my left hand was locking up and the paresthesia flared up so bad that I couldn’t concentrate. I scrawled like a baby to the instructor that day. The whole ordeal was just overwhelmingly mortifying.

    I just dunno where to go from here, and I feel like a hypochondriac talking to most everyone else. The neurologist who found the first lesion is no longer in practice anymore, so it makes things harder surrounding the elusive “small, nonspecific lesion” that no one else seems to find. I think I’m just in need of moral support right now from those that understand, because I’m feeling so defeated and have no idea what direction to take from here. ;{

    … unhelpful reactions.

    I am a bit disillusioned at the moment. I am having yet again another bladder infection and I am really run down. My line manager at work has just given me loads of work, more than even a healthy person could manage. I did discuss the issue with him on several occasions, but he does not want to listen. He knows about my MS, but somehow do not understand, that 40 hours plus doctors appointments and so on is a lot to take on.

    I feel really exhausted and all my sister has to say is, that I should just pull myself together and get on with it – on one occasion describing me as being weak. My partner tells me that, I should think more positive. In fact, at the moment he is thinking of leaving me, because I am not enough “fun”. While ignoring the fact that maybe him getting hardly any work (he is a freelance designer) is the main cause for his unhappiness.

    I am trying my best to get on with life, even when walking is difficult, my bladder is all messed up and I am just tired most of the time. I know it could be worse … but still. I just wished that sometimes, people would be a bit more compassionate and think before they speak. I guess they are just as scared as I am … and do not know how to respond differently. But that makes dealing with MS a lonely business at times.

    Ampyra issue

    I was diagnosed with Progressive MS last July. Well, I was prescribed Ampyra (which, I was told) is not “technically” a MS medication even though it helps keep me walking. I called Acorda and was told they did away with the PAP because they are going generic at the end of the year. The medication is $2,500 a month and when I called the company, they told me that a generic price will all depend on my insurance company, the mail order pharmacy they use and the manufacturer the pharmacy uses. I do plan on asking my insurance agent because I have to re-negotiate insurance for next year. I was just wondering if anyone else has run into this issue with Ampyra. I apologize, this is my first post and I don’t even know if this is the right forum and if this is appropriate but I am just looking for advice/guidance.

    Analyzed at 70!!

    At long last have answers to why my legs are so worn out the previous 12 yrs. I have PPMS. My legs feel like 1000lb weights. My equalization is unpleasant. In the event that I exercise them, they feel like noodles. I don’t have torment. I am fortunate. It is solitary my legs. My vision, upper quality isn’t influenced. I currently require a push truck to walk alone. Everybody read adult manhwa needs me to attempt CBD oil and I have 3 distinct occasions. Nothing. I have attempted the medication Ampyra. Nothing. I don’t recognize what to do straight away. Going to take a stab at dispensing with sugar and carbs next. I feel like a miserable challenged person now.

    Crawling sensation on scalp

    Hi people, I joined this site last year because it was suspected that I have MS, but after an MRI (showing 2 small lesions) and a (useless) 10 minute consultation with a neurologist it was concluded that I suffer from silent migraines.

    By now though I have serious doubts about this diagnosis, since I also have symptoms which don’t match with migraine (sudden debilitating fatigue, muscle spasms and ‘the hug’) but with MS, alongside most of the other symptoms mentioned on this site.
    I also have this intense crawling sensation on my scalp, like an electrical current rippling over my head, mostly from the back towards the front. I would be happy to hear if anyone else in here recognizes this since I’m wondering if it is one of those odd symptoms which aren’t on the official list but are common among patients anyway.

    Apart from that I also experience a sort of ‘brain zaps’ especially when I’m lying down at night to go to sleep. It’s a really bizarre feeling, like my brain is jolting inside my skull. This waxes and wanes over the weeks and months, like the other symptoms. Does this sound familiar to anyone?

    Thanks for reading so far, I’m trying to get some more clarity since I am contemplating on getting a second opinion. Your input is greatly appreciated.

    Odd "smell"

    From time to time I have the sensation of a very disgusting, sickening smell. It’s mostly if I am under a lot of stress. The scent is so overwhelming that I can’t eat. Even water tastes like the scent. It is kind of like bad sweat (way past perspiration) and rancid oil. It can last a few hours to a few days and I have often lost a small amount of weight because I can’t make myself eat. Because my doctors can’t find any other reason for it, they have said it must be my MS. Has anyone else been bothered with this?

