I have symptoms similiar to MS symptoms but my doctor is treating me for arthritis not ruling out MS? Does anyone have a similiar experience? I do have a mikd back disc bulge but my symptoms are more here they are:
Numb feet
Tingling arm with numbness
Blurry vision on and off, double vision
Pain behind one eye
Headaches one side ofhead
Feeling of being drunk when i dont drink
Dropping things
Foggy brain memory issues
Thigh numbness and spasms in same thigh and leg
Fingers swelling
Balance issues
Back pain and spasms
These are the most recent symptoms
Thanks ahead for replies.
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Michiganpbc
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I'm sorry about your myriad symptoms; most of us here have numerous and varied symptoms like yours, though that doesn't mean you have MS. Have you had thorough testing, which may include blood work, spinal fluid analysis, MRI of brain and/or spine?
We can't know your doctor's thinking, but I would suggest getting to an MS center if possible or finding a neurologist who specializes in MS. Getting the correct diagnosis is vital in getting the right treatment.
Thanks i have appt with my internist on thursday so i wanted to get ready for that mentally i am going to ask her to order mri seems from what i am reading that only 2 test can show ms mri and spinal
MS is hard to diagnose, have you asked to see a neurologist? Maybe request some MRI scans to see if you have any lesions?
It has taken my father in law 5 yrs to finally get his diagnosis just today in fact, but if I were you I would push for more tests and help if you can. There are groups on facebook you could join and get advice there too, good luck.
Hi Michiganpbc ...The thing about MS is that everyone experiences it a little differently. Doctors follow a very specific criteria to diagnose MS and generally have to rule out the many things that can also generate the same symptoms. Many of us have had to go through multiple doctors and a lot of time to finally get a diagnosis. As greaterexp said, you need to get the right diagnosis to get the right treatment. You do not want to be on one of the more powerful, risky MS meds if you don’t have MS.
Here are a couple of links to more information (knowledge is power):
Thanks, i have read most of the current literature on MS and have seen multiple doctors and tried physical therapist dry needling , many therapies for muscle spasms in thigh and leg can hardly walk now, i think at this point i just need to ask for the mri and maybe spinal tap next i have had blood work to rule out other autoimmune diseases so now onto neurologist i think, going to ask my internist on thursday to order a mri and refer me to a neurologist who works with spasticity. Thanks for replying.
Ask for a neurologist that specializes in MS. They will have more knowledge about MS than the rest. My first neuro wasn’t a specialist and gave me a completely wrong diagnosis. I followed my instincts and kept pursuing the diagnosis with other doctors. An MS specialist neuro will also have the most knowledge about MS related spasticity.
Hi Michiganpbc I hear you. I have suffered all those symptoms since 17. I am 72 now. I was diagnosed with PTSD, fibromyalgia, Chronic Fatigue Immune Disorder, Arthritis, Tendonitis, Polymyalgia, Chronic Pain syndrome, Hypothroidsim, Orthostatic hypotension, Syncope, TMJ, optic neuritis, dry macular degeration, burning tongue syndrome, chronic bronchitis, servere delayed sleep disorder, severe delayed sleep disorder, hypoplasia, --- probably more comorbiditis but can't remember--- until one doctor finally decided in 2016 to send me to get contrast MRIs of brain and neck. I was immediately diagnosed with MS and told I have had it since 17, and all my lifelong symptoms were due to MS(first experience with temporary blindness in left eye which stays blurry most of the time now). Also, my primary care doctor said he was sorry for not realizing or catching the MS sooner. so much for intelligent medical field!! I have been angry now for 2 years, but trying to "let it go" as the song says. I hope you find better answers.
Wow so sorry that happened to you. This new thigh spasm has been the latest newest issue that brought my attention to MS. I see my internist on thursday i am asking her for mri and a referral to neuro
Hi, my right thigh hurts a lot. I use a TENS unit on it and that helps. But if I forget and turn on right side during sleep, and it starts hurting so bad it wakes me up. A rheumotolgist diagnosed me with the fibromyalgia because I had pain in all 18 points. The TENS unit really helps when I put the pads on wherever I am having the spasms. a physical therapist ordered it for me and it has 2 settings - one for muscle atrophy and one for the electrical stimulation that does away with the spasms and trigger points. Sometimes my fatigue is so great I just can't make myself go get it up hook it up! Don't give up until you get the right diagnosis. And be sure to find a great physical therapist or chiropractor. He does dry needling in my pain areas that really helps, also. Even after I was diagnosed with MS, the 3 different MS meds he tried me on I was allergic to each of them. So, after all that, I still depend on treating the symptoms than trying to prevent them. And oxycodone doesn't phase my pain unless I go up to 25 mg which is too destrctive to my cognition. I pray for everyone on this chat room!
