I joined the military in 99. In 2000 I had a weird episode of fatigue, shakiness and slight blurriness in my right eye. Then the next year I had headaches, fatigue and eye fatigue for two weeks. I had a lot of health issues after joining. I also developed some tightness in my external hip rotators. In 2004, I was found to have hyperreflexia in all my lower extremities and my extensors and abductors were hyper contracted and could not relax. My pelvic region was so week my walls collapsed during child birth. In 2006 I started physical therapy for my hips and back pain as my knees were weak and gave out on me. I had an episode of blurry painful burning in my eyes. I fell at a food place and hurt my bum, so back to physical therapy. I thought I had fibro as I had tingling sensations on and off for the last 5 or 6 years, painful spots on my body, fatigue, and my right side was weaker than the left in my hip. Later in that year I had blurry vision in my right eye intermittently and a headache on my left face with neck pain. In 2007 my foot started hurting for 3 months for no reason. I had surgery in April of that year for hiatal hernia and gallbladder removal. That provoked another weird episode of dizziness, shakiness, nausea, and fatigue with intermittent blurry vision in the right eye and a headache. This time I would feel faint and see shooting stars in my vision. I had frequent urination during this time as well. Eventually things subsided and I was back to normal. Then in 2009 I started PT for my back as my lower back was unstable and I had weakness. In 2010 I had rt eye blurriness and pain with fatigue, bodyaches, and headaches. 2011 my bladder flared back up and never left with frequent urination and incomplete emptying. I had another episode of shakiness, blurry vision of the right eye, lightheadedness. I thought my blood sugar was low but all tests came back normal. This lasted 2 months then subsided. During all this time I would have periotic flare ups of neck/shoulder pain on one side or chest pain ever year or two. Heart checked out fine, minor MVP. In 2015 I had an episode of blurry vision (I believe in both eyes), dizziness 90% of the time with 2 episodes of vertigo which I’d never had before. My balance was off, I had chills, tingling and numbness. All my tests came back normal, ana, esr, ect. This time the fatigue did not leave. I’ve battled it for over a year and am just now doing better though easily fatigued now. I was diagnosed with fibro and CFS. I also at one point had my lower right leg from my knee to ankle go completely numb. It took a year to go away but still deminished sensation there. This year my shakiness came back along with a vibration sensation that lasted 6 weeks to 2 months and just went away 5 days ago. I also had visual tremors in my right hand and sometimes my left. They found two lesions on my brain in the right spot for MS (frontal, occipital), but none in my spine. The doc said they were tiny lesions and decided she did not have enough evidence to diagnose me before even hearing about my medical history. She then jumped on me for anxiety and told me I need to see a psychiatrist and that my lesions could be from anxiety or smoking. Of course in her report she wrote it could be from MS, Smoking, or Migraines. No research shows smoking causes lesions, but does show an increased lesion load in those with MS who smoke. So now, I am in limbo land. I do not want a LP as I’m terrified of needles in my spine. I’m curious if anyone else has experienced a course like mine.
Hello,
So sorry to read your story - sounds like you are having a tough time (and so its not surprising if you are anxious!). The fear of, and process for getting to, diagnosis is a horrible, lonely time - so I wanted to give you a response (although my story was a bit different to yours. Vertigo in July 15 (diagnosed at the time as BPPV (which it may well have been as fixed by Epley)) and numb toes in February 16 - led to a “busy” scan result that showed lesions in my brain, brain stem and spine so despite limited clinical symptoms I was able to secure a prompt diagnosis in June).
My understanding is that there are a lot of things that can mimic MS - which is why the diagnosis can take a while as they need to eliminate all the other possibilities through blood tests etc. The “multiple” aspect of MS means that for a diagnosis to be given you need to meet the tests of “dissemination in space” and “dissemination in time”. I think the first means that they need to see lesions / evidence of activity on more than one part of your central nervous system. I don’t think this means you need to see them on the spine - as having lesions in two separate areas of the brain or on the brain stem or optic nerve can also count (the “sticky” at the top of the board has a very helpful explanation if you haven’t found it yet). The dissemination in time part means you need evidence of attacks/damage on at least two different occasions (FYI - my neuro used a combination of my BPPV and the fact that an MRI in June showed a new brain lesion that wasn’t on my initial March MRI to meet this test).
With regard to the LP, I managed to get to my diagnosis without needing one - as my neuro was happy to diagnose from clinical/MRI evidence alone (as I clearly have a brain and spine like swiss cheese). My understanding is that a positive LP result is neither necessary nor sufficient for a diagnosis under the MacDonald criteria used - but that it can provide supporting evidence if things are otherwise unclear - so it may be worth asking your team why they think one would be helpful in your case?
