Is There a Connection Between Fibromyalgia and MS?

Is There a Connection Between Fibromyalgia and MS?

I’ve often wondered if there may be a connection between fibromyalgia, multiple sclerosis (MS), and other neurological conditions.

Back in the early 1990s, my doctor suspected fibromyalgia as the culprit for my fatigue, aches, and pains. At the time, doctors diagnosed fibromyalgia by the use of tender points. Additional criteria have been added to diagnostic guidelines since then. But in those days, the doctor would assess a patient by applying firm hand pressure to 18 specific areas of the body. If 11 of those 18 tender points reacted with additional pain, then the diagnosis was fibromyalgia.

I did have added pain with the applied pressure, and my doctor considered diagnosing me with fibromyalgia. But she decided against it. She reasoned that I might not be eligible for disability support in the future if I had fibromyalgia registered in my chart. I’m glad that she didn’t give me that diagnosis because I had no problems receiving disability payments when I was finally diagnosed with primary progressive multiple sclerosis (PPMS) in 2010.

During that in-between time, when I was unsure if I had fibromyalgia, I told friends about my possible diagnosis. My friend’s husband had received a diagnosis of fibromyalgia. I recently found out that he later developed Parkinson’s disease. So was fibromyalgia a gateway to his Parkinson’s — and also to my PPMS?

Discuss the latest research in the MS News Today forums!

I am aware of many people with fibromyalgia who do not progress to other diseases. But what if there is a connection, even a slight one? That knowledge could lead to earlier diagnoses of other disorders and further research into neurological diseases.

Multiple Sclerosis News Today reported on a Canadian study in July 2018 that looked at the early warning signs of MS. Researchers found that fibromyalgia, a condition involving widespread musculoskeletal pain, was more than three times as common in people who were later diagnosed with MS.

A post on the Fibromyalgia Awareness blog lists symptoms that sound very familiar to those of us with MS: brain fog, pain, fatigue, and insomnia. Triggers, such as infections and stress, similar to those associated with MS, are also mentioned.

The blog dedicates a post to an episode of “The Dr. Oz Show,” where guest expert Dr. Sean Mackey explained that “fibromyalgia is probably not a disease of the muscle, joints, ligaments or tendons. But instead, it is fundamentally a disease or condition of the brain.” He added that with fibromyalgia, nerves could process normal sensations differently causing “excruciating pain.”

It is apparent to me from online searches that I’m not alone in my curiosity about a possible “fibromyalgia connection.” I’ve found blogs and articles that compare fibromyalgia and MS. The main difference seems to be that lesions are found in the brains of MS patients, whereas those diagnosed with fibromyalgia don’t have lesions. This article also points out that MS is an autoimmune disease while fibromyalgia is not.

I still wonder, though, if despite these differences, are the similarities enough? Is there enough anecdotal evidence to consider fibromyalgia as a starting point for other diseases? And if there is, could that knowledge be of help to MS researchers?

Please join this discussion in the Multiple Sclerosis New Today forums.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

74 comments

  1. MS Owens says:

    Good article but I wonder, was it fibromyalgia at all or early signs of MS? I have pushed back against my rheumatologist and neurologist, I feel like it’s too easy to diagnose me with fibromyalgia versus to keep searching. I had a “ms like episode” at 20, then developed fibromyalgia around 24. I’ve had two more “neurologic flares” in my early 40’s. Inconclusive MRIs. I guess time will tell but I do hope they look into the link further and if this isn’t early warning signs. Like a canary in the mines.

    • Debi Wilson says:

      Yes,exactly MS Owens! I too believe it was MS from the start. It would be great if they could diagnose and treat people sooner! Thank you for your comments! Best to you,Debi

          • Ellen says:

            I commented but don’t know if it ever showed up. I had an MRI at one hospital and there Gadolinium is not used routinely any more. Then for next MRI I switched to an ms specialist and went to another hospital, a university hospital, where gadolinium is only what is used. How do we patients get the idea through that we want an alternative? There is one.