    Monocular diplopia

    Hi, question for you guys. Has anyone here had monocular diplopia as a symptom. This is when you still see double even if you close one eye, it’s like ghosting. I have bilateral moncular diplopia along with more symptoms than I can count but this is weirdest. My vision isn’t blurred just that both eyes see double independently. I also went to 2 different opthalmologists who said my eyes were healthy and there’s nothing wrong with them.

    Thanks and take care.

    Flexible Jobs for Chronic Conditions

    Here is an episode of the FUMS Podcast Show that deals specifically with finding flexible employment opportunities that work well with our ever-changing disease burdens! http://fumsnow.com/fums-023-flexible-jobs-for-chronic-conditions-with-brie-reynolds. At the end, they provide you with a code for 30% off a membership. Find it here: www.FUMSnow.com/FlexJobs. AND – if you’re interested, FUMS is creating a course to help people in the chronic conditions communities find these flexible jobs. Sign up on the email list now and you’ll be among the first to hear when the course is finished! Sign up now at www.FUMSnow.com/PatientsGettingPaid

    Social Security Disability Benefits & MS

    I wanted to share the latest FUMS Podcast Show episode – all about applying for SSDI when you have MS. It’s really interesting and helpful. I hope it help you. Here’s a link to the episode: http://fumsnow.com/fums-024-social-security-disability-benefits-ms.

    Barber

    I have had what I thought was a muscle pull in my upper thigh. Presently since it hasn’t recuperated and keeps showing up, I’m thinking about whether it’s spasticity? It happens generally when I stand up, yet additionally when I turn off-base. I get a sharp agony then sort of a draw. On the off chance that I stand straight and begin strolling, it leaves. Any considerations Subway Surfers For IOS increased in value. I’ve just had the brilliant “embrace” so I know nothing about spasticity in the limits. Know everybody is extraordinary.

    CIS

    Hi. I’ll endeavor to keep this short. Since my senior year of secondary school, I began getting torment in my correct eye. I thought it was headaches, however the agony just influences my eye. It is terrible and goes back and forth. It’s been a couple of months since I’ve had it last. I shed pounds quickly without attempting 18 months back. I am 21. A year prior I went to the grounds medical attendant to check whether I had sickliness on the grounds that I was so cool constantly and due to the weight reduction. I likewise felt lethargic toward the beginning of the day. Ferritin was 29. Thyroid was fine. a half year back, I went to dire consideration with shivering in my arms, legs, hands, and feet. Medical attendant checked my blood – no B12 or folate lack. “Typical… “. It was keeping me from dozing. It hasn’t ceased from that point forward, I’ve recently become accustomed to it. Tried my DNA – greatest hazard factor for me, at any rate with immune system ailment, is overwhelmingly MS. I thought I had celiac, ended up being only a gluten bigotry. Created numerous new hypersensitivities. Skin break out, BMI is 18.0. The shivering transformed into sharp, electric-like stun torment everywhere manga online on my body that endured about a week and a half. I additionally had a no-no tremor in my neck. Interminable weakness, dry skin, low body temperature, pre-diabetes. Specialist alluded me to a nervous system specialist supposing it was dysautonomia. I dropped the arrangement when things showed signs of improvement, however he encouraged me to reschedule on the grounds that these sort of things don’t leave. I utilized my pulse screen to self-determine to have POTS. I get swelling and irritation. I get hot and cool hands, however for the most part they are constantly chilly. Any contemplations? Much obliged!

    severe burning pain

    Has anyone else experienced a severe burning sensation? Mine happens in my legs. It feels like I’m burning from the inside out. It comes on suddenly lasts about 5 minutes, it is from my butt down to my toes. It feels like my leg is in a campfire. Unfortunately when this happens my other leg has severe pain and cramps up and freezes like a statue. I have been lucky enough that the 5 or 6 times it has happened I have something to lean on or someone to help me as I can[t use either leg. The burning is extremely painful and very draining.

    Wanting feedback from TENS users

    I am a university student looking at making a TENS machine. The machine I will be making is a belt wrapped around the waist and pads attached to the belt to be freely placed on the body. I have some questions that would help with the design process, any answers would be greatly appreciated and helpful.
    When using a TENS machine where did you place the display screen when sitting down and walking?
    Did you ever find the placement of the display screen a nuisance and if so why?
    How comfortable did you find the pads and wires connecting the pads when in use?
    Are there any comments you would like to make about a TENS machine worn like a belt?
    Are there any additional comments you would like to make?

    Overuse of Steroid Infusions/ER Visits?