One final note. Hopefully you’ve not got MS, and get a kinder explanation for your symptoms that will allow you fix them quickly and forget all about this board! However, if you do please don’t fear the worst. As I was going through diagnosis I assumed the worst possible physical/emotional/mental/financial outcomes were not far round the corner - to the point where I tried to push my boyfriend to leave me as I didn’t want to ruin both our lives (he didn’t). I now realise that fear, whilst reasonable, was based on a misunderstanding of the disease for the most part - which with the new consensus on early treatment, new treatments available for relapsing MS and better treatments in the pipeline for all types of MS (including progressive disease) is not the beast it was - and there are some amazing, strong people managing the disease and still having cracking good lives.
xxx
Thank you Katy79. I guess I should have posted that I’ve been tested for thyroid disfunction probably 7 times in my life testing each hormone as well. I’ve had my electrolites, VB12, D, magnesium, ect. several different Inflammation tests, aldosterone, renin, cortisol, and ANA. I’ve seen a cardiologist (minor MVP with palpitations), an ENT, an Allergist (no environmental allergies or foods). That’s how I got the diagnoses of fibro and CFS. I thought I was anemic over and over for a year and kept having her check my blood for my ferritin. Once my potassium was low and once my sodium was low both slightly but corrected by next blood draw and neither have been low since. My bun and creatinine is almost always low. MRI of my abdominal region was unremarkable. I do not fear MS. I fear not knowing what is going on with me more. In my mind fibro is a diagnosis of exclusion because they really just don’t know what is wrong. In 2011 during that episode I finally noticed a pattern of this dizzy, shakiness, blurry vision episodes but didn’t look much into it. In 2016 after filing a VA claim for my fibro, CFS, I got all my medical records in one place, went through it and really saw the pattern. I seem to have episodes of this two years in a row every 3 to 5 years since 2000. With muscle issues and crazy chest pains flaring more often. The only reason I had the MRI was due to me asking my doc if having a numb leg was due to the fibro and she said that was more neurological so we got the MRI which showed the lesions. I have a lesion in my frontal deep matter and occipital deep perpendicular matter. Last year after my flare in Feb, I developed some cognitive disfunction which had not happened before (except for my first episode which may have been due to zyrtek). My words come out in the wrong order and I keep forgetting stuff, have a hard time concentrating ect. I write notes for everything now. My emotions are flatter than before. I thought I just had some weird depression that hit last year. Not really depressed just flat and no desire to interact like I use to. I’ve been on Elavil for about 2 months now and my vibration sensations are finally going away. Plus I’ve been in PT which I think is helping as my muscles were so jelly like and shaky.
I really appreciate your response. I just hate having things blamed on anxiety as has happened most my life. I’m not overly anxious at home, just at the docs! Thank you for sharing your story with me. Take care!
Hi,
I only have one contribution. My neurologist was adamant I didn’t have MS. He said he thought it was a “functional disease” and (like you) promptly sent me off to a psychiatrist. After nearly an hour he asked me questions like, did I hear voices in my head.
This went on for few minutes until he asked “Do you hear voices on the radio talking about you?” I snapped “Not often enough”. He said “Your not depressed” and closed the interview.
Anthony
Ok, that made me laugh!!! Maybe I should accept the referral to a shrink! I just didn’t see the point in going, I don’t have any repressed issues, a bad home life, I’m just a spaz!!
I have a questionable diagnosis of fibro. And like you I do not fear an ms diagnosis I fear the unknown. After years of strange symptoms I’m waiting for neurology. Because I do have mental health issues although not as bad as they used to be I would be insulted if a neurologist blamed anxiety.
I’m just just getting very fed up waiting now. Genetics have also passed me into another neurologist who specialises in muscle disease as they wan to look into types of muscular dystrophy. I just wish things would go a bit faster. I’ve been waiting since the end of April.
All the best to you x
Moien Dawn,
Your post caught my attention because of several reasons. Mainly the ratio of episodes to what I assume is fairly normal health. I’ve had the same ratio. I’m currently awaiting a Neuro appointment.
I started having symptoms, a bit different to your own but some similar, a long time ago (about 1984-5). Since they only bothered me for a year or two and vanished for 3-5 years, and were mild, I never got treated or diagnosed with anything. They did however get worse each time. Then in 2011 they appeared with a welcome break in 2013 for under a year. 2014 started badly and I’ve been in a lot of trouble since then.
I wont run through all the tests I’ve had. You’ve already experienced that.
My biggest hurdle to diagnosis has been the Doctor/specialist’s insistence that it must be me. I have to be depressed, anxious or plain bad. Possibly I’m being too promiscuous and suffering from STD’s, I might not be exercising enough - though I may be exercising too much, I might be eating too unhealthy, could be burning the candle at both ends and need to rest more. There is a good chance I’m exaggerating because of my low moral fibre. There’s more but you get the idea.