          • Debi Wilson says:

            Hi Ellen,
            I’m not sure why your other comment didn’t show up. That’s a good question and I can tell you what I did. The first visit to my new neurologist I told her upfront that I didn’t want to use Gadolinium.She quickly replied that they have an alternative contrast dye, so I agreed to have the contrasting MRI.If they didn’t have an alternative I would’ve had her suggest another hospital that didnt use the Gadolinium. If she couldn’t,I would’ve found another neurologist or not had the contrasting MRI. I think the more people reject it, neurologists willget the message that they need an alternative.
            Thanks for your question,Debi

        • Elle. says:

          One of the hospitals I had an MRI at said they don’t use Gadolinium any more b/c of concerns, Then I switched doctors and had next MRI at university hospital and I asked about contrast to find out they use Gadolinium ONLY. Rather disconcerting to me.

      • MS Owens says:

        Yes! I see a direct line to/from my neurological flares! I understand my neurologists reluctance to diagnose me with inconclusive MRIs. One more flare and I’m assuming I will be and I am working closely with my neurologist and I really like her, so I’m sticking with her. I also have RA and both the neurologist and rheumatologist always like to talk about fibromyalgia but it just seems like I have such bigger concerns, I wish they wouldn’t constantly put it on fibromyalgia. I suppose time will tell. Neurological flare #1 and #2 (the ones that started in my early 40s) were about 18 months apart. I’m right at 12 months since my last flare, so time will tell I suppose but it is hard to live in limbo-land.

        • Debi Wilson says:

          I agree, MS Owens “limbo land” is terrible. I was there for years before my PPMS diagnosis. Good luck to you, Debi

          • MS Owens says:

            Thank you Debi, I’m sorry about the PPMS diagnosis. It’s very frustrating on some level. You’re fine, you’re fine, you’re fine, maybe you have psychiatric problems, you’re fine. Oh, never mind you have this awful disease.

        • Kat Mac says:

          Hello. I was diagnosed with fibromyalgia, rheumatoid arthritis, psoriatic arthritis and chronic fatigue syndrome 10 years ago by my rhuematologist. I know what my flares are like, I just had one that lasted more than a week. Could you tell me what the MS flare feels like? I need to find a good neurologist. My mother, her brother, her father and my father’s brother all died from Parkinson’s disease. When my mom was diagnosed they didn’t seem to have good tests to determine it and they just based it on her family history.

        • Janet says:

          May I ask what the flares were like? I have fibro but feel there’s more going on. The MRI came back negative for MS.

    • Sandra says:

      I certainly hope there isn’t a connection. I have Fibromyalgia and SLE and I certainly don’t want to add MS to the mix. However I do find this interesting.

    • SPMS & FIBRO WARRIOR says:

      I have fibromyalgia and SPMS. I believe they are related. I now used an electric wheelchair and very limited walking ability with a walking frame. I am only 40

  2. Scott Chase says:

    I sincerely believe there is a connection between Fibromylagia, parkinsonism/PD, allergies and autoimmune diseases (including MS). There are common gene mutations that cause a dramatic drop in dopamine (e.g. gs224). I had terrible Fibromylagia pain & neurological symptoms (so many MS-like symptoms), until I was easily treated with a simple generic drug to restore dopamine levels (levodopa-carbidopa). Severe allergies, parkinsonism, Dopa-responsive dystonia, and autoimmune diseases all run throughout my family (including MS). Do different combination searches on these terms. I believe the common link in some cases and families may be genetic dopamine-deficiencies (e.g. gs224).

    • Justine Cameron says:

      Hi Scott,

      Our family is very similar with a history of Dopa Response Dystonia, Fibromyalgia, Allergies, Food sensitivities and intolerances. We have wondered for a while if everything is related therefore really interesting to read this.

      Thanks
      Justine

        • Pat Dalton says:

          I have been diagnosed with fibro by at least 6 drs of all kinds. Now this week one has added polymyalgia also. Only difference is much more relief from the prednisone than the pain pills and injections of lidocaine. What’s a girl to do? No cures and I am 75 so I will never know if dx was correct!

    • Scott Chase says:

      The dopamine connection is just starting to be considered by researchers: ‘The Dopamine Imbalance Hypothesis of Fatigue in Multiple Sclerosis and Other Neurological Disorders’. I was told by my neurologist that there was no reliable test for a dopamine-deficiency, and that a trail of levodopa was the only way to know if it would be effective. I’ve been very fortunate to have had a 90% reduction in neurological, pain, muscle, fatigue and other Fibro symptoms, with simple levodopa treatment. The possibility of prophylactic effects of levodopa treatment might also be a consideration.

