Announcement

Collapse

WELCOME TO OUR NEW HOME!

Hello MSWorld Members,

Welcome to our new home! We hope you love it as much as we do!


we promise.

to offer current and relevant information.

to grow a community built on positive and affirming support.

to showcase member creativity.

to provide safe chat rooms.

to provide well moderated forums.


we believe that what we give as a community comes back to us.

welcome to MSWorld on this journey through a different lens. together. we are msworld.
we are. community.


We appreciate your understanding as we finalize our new home. Our arcade is still currently under construction and won’t be available for a while. Thank you for your patience while we prepare a new and improved arcade for you.

enjoy our new home.

support reimagined.
See more
See less

Is there such a thing as PRE MS?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Is there such a thing as PRE MS?

    For the past two years I've had MS like sx (persistent tingling of all hands and feet, frequent urination, dysphagia, weakness in hands/feet, muscle twitches) - that came on suddenly --- all blood work has returned normal, 2 EMG's are normal, and had MRI's done of head and spine for the past two years w/ w/out contrast showing no lesions -- thus neurologist said I did not have MS (for now).

    However I switched to a new internal medicine doctor today who went over my symptoms and told me she thinks I do have MS based on what she's seen and the sx I've described. When I asked about the McDonalds criteria and the negative EMG/MRI - she mentioned it could be early on in its stage and said its "kind of like someone with high cholesterol, obese, chest pains, high triglycerides, etc..and says the test shows no clogged arteries... but do they really have heart disease? In my opinion yes.-- And in my opinion you do have MS.. but its just not showing right now."

    I know about the McDonalds Criteria and the necessity of MRI's but since no other treatments/ explanations have been offered.. and my symptoms seem to be be getting worse.. I was hoping to get some guidance on what to do:

    1) Do I keep insisting on getting annual MRI's - the doctors seem to suggest this is not a good idea and mentioned that MRI's are not totally benign?

    2) What other tests should I insist on to check.. lumbar puncture, nerve conduction studies..etc? I know others on here have been in limbo for years-- were there tests that doctors usually overlooked that eventually yielded results.

    3) Is there anything to be done to slow down the progression (disease modifying drugs) if this is just a "pre" full blown MS condition.

    4) Does the sudden onset of symptoms followed by slow progression seem to fit the PPMS pattern (it seems like it does to me)? Does bilateral presentation favor a PPMS or RR form better?

    5) Is there a way for a definitive diagnosis without MRI? (Lumbar puncture, etc)..

    I'm super scared/depressed right now...I have a young child to care for and I don't know what I'm going to do if I am disabled in the future (i know that is jumping the gun a bit--but I can't help but think that far ahead.) I've been in limbo/ on and off these boards/ for the past 2 years .. and still have no answers, but I feel I'm getting worse.

    #2
    I am sorry that you are in this a bad place ... LIMBO!

    There is a precursor to MS named Clinically Isolated Syndrome. Here is information about it: https://www.nationalmssociety.org/Wh...Syndrome-(CIS)

    Approximately 5% of patients are diagnosed with MS WITHOUT lesions depicted on MRI. MRI lesions are not a requirement, but most physicians are extremely hesitant to diagnose MS without them. Being misdiagnosed can be even more damaging that being diagnosed.

    You really need to find a neurologist, preferably a MS Specialist, that can answer these questions for you.


    I wish you well ...

    Comment


      #3
      Is there anything to be done to slow down the progression (disease modifying drugs) if this is just a "pre" full blown MS condition.
      Without a diagnosis of Multiple Sclerosis the Disease Modifying Therapies (DMTs) are not prescribed. They come with their own risks and side effects. These drugs may or may not slow progression, no guarantee.

      Is there a way for a definitive diagnosis without MRI? (Lumbar puncture, etc)
      There is no single test, by it's self, that can give a definitive diagnosis of Multiple Sclerosis and the reason there is a diagnostic criteria for this disease.

      Does bilateral presentation favor a PPMS or RR form better?
      Neither. Bilateral presentation isn't that common. That type of presentation is usually due to spinal cord involvement which can happen to anyone with MS. Body wide symptoms, as you describe, isn't indicative of MS.

      I switched to a new internal medicine doctor today who went over my symptoms and told me she thinks I do have MS based on what she's seen and the sx I've described. When I asked about the McDonalds criteria and the negative EMG/MRI - she mentioned it could be early on in its stage and said In my opinion yes.-- And in my opinion you do have MS.. but its just not showing right now."
      Many Drs. outside the specialty of Neurology think they know what MS is and what the symptoms are. However, the majority of non-Neurology Drs. actually know very little about the diagnostic criteria or the way MS presents. This is based on a discussion with my Neurologist plus my own experience other Drs. who do not specialize in Neurology and specifically Multiple Sclerosis.