    Hello,
    I am new to being a caregiver and new to MS. My boyfriend of almost 2 years was diagnosed with MS 4 years ago. I go to all of his appointments (neurologist, MRI’s, etc,) and have spent many nights sleeping in the hospital when he has had a flare up. Being that his next appointment is not until next month, I wondered if anyone could help out with a question. How often is too often to go to the ER for a steroid infusion? It seems that every time my BF has a flareup he immediately goes to the ER to request a steroid infusion. Everything I have read and heard from doctors is that you should wait 24 hours to see if symptoms go away on their own. He has been admitted to the ER for infusions at least 6 times this past year.
    About two weeks ago he was diagnosed with the flu, double ear infection and an upper respiratory infection. He started having MS exacerbations and wanted to immediately go to the ER for steroid infusions. I had read that when you have MS and get the flu, you will have MS-like symptoms because your immune system is shot and is working really hard to fight the virus. I called his neurologist and she said that it would be a bad idea to get a steroid infusion due to his lowered immune system and unfortunately had to let the meds run their course. The only reason she gave to go to the ER was if he was experiencing new symptoms or was in a very weakened state. He did not complete his round of antibiotics (grrr) and today started to have symptoms again. It was also quite warm today, so I asked him to go sit in air conditioning to see if he felt better and offered to call his neurologist. He did not want to me to call his neurologist, so he sat and relaxed a bit. His symptoms have subsided and he is now sleeping.
    I want to honor his pain and discomfort, but I also am unaware of how often is too often or what is a “safe” exposure to steroids. Of course I will ask at his appointment next month, but wondered if anyone had any insight they could provide.
    Thank you!

    Can anyone help me?

    I’ve never been diagnosed.
    I’ve been looking for answers for two months now.
    Some of my symptoms I’ve had for over five years I just learned to live with.
    I haven’t been able to work in over a week.
    Two months ago my pain became so severe I was left no choice but to get help
    I’ve seen orthodontist
    They said even though I have bulging discs and stuff it’s all normal for my age
    Should not be in this much much pain
    Back to symptoms
    I am so weak I can barely walk
    I mean lift my legs like weights are in them
    My arms and legs get so weak when I’m up for a few minutes it’s ridiculous
    My neck is stiff like knots in it
    I’ve had balance problems for years being pulled to sides, running into doorways stumbling
    Dizzy everytime I get up
    Dizzy spells are worse in spells
    Sometimes I feel like I have to pee but can’t tell if I’m going then get up and I’m still going
    Or I can’t go
    I’m supper emotional

    Pain Management Dr, Neuro too?

    Hello,

    My pain management doctor is retiring that part of his practice. His practice is in Seattle , WA and I live in Portland, OR. I am willing to travel some for a great doctor. Do any of you in or near the Pacific NW have a pain management doctor you would recommend? I still see a Neurologist in Seattle, but I am his last MS patient. The rest have the same illness that Michael J Fox has (sorry, cant seem to find the word for it, lol).

    Right now, I am starting with a general pain management clinic in Gresham, Or., The first thing he did was take my morphine and reduce it by 1/3 without really looking at anything. I do not have much confidence in him at this point. He is also telling me that he isn’t getting what he wants as far as paperwork from my doctors and wants me to press them. Is this normal? I thought once a patient signed the release, the doctors could communicate what they wanted and needed. My charts are huge so I don’t understand why he is saying he just wants the last few visits and is saying that he does not have enough. I called to make an appointment yesterday and left a message. It is almost 1pm today and I have yet to hear from them. As far as I can tell, it seems this is not going to be a clinic that I will enjoy working with, especially since he wants to see me every month. Any advice is appreciated! I have only ever worked with one pain doctor in the last 13 or more years.
    Thank you!
    Kristina

    failing at work from severe cog, and our office culture creates massive anxiety

    I have cogfog,which is made more severe in the climate of fear that permeates my (famous) workplace, the anxiety assassinates my information retention skills, which makes me unable to excel, or even do a decent job. It didn’t used to be like this. I don’t want to launch into an “I used to be” song, but yeah, I had elite verbal and retention skills. Now, I can’t do a job that is a veritable paint-by-numbers. It doesn’t help that the culture of fear at work makes a problem I already have, worse, which in turn strengthens my fear. Vicious circle.
    I am now applying for STD, for the second time in 3+ years. How do I go back, when the job itself is exacerbating me? I am currently not “out” at work, and I don’t think they will be willing to find an accommodation for me, in the form of another position. I think they will claim that my restrictions make me unable to fulfill the requirements of (any) role.

    I’d appreciate any thoughts, personal experiences, advice.