  3. Michelle Benoit says:

    I have been diagnosed with both fibromyalgia and MS. Not only did they do the trigger point test, I’ve also had a blood test that confirmed fibromyalgia. About 2 years later, it was suggested to me that I needed to be tested for Ms after an EMG, where the doctor said he had never seen such little nerve condunction in anyone under 70! I went to a neurologist who ordered all the tests, then she went on maternity leave. While she was out, I checked my results online, and both the MRIS and spinal tap confirmed MS. When she finally came back, she met with me and told me I do NOT have MS, despite the test results. I waited about a year, and when my symptoms started adversely affecting my mobility and ability to work, even from home I sought a second opinion. I found out I do have MS and also fibromyalgia. They seem to work together to kick my butt extra hard. I have been essentially bedridden since the beginning of the year. Doctors don’t wanna help, it seems. Before my MS diagnosis I had a small pain prescription. Since the Ms diagnosis, I am getting nothing but antidepressants for pain? I do talk therapy and physical therapy and yoga when I can. It may make a small difference but really not enough.

    I really believe the 2 are related.

    • Debi Wilson says:

      Thank-you for sharing your story, Michelle.I am so sorry for what you are going through, I can’t imagine! Blessings to you, Debi

    • Scott Chase says:

      Michelle, I went through a similar back & forth for 18 months, about four years ago. In addition to being diagnosed with Fibromyalgia (trigger points, pain, fog, etc.), I also had many MS-like neurological and muscle symptoms. Since my brother has MS, I therefor had multiple MRI scans, which to everyone’s surprise continued to came back negative. I was in miserable limbo during those 18 months, and even had a Rhumatologist tell me there was nothing else that could be done. The one additional clue was that I also had twitches/tremors in my fingers, which I previous had a GP simply called “interesting”. My neurologist was willing to try the levodopa-carbidopa treatment, and it worked to calm my muscles and get the nerves better functioning again. A sufficient dopamine level is critical for nerve & muscle functions, in addition to so many other things. A dopamine-deficiency should be considered, especially when there are telltale signs, like twitches and/or tremors.

      • Cristina says:

        I’ve been back and forth for 2 years as well with still no definite diagnosis. I’ve had MRIs that show lesions but the spine tap was not conclusive with MS.so they believed the lesions could be due to trama since I had an accident a fee years back. Now I’m needing to see a neurologist to check on the lesions. But I also have wide spread trigger point pain thag got me thinking it might be fibromyalgia as well or instead of MS. Its all very confusing. There is so much guess work. I just want amswers. :/

        • Debi Wilson says:

          I understand Christina, receiving my diagnosis of MS took years,it was very frustrating! I hope that you will receive a diagnosis soon so you can find out what you are dealing with. Best to you, Debi

          • Cherri Suchanek says:

            Just a question ? Has anyone had to have the needle test from a neurologist done for Fibromyalgia diagnosis? After many years of horrible pain I was diagnosed in 2000 with Fibromyalgia things only went down hill from there !! But I’m curious about the needle test ?? Was VERY PAINFUL

          • Debi Wilson says:

            Hi Cherri,
            Are you talking about a spinal tap? I haven’t heard about that for fibromyalgia only MS. If you had that done they were probably ruling out MS.
            Thanks for your question, Debi

    • Leslie says:

      My doc ordered a regimen of antiviral acyclovir and and antibiotic. It really made a significant difference in the neuropathy. Not sure why it works.

    • Andrea says:

      To my nursing knowledge and personal experience there is no blood test for fibromyalgia. MS is diagnosed by specific proteins found in spinal fluids and or lesions on the spine or brain ( Central Nervous System). My neurologist says I have a genetic neuromuscular disorder that affects my Sympathetic Nervous System (the one that controls your fight or flight responses). I also have peripheral neuropathy (nerves in arms and legs), Fibromyalgia and Chronic Fatigue Syndrome which the CDC has now declared to be an exercise intolerance disease rather than a Syndrome (a Syndrome is a group of common symptoms). I get weaker every year. I will be 60 this year. I have been on social security disability for 5 years. I went to a Muscular Dystrophy Clinic at IU Neuroscience center, the neuro specialist told me there was nothing she could do for me. So frustrating! I too believe there is some underlying connection not yet discovered. The dopamine thing makes since to me. I hope I don’t get Parkinson’s but it would surprise me. I know 2 women with MS. I have all the same symptoms especially since fibromyalgia symptoms are so similar, but yet I tested negative for MS. The government and other organizations should be doing much more research as so many people are becoming disabled.