      There is no symptom exclusive to this disease.
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Thank you for the responses. I am scheduled to have another emg soon and am trying to get into see an ms specialist for advisement - perhaps get a lumbar puncture - and perhaps another MRI- my last one was done in September- so maybe a 9 month interval— is that too soon?

        The reason I’m concerned is that I woke up two days in a toy with my left hand completely numb as if someone fell asleep on it. The sensations returned within seconds— but still feels strange. This has happen in the past but I dismissed it as a compression issue since the sensations returned after a few seconds and “shaking it out” it was my hand was under a pillow or something. But the last two days it’s clearly not a compression issue as I was sleeping completely straight.

        i was hoping someone can tell me - if I should wake up with a completely numb limb- what should I do? Go straight to the emergency room? Try and get an mri while something may be flailing—-Wait for it to return function?

        I dont understand why why this is happening if my last mri showed no lesions. If 5% are diagnosed without lesions on the mri - what is happening mechanicaly if it’s not lesions causing the disrupted signal?

        Anyhow- thank you for your input and advice. I am super scared right now- and my family is tired of hearing me talk about my sx and trying to figure out what’s wrong. They think I am looking for an MS diagnosis— but I am not. I just want to know what is happening to me— waking up with a numb hand is not normal.

        Comment


          #5
          I woke up two days in a toy with my left hand completely numb as if someone fell asleep on it. The sensations returned within seconds— but still feels strange. This has happen in the past but I dismissed it as a compression issue since the sensations returned after a few seconds and “shaking it out” it was my hand was under a pillow or something. But the last two days it’s clearly not a compression issue as I was sleeping completely straight.
          Sleeping the wrong way can cause numbness. Even if you are lying straight your limb could have been held in a certain position for a long period of time which will cause it to go numb.

          Numbness in MS cannot be shaken/moved and the numbness goes away. Numbness in MS doesn't typically last seconds. In MS numbness is not considered an emergency as it is termed a sensory symptom and not much can be done. MS numbness can last consistently for an extended period of time and/or be a permanent symptom.

          As far as the percentage of 5% being diagnosed with MS without MRI evidence; this is really quite rare nowadays and 5% is quite a small percentage of those diagnosed with MS. Those diagnosed within that 5% needed to have positive clinical evidence (testing) of this disease.

          With normal MRIs and if your Neurological exams/evaluations are normal MS would be highly. unlikely. A Lumbar Puncture is an invasive test. If your Neurological exam is normal and normal MRIs a Neurologist might decline the need for a Lumbar Puncture. The Lumbar Puncture is used as a diagnostic test for many conditions and is not specific to MS.

          Information about the Lumbar Puncture:
          https://www.mayomedicallaboratories....erpretive/8017

          Joe, I am one of those in the 5% that received a diagnosis of MS without MRI evidence. In my case; It was obvious to everyone (friends, family, Physicians) that something was very wrong.

          I went to my PCP who, after examining me said he could not help me and handed me a referral to a Neurologist. My Neurologist ordered many different tests and the diagnostic process took 3 months then I received my diagnosis. I received a clinical diagnosis based on Neurological exam/evaluation, symptoms, and a positive Lumbar Puncture. At the time I was diagnosed the diagnostic criteria was different than the current McDonald Criteria.

          The Lumbar Puncture was done as a last test and because I was still in the same condition. My Neurologist said we had a better chance of having the Lumbar Puncture showing something because I was still in the same condition. The Lumbar Puncture results indicated 6 CSF Oligoclonal bands which indicates Demyelination. My Neurological exam indicated spinal cord involvement. You cannot have this disease without lesions and at some point my MRIs indicated I had MS with the majority of on the spinal cord.
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

          Comment


            #6
            Originally posted by Marco View Post
            I am sorry that you are in this a bad place ... LIMBO!

            There is a precursor to MS named Clinically Isolated Syndrome. Here is information about it: https://www.nationalmssociety.org/Wh...Syndrome-(CIS)

            Approximately 5% of patients are diagnosed with MS WITHOUT lesions depicted on MRI. MRI lesions are not a requirement, but most physicians are extremely hesitant to diagnose MS without them. Being misdiagnosed can be even more damaging that being diagnosed.

            You really need to find a neurologist, preferably a MS Specialist, that can answer these questions for you.


            I wish you well ...
            if this is true- how are the 5% diagnosed if there are no lesions? I know the McDonald’s is just a suggested criteria, but does anyone know how these folks got there diagnosis?

            Comment


              #7
              Thank you for the information snoopy. As usual you are exceptionally informative. So when someone has an attack and can’t move a portion of the body they simply wait? They don’t head to the er? The function of the limb doesn’t return within seconds? I thought I read stories where ones arm goes numb for just a bit. Just wondering what should I do exactly if Something goes numb- wait it out?

              I will continue to pursue testing for now since one doctor already thinks I have ms. But I feel I’m in that limbo state where doctors suspect it might be and are just waiting for a more definitive / dramatic—presentation of symptoms.