    Stress and MS, and MS stress

    Hi. I was diagnosed 15 years ago. I had some very bad exhaserbations at the beginning, but more recently I have been somewhat lucky. I say that like I have no problems. Truth is, I have new ones. I was hit with some very sad, stressful news. Our first grandchild, 3 months from her first birthday was diagnosed with Stage 4 Neuroblastoma. She is still fighting, and has a long way to go….but its the most recent thing to send me to the hospital. After the initial shock I tried doing all I could to support my daughter and granddaughter. You think to yourself I can be sick, in bed, hurting…whatever just let me be there for them right now. Well, that became a prayer daily. I was granted such request and like a bombshell I crashed. At first it was “why am I tensing my stomach?” and “why is my tongue doing this wierd stuff”. I dismissed it as being over tired. But it got worse. I made an appointment for my primary care doctor for the following Monday. Im not sure what happened over the next few days but I was home, alone and I guess other than talking to the dogs it was a pretty quiet much needed weekend. Monday morning I get to the doctors office and I sound like Im drunk. Actually, more like I had or was having a stroke. As soon as my doctor of 10 years walked in the room he asked two simple questions, grabed both my hand in his and said Im right here and Im not leaving your side, but the nurse is going to call 911. Of course it sent me into confusion, fear, anxiety. I was swimming in a hundred half thoughts, nothing was coming together, nothing made sense and it just made me more upset. I was of no use to the resque squad as I couldnt answer them or even understand what they were asking. The ER doc kept asking me when these symptoms started…I couldnt tell her. They kept talking about a four hour window and kept pressing me for answers which just made me more upset and confused. I went straight into bloodwork, ekg, and an MRI. Luckily, they did not give me the medication they were trying to figure out of my four hour window. Seems if you are having a stroke that is the time they have to get the meds into you to save you. I was admitted and several doctors worked on me. The MRI showed no stroke so they assumed it was a MS exacerbation. They asked if any stress was in my life….uh, yeah but it was too upseting to discuss at the time. When I could finally get it out they turned white almost. They didnt know what to say. They didnt know how to comfort me. All they could think to do was give me solumedrol via IV for three days. I slowly improved to be able to speak, and have a small conversation. I was in pain yet they couldnt find a physical reason. I was told near the end of my stay that IF I did not want to be back in here for real…with a real stroke I needed to remove some stress from my life.
    Do you ever get told that? It’s like we WANT the stress! That isnt how it works folks! And how exactly do you remove it? It is silly concept, and I think its the only thing doctors can say…they sure cant tell you how. They do go down an imaginary list of what to do and not to do. And in a perfect world we would have switches we could just turn off things, like pain…stress…emotions…eating to much or too little…sleeping too long or not long enough. But this isnt a perfect world and daily you are confronted with obstacles to go over, thru, or around. STRESS IS huge when it comes to MS. Its something we all have to deal with in our own way. But there is MS Stress as well.
    My MS stress is two fold. One, I have a doctor I have seen since I was diagnosed. He is very clear on his views-that MS ONLY AFFECTS YOU CENTRAL NERVOUS SYSTEM. No other symptoms I have are connected, though there are written about and discussed all the time. He talks fast, mumbles a lot, is very matter of fact, and on a time schedule. His next appointment is January 2019. I find a great deal of stress in that. Supposed to be one of the best in my area, yet he doesnt look past his own reasoning to consider other issues you are having that have been proven people with MS have. Its enough to make you crazy! But what do you do? Find another neurologist? Much easier said than done. The best of the best are in one group and you cannot see other doctors, you have to stay with the one you have unless you want to go head to head with the office manager as to why you need to see someone new and they approve it or say no. What kind of world is this? I cannot tell you all the things my body is doing right now-and he is of no help. Hurt? too bad. Cant give pain meds out. Emotional? Find an outlet…what?! Too stiff? Do yoga, and exercise. Where did the doctors go that cared about their patients? That took the time to listen and strategize a plan to help you live a better life? I CANNOT FIND ONE…is that the norm these days? Talk about stress! Anyone in this boat with me? Have any suggestions?

    Aging with MS

    I am 67 years old and I have relapsing/remitting MS. I’ve had MS for 25 years. I feel very fortunate not to have progressive MS at this point.

    As I get older I find it more and more confusing to separate MS symptoms from “normal” aging symptoms. The neurologists I’ve asked told me that for the most part it is hard to tell. One article I read said that of course we get all the aging stuff, but we tend to be ahead of the curve by about 10 years.

    The thing that worries me most is increasing cognitive loss. About ten years ago I did go through the testing for dementia, and at that time was told that t I did not have alzheimer’s or other common dementias. So the mental fog continues, and continues to get worse.

    I suppose in the long run it really doesn’t matter. As always with this disease I waiting for the next adventure. Is anyone else experiencing this?

Viewing 20 topics - 1 through 20 (of 402 total)