  4. Chloe Reid says:

    I seem to have done it the other way round. I’ve been diagnosed with RRMS for 10 years, but last year my wonderful physio was the one who finally listened to me regarding my widespread joint and muscle pain. All rheumatology tests come back inconclusive, so they put it down to the MS – neurologist says it’s not. Repeat a few times over a few years! Just in an idle chat at the end of a session, my physio asks more questions about this. She suspects fibromyalgia developed after the MS. Did I want another referral to rheumatology, to go through it all again…? No thanks. We agreed the best approach to treatment is what I’m currently doing for my MS anyway, and I’m already taking more meds than I want. I don’t need another label – it’s just so nice to have someone listen properly and take these aches and pains seriously!

    • Debi Wilson says:

      Hi Chloe, I’m glad you found a good doctor that will listen to you! But, I am sorry thatbyou have to go through so much pain. Thank you for sharing your story with us! Best to you, Debi

  5. Steve says:

    Very interesting article. My dad had MS for 30 yrs before passing away a few years ago. In 2000 I was diagnosed with fibromyalgia and had always wondered if there was some sort of link between the two. Also, 3 years ago my mother was diagnosed with ALS and has since passed away. I had asked her neurologist if he thought it was odd we all had 3 different diseases and he kind of just shrugged it off.

    • Debi Wilson says:

      Hi Steve,thank-you!
      That is interesting about your parents, I really do feel there is connection. Thank-you for sharing your story! The best to you, Debi

  6. Boni S Leszczuk says:

    I started getting tested for MS when I was in my early 20’s but they could never get a positive so they tried other things and everything came back negative so they just said must be fibromyalgia even though I never really had the tender points just pain and horrible spasmic muscles and headaches and nerve issues. I kept going back and forth with different doctors and neurologist. With no positive for anything until last May 2018 when I got a positive for MS even though they said some of my lesions were a-typical. I do wonder if these early symptoms were a warning or an early sign. It is hard to find a good doctor who understands my story and my history and path because I have been in pain so long and have learned to live with it with medicine because I also am bipolar and take a lot of meds for that so I can not add a lot of new medication. It took a long time to find my meds for my mental health and now I am struggling to find meds for my MS and it is just beginning. Maybe in the future there be a better way or another way to diagnose or ways to define the path to MS…. I don’t know if I am saying this right, but thank you for letting me speak my mind.

    • Debi Wilson says:

      Thank-you for sharing your story, Boni! I know how frustrating it can be and i’m sorry you had to go through that! I notice you signed up for the MS forums today, I’m glad we can chat there also!
      The best to you, Debi

  7. Margaret Hamilton says:

    I’ve often assumed that fibromyalgia is also an autoimmune disease. Do we know if it affects more women than men (like other autoimmune conditions)? I’m afraid the medical profession is still too quick to dismiss early presentation of vague symptoms like pain & fatigue as signs of mental problems like depression and/or anxiety.

    • Debi Wilson says:

      Hi Margaret,
      From what I’ve read, fibromyalgia affects women more than men, the percentage is even as high as 90% women.
      Yes you are correct, the medical profession can easily dismiss vague symptoms. Thanks for your comments! Best,Debi

    • MS Owens says:

      I think Fibromyalgia is not considered an autoimmune disease because it doesn’t cause damage and isn’t degenerative. My understanding is an autoimmune disease is your own body attacking itself (I have RA as well as possible MS). My rheumatologist said it’s basically a pain disorder. It does affect women disproportionately though.

    • MS Owens says:

      My understanding is Fibromyalgia is not considered an autoimmune disease because it doesn’t cause damage and isn’t degenerative. My rheumatologist said it’s basically a pain disorder. It does affect women disproportionately though.

      • Bone pain is my name says:

        I have had severe pain, the dr asked me if the pain was in my muscles or joints. I said neither, it feels like bones are breaking from the inside out. It was horrible bone pain. They tried me on all of the 5 different meds for fibromyalgia, lastly being Lyrica. It was like a miracle drug for me. But I wonder if the diagnosis is correct, because no one else has said it was bone pain with the cause being fibromyalgia. What do you think?