              I have read on these forums that often sx appear years before mris show anything. Perhaps that is why this new gp - likened it to pre heart disease - if it makes little difference in the treatment I receive than I suppose the label doesn’t matter. I just keep reading that earlier detection/treatment is better as it may prevent further damage.

              I am 42 with a young daughter I have to provide for and already my mind is racing to - how this will impact my ability to provide? Will I be able to watch her grow up? All kinds of anxiety. (Sigh) I guess there’s not much to do at this point but to wait and get further testing.

              Comment


                #8
                Hi Joe.

                I am 42 with a young daughter I have to provide for and already my mind is racing to - how this will impact my ability to provide? Will I be able to watch her grow up?
                I was diagnosed at the age of 24 with symptoms that go back to childhood. Although I had some complaints as a child I had a parent that called me a hypochondriac and didn't bother taking me to the Dr. for those complaints that I later learned were symptoms of my MS.

                I was married 4 years at the time of diagnosis and we didn't have any children. We went on to have 2 awesome kids who are now 26 and 28. I was always able to take care of my children and did most things "normal" mothers did.

                Although some with MS go to the ER I never have. The only thing the ER will do for MS is possibly give you steroids.

                I have been numb from the waist down, including the girlie parts, a few times. Steroids might be tried but sensory symptoms aren't know for responding to steroids and for that reason Neurologist don't usually prescribe steroids for numbness. The first time I had numbness from the waist down was during the 3 months I was going through the diagnostic process and then another 6 weeks after diagnosis ( I was put on steroids but I also had mobility problems and other symptoms).

                I have had a hand, fingers, toes, go numb and those lasted the majority of the day. I have never had numbness that lasted seconds.

                Just wondering what should I do exactly if Something goes numb- wait it out?
                You need to do what you feel you should do. I would suggest seeing your PCP if your numbness doesn't go away after 24 hours.

                All kinds of anxiety
                Joe, please see a Dr. and get medication to treat your anxiety, you really might see a difference in how you feel.
                Diagnosed 1984
                “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                Comment


                  #9
                  Thank you for sharing some of your story snoopy- it helps to hear others going strong with this disease.

                  U mentioned how u were diagnosed without lesions on MRIs- do u mind sharing if they discovers lesions later on in your journey and at what point in the progression?

                  thanks again for your time.

                  Comment


                    #10
                    Originally posted by Joe23 View Post
                    U mentioned how u were diagnosed without lesions on MRIs- do u mind sharing if they discovers lesions later on in your journey and at what point in the progression?
                    I don't remember when I had MRIs again but it was many years after diagnosis and yes, lesions were found, mostly on the spinal cord which is what my symptoms and Neurological exam indicated at the time of diagnosis.
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                    Comment


                      #11
                      Joe,
                      Please take a few deep breaths and try to relax. It appears you are hoping to get corroborating feedback as confirmation that you have MS and it just doesn't work that way.

                      For example; numbness and tingling is a symptom of MS, but it's also a common symptom of anxiety. Since you are admittedly anxious, most doctors would not consider your numbness presentation as a MS symptom. That's exactly why MS is a differential diagnosis.

                      You need to practically apply what you know to your life.

                      -- We know you have high levels of anxiety and that needs to be treated.

                      That may involve a combination of therapy, stress management, medication, etc. You need this even if your anxiety is caused by MS. Stress and anxiety can really make a mess of your life.

                      For MS, you really need to find competent medical care. Even if your symptoms perfectly matched mine that still wouldn't confirm that you have MS.

                      For newly diagnosed patients, we give them similar advice;
                      - try not to panic
                      - don't overwhelm yourself by reading everything about MS
                      - try to manage your stress level
                      - improve your diet, get rest, etc
                      - try to appreciate what you have instead of being consumed by what limitations you may have now or in the future.

                      I am not trying to be dismissive of your situation, but trying to get you to take a step back and look at the bigger picture.

                      Hang in there...

                      Comment


                        #12
                        I appreciate your feedback Marco—they are good suggestions. Dr has referred me to a psychiatrist to get help with the anxiety and now I have another neuro appointment this month for further investigation. I have no idea what is happening to me and having one doctor tell me she thinks it’s ms without even doing any testing or considering past imaging has me anxious to no end. I know logically there’s nothing I can do but continue to wait and keep pushing for answers or have other symptoms progress— but the fear, anxiety, and loneliness is killing me. Thank you once again for the suggestions and feedback. I genuinely appreciate it.

                        Comment


                          #13
                          I was diagnosed with CIS and I had lesions. One on my c-spine and a handful on my brain. My Lumbar Puncture also came back showing the MS-related results. So based on my clinical presentation (numbness, other sensory issues, L'Hermittes sign), combined with my MRIs and LP, was given the dx of CIS because it was my first flare. There was no evidence of any prior flares, and MS, by definition, is MULTIPLE, and thus far I had only singular. Hence, CIS.

                          Comment

                          Working...
                          X