Yes i go to a pt twice a week i get dry needling too! She told me today that my leg spasm and pain isnt acting like a disc bulge then i asked her if she thinks it is more like MS she said maybe, she thinks i should get tested too as i have almost every symptom on the symptoms list. I have a store bought tens unit but it doesn't stick to my skin which one are you using? I will look into the brand you have.
Twin Stim. I order the pads online : Eco-Patch reusable self-adhesive electrodes for TENS unit. My old one was an Intelect TENS unit, but the new one is great. I can put up to 4 pads on me at a time. PT recommended when my leg cramps, to put two pads on each side of the leg. It does bring relief! ....for that day.
wow,I have had diagnosis after diagnosis too...once they slap on conversion disorder( that i definitely dont fit) it makes it hard to get any neurologist in hospital seeing you . latest diagnosis s is EDS, which was due to my joints being out of alignment after the forced walking in rehab . i have no joint issues before..and now 2 years out , i no longer seem to fit the criteria for EDS all thats left is neurological things and my leg issues can be also added to ms ,. truely every symptom i have ever had i can match to ms. trying to get anyone to listen in our broken system is another story.
I so sorry you R goin thru all that weirdo pain, sure sounds like M.S., but there are over 70 different auto-immune diseases out there, glad you'll soon see a neuro. MS specific, much wishes of great things come to ya & Blessings💐👍& welcome, now u r family too no matter what!💗---Jazzy🌹💜
I have a ms neurogist and a rheumatologist. Currently I am diagnosed with Rhuematoid and Trigimal Neuralgia. My MRIs have been inconclusive but I’ve had 2 “neurological flares”. In reality it’s only been a few years but it feels like a life time. I don’t understand why it’s so hard to diagnose auto immune diseases, but it is, and unfortunately some of us just have to have patience. I feel your pain. In the end I had to just keep showing up for my appointments and doing test after test after test. My rheumatologist just ran another huge panel of tests for more auto immune diseases last fall (all negative). My only hope is they figure it out at some point. Please keep posting! And I hope they get closer to figuring yours out!!
Have you had the spinal tap? From my research into diagnosis of MS there are only 2 test that can diagnose MS a brain MRI and a spinal tap for spinal fluid they look at the fluid for specific markers, everything else they are testing is to rule out other diseases. To me it seems if a patient has symptoms of MS they should be doing those 2 tests sooner than later.
Thank you both!! So my MRI said "can be MS if supporting clinical findings" or something like that, I'd have to find my old paperwork. I do have lesions but they aren't in the typical MS spots and my last MRI had no change. I have not had a spinal yet. I suppose I've just accepted they are waiting for a 3rd confirmed flare. My neurologist is 2 hours away from me and I did tell her I was going to come to her right away next time, I'm not doing the testing in my town like during flare number 2, then come up.
I have no idea how it "usual is" or "supposed to be" but for me, my flares are like a big bell. I don't wake up with everything. It's one thing (first flare was with my right eye, freaked me out!). Last flare I woke up with a completely numb upper thigh but I ignored it, I was on vacation. Then symptoms grew and grew over a few months period, then finally it came down the other side and I'm left with my fun bag of parting gift symptoms I get to keep.
So here I am. It was about 18 months from the start of flare number 1 to 2. Right now I'm at about 12 months from the start of the last flare. I just talked with my primary care this week, asking - like is this really a great plan, waiting? But he said once I'm diagnosed everything becomes tunnel vision and I'll be treated by everyone as if I had MS, including meds, but what if it's another neurological condition, better to be 100%. So I wait. So much waiting 😐
ps I should add, they do know something is wrong, my rheumatologist feels I have a second disease that is neurological based, my neurologist basically wrote to my rheumatologist saying "she can't at this time diagnose me" (when he asked for an update from her), and my primary knows there's another "undiagnosed" for me. So it's not that I'm ignored or dismissed. I think part of the problem is I had the bad plan to show up with 2 diseases instead of 1. So unraveling it has been harder than it maybe would have been.