  8. Lauren says:

    Lots of interesting information here. I just wanted to add my experience with fibromyalgia. I was increasingly having balance issues. I saw five neurologist who ran numerous tests oh, and there was some question that I possibly had MS. It was ruled out, however. On my own, I researched balance issues and fibromyalgia and learned that it frequently appears and is often due to a B12 deficiency. By the third week of receiving B12 injections my balance issue was gone. I remember reading how B12 injections are also very helpful to many people with MS.

  9. Juanita Russell says:

    I’ve had fibromyalgia for more than 29yrs MRIs and scan all normal never had a spinal tap but if you surcharge all fibromyalgia symptoms I have 90 precent of them I use cymbalta tramadol and just started a new injection for migraine I have balance problem but I take a medication for essential tremors were my hands tremor and my head bobs up and done also my chest plus my voice changes the difference between these and Parkinson is tremors for Parkinson get better with activity esitial tremors get worse with activity

    • Scott Chase says:

      Juanita,
      My family story sounds similar to what you’ve described. I am so grateful that I saw a neurologist at age 50, who helped recognize that what I had may not be MS [yet], or PD [yet], or even an essential tremor [yet], but rather parkinsonism resulting from low dopamine production. I still believe there is a chicken-egg link with much of it, as genetic-causes of low-dopamine can be a risk-factor for future PD (etc.). If Carbidopa/Levodopa therapy resolves a tremor, it is actually not an essential tremor, but a tremor resulting from low-dopamine. In my case, it resolved head/neck & movements symptoms, MS-like neurological & muscle symptoms, as well as most Fibromylgia symptoms too. I am so thankful for my neurologist, who was willing to attempt the Carbidopa/Levodopa therapy, which has been extremely effective in my case.

  10. Julia says:

    I have been diagnosed with fibromyalgia for many years . In 2013 I had so much pain and fatigue and the doctor I was seeing said go talk to someone it is just fibromyalgia. Well hadany test neurologically they said I had white matter brain and all of other tests were fine . A few months later diagnosed with stage 2b breast cancer …. I have had migraines that come with full blown light shows aura and pain I’m my temples sometimes stabbing and crawling feeling in my wrist under my skin . Most recent MRIS showed 3 lesions which they are saying are just from migraines . I often wonder I have twitching and tingling in my cheek and eye. I am currently receiving Botox for migraines. Always wonder about the lesions…..

    • Debi Wilson says:

      That is interesting, Julia! Diagnosing is like a puzzle sometimes, and frustrating! Thanks for sharing!Best to you, Debi

    • Scott Chase says:

      Julia,
      I also had twitching in my eyelid, lip & cheek, as well as tingling & numbness that would come & go in my face, arms, fingers & legs. I had terrible headaches, too. Doctors thought the headaches were just migraine headaches, but we later discovered that many were a result of the muscle spasms & knots in the shoulders & neck, because the nerve signals to my muscles were impaired because of my low-dopamine. In my case, nearly all of these neurological & muscular symptoms were the result of a common, genetic, dopamine-deficiency. A simply trial of inexpensive carbidopa-levodopa therapy restored my dopamine levels, and has been extremely effective in resolving a myriad of symptoms for me.

  11. Peggy says:

    Was diagnosed w/fibromyalgia in 1996. Fibromyalgia is very much an autoimmune disease! Was forced to retire in 2012 due to fibro & have been receiving disability since 2015. Fibro is recognized as a permanent disability.

    • Debi Wilson says:

      Hi Peggy!
      I am very glad to hear that now people can claim disability with fibromyalgia! With my research I didn’t find anything that said fibromyalgia is an auto immune disorder , But it doesn’t surprise me that it is! Thank you for your comments,Best wishes to you, Debi

  12. Trisha says:

    There’s a huge connection! Mitochondrial dysfunction! It’s why some people with MS have such success with the Wahl’s protocol. It supports the mitochondria. Same with fibromyalgia mitochondrial support makes a huge difference. We’re just scratching the surface of understanding mitochondrial dysfunction and how many disease processes it causes

  13. Nyk Kelly says:

    So glad to have read this! I was diagnosed with fibromyalgia in 2000. At that time, doctors despised this diagnosis. I’ve had less than 5 decent doctors during and since…
    My balance has been horrible, I had a rash which turned into an autoimmune nightmare.