There was a fantastically amusing comment from a military doctor in back 1990; I explained rather embarrassingly that my anus went into such a tight cramp I couldn’t go to the loo. At times it was so painfully I danced around the room on my tiptoes like a ballerina swearing loudly. I’d count down in my head. If it didn’t stop after 15 seconds my eyes started streaming. It was so hard to explain away in a corridor full of people. The doctor looked at me startled, paused, and then explained I quote " your exhibiting homosexual tenancies. If you come to me again with this I’ll have to contact your CO." Now I can laugh. At the time I was very very confused. In an abstract train of thought I can almost see the connection he made.
At the point I was requested to see a shrink I refused because frankly I find it insulting. I often wonder if I should to get it discounted. I wont though because I know it will infuriate me. From reading peoples accounts here I’ve found it to be a very common occurrence.
I eventually got diagnosed with CFS but don’t really believe it. I mentioned to the doctor that in January I slept 12 hours a day. His eye’s lit up. “CFS!” he shouted with great satisfaction. He was just glad to pin the tail on the donkey and get me out of the door. It was irrelevant to him when I explained that I usually sleep well.
All I can suggest to you is to keep trying and do your best to stay strong. Doctors can be absolutely useless at the best of times. Just don’t let them ignore you. I’m very interested in your outcome because of the similarities.
All the best
Mark
Mark, Hey my fellow Vet! I’m assuming your out now, are you rated by the VA? I found a facebook page for gulf war illnesses (American and UK) and apparently a lot of us are suffering from similar stuff. You might want to check it out. I blame the vaccines. When you mentioned the anal issue I immediate thought of proctalgia fugax. Look it up! I get them and one lasted for almost an hour, thought I was gonna fall apart it was so bad. My entire pelvic region/thighs/rear are super tight and throb. Been dealing with that for a long time. I agree with my CFS diagnoses as I am chronically fatigued. You can get rated by the VA for that if you served any time in the Gulf (In America it’s both CFS and Fibro but I think they only accept Fibro in the UK). It’s a presumptive condition. I have that as well though personally I believe my fibro is MS undiagnosed. Have you had the MRI of your brain? I too get very insulted when they immediate think I’m bonkers and want me to see a shrink. It happens a lot as I get super anxious at doctors. Just because they can’t figure it out does not mean I’m crazy or exaggerating, or whatever. Currently I’m awaiting on referral for an EVP test on my right eye. If that is abnormal, she may consider a diagnosis of MS, if not, she wants me to the lumbar test. I’m not keen on it and think regardless of it my EVP is normal or not, she’ll probably insist on it anyways. Other than that, I have to wait a year for another MRI on my brain to see if more lesions have formed. I’ve done extensive searches on the Internet (yup, full on internet doc) and MS fits all my symptoms to a T. No other disorder fits so perfectly, other than CFS, but the fatigue seems to go hand in hand with these episodes as well. Good luck to you! Thanks for replying and hopefully we will both get answers soon.
The unknown is a frustrating thing, especially when dealing with something for so long. I’ve had tons of things blamed on my anxiety but I’m such a logical person and I am anxious, but I’m not irrational. Waiting is certainly the worst! For us we want to know now, for doctors, it’s not their lives they are worrying about so no hurry. I guess in the grand scheme of things, if it’s not cancer or a fatal disease, then time won’t hurt much, just in our minds of limboland. Best to you as well! Hope you get your answers soon too!
Hi Dawn, I’ve been a long time replying but I got a bit down with my symptoms. I asked a colleague about your VA. What a great organisation. Britain has nothing like that. Once your discharged you’re pretty much on your own. We have the British legion but that’s rather like a club not an association. I can’t blame the military vaccines or tours for anything since I’ve been having these symptoms since I was 12. They just got worse with time.
I checked out proctalgia fugax. I don’t think that’s my problem as my cramps last from a flash to 20 seconds. I can’t imagine how it must feel to have that pain for any longer in that region. I’d rather have my arse stitched up and be done with it if I did.
Rather like yourself I played online doctor and the only thing that matches my condition is MS. I get my first Neuro appointment in one month and I’m going to push for an MRI considering everything that has gone on. In September I had a new symptom to add to the list - waking up unable to balance in the morning for an hour or so. It’s like being very drunk. Fortunately it only lasted for a week but was worrying. The last month has been bliss. I found an advert from a lady training to ba a masseur. She needs 150 hours of experience so now I get a massage for free and I can politely request one whenever she’s free. If I get spasms or cramp I get on the phone and that day I get it massaged away. It’s a life saver - really helps keep my moral up. I don’t know if you’ve tried it but I found it almost as helpful as Physiotherapy for the muscle pain.
Have you had your EVP test and if so did it get you any better diagnosis? I read a little about it as I didn’t know that could be used as a basis for diagnosis of MS. I was also surprised that you’ll have to wait for a year for another scan to check for more lesions. Can they not do another after a few months?
I hope you’ve had better luck lately and maybe hear back.