Michiganpbc Get thee to a neurologist. Many of these symptoms are familiar but only MRIs and lumbar punctures distinguish MS from other conditions. I'm no doctor, but blurry vision (off and on) and eye pain were my first MS symptoms...though it would be another 16 years before I self referred to a neurologist and was diagnosed. General practicioners, opthamologists and chiropractors in my experience are not good sources of information for those of us with vague or unfamiliar symptoms. Many of us finally diagnosed with MS have learned that we have to advocate for ourselves. I wish you well in your search for answers.
Yes i have read the current literature on MS there are only 2 test to diagnose MRI and spinal tap. I see my internist on thursday for a follow up appt and will be asking her to refer me to MS specialist and order MRI while i am waiting for that appt. i have had blurry vision and eye pain for years. Glad you are diagnosed and can take care of yourself.
You might want to let the neurologist order the MRI, I know mine liked to order it be done a specific way to get better images of MS lesions. They will also do a thorough neuro exam which will be helpful in diagnosis.
Thanks i will ask my internist because the appt to get into a neurologist is going to be a long wait maybe 2-6 months so if she could order the MRI while waiting may be helpful...
Have they done an MRI or spinal tap yet? My Husband has more symptoms than I did and all of his MRI's on his brain have come back negative, but he still has issues!
No i haven’t seen a neurologist yet waiting to get in. I read that you can have the symptoms but test negative at first and is worth rechecking down the road if symptoms persist.
does he have MS too, or you mean he has symptoms more than you in general with his health? i was watching a seminar last night and they talked about how they can miss lesions depending on where the slices are done , and if contrast is used or not , and so on
Good you know right, i just got back from my internist she sent in a preauthorization in for MRI, she also informed me there is a 6-12 month wait to see a MS neurologist at U Of M so i may look in another city for a different clinic. What were are your symptoms? Mine are eye pain spasms in thigh blurry vision sensitive to any light, dropping things memory issues numb and tingling feet , arm face...
I want the best up to date doctors and treatment. I am only 54 and have a lot of life to live. I am hoping not to loose the ability to walk.My left foot drop is going on 5 months and if it is an upper motor neuron it could be permanent.Now with the left leg shaking and weakness,I am in a bit of a hurry for treatment.
Oh i am confused i thought you are being seen and treated by neuro practice? I am 58 was very active at the gym every other day now rarely go anywhere too painful
You must live in my Toledo Ohio area.I looked at U of M but may try Cleveland Clinic if I have to. Symptoms ,the major ones are, drop foot in left and numbness since October 2018.Weak right leg and numbness, can only stand 10 minutes with a cane.Numbness in left arm and hand off and on.Back pain much of the time.I have erratic heart rate and blood pressure.My body temperature never goes above 97.5.Nearly no gag reflex,migraines,no taste on back of tongue and a bunch of small stuff.
I live 10 minutes from the U Of M just outside of Ann Arbor to the west. My doctor started the preauth for MRI she put in a request for the MS clinic at U Of M but long wait so i am looking at other clinics and will call them tomorrow when they open back up to see if the wait is any shorter. My thigh is like a brick today went shopping and had to leave after 10 minutes of walking the pain/spasm was so painful
I have that problem too. The later in the day the more issues I have with it. Sometimes I also have issues getting words out of my mouth in the right order. Again the later in the day the more of an issue it is.
Mich, it sure sounds like MS to me but I'm no doctor. I don't know if you've done an MRI but it might be good idea. Three days ago I wrote an article on MRI's, MS and MRI's at scooterjon58.com I have lots of MS articles there you might want to look at.
Thanks i will read them, i can hardly walk today my thigh is a brick i have no meds that help trying to get baclofen seems this is worth a try to calm down the spasms in my leg?
Have you had an MRI? Visual disturbances are not related to arthritis in any way that I know of. Maybe a second opinion is in order. I have arthritis and MS, so the 2 diseases could be present in your body also. You should see a neurologist for these symptoms most definitely. It may not be MS, but only a neurologist could say for sure.
Thanks for the reply, i am having a MRI this morning at 10:30 my internist will then refer me to a neurologist she said i have called a MS clinjc near me and there is a year wait list, so i may go out of my area to get in sooner somewhere else. I will keep you posted what the MRI shows if anything. How were you diagnosed based on what testing ? I read the mri and spinal tap are the only 2 test that show MS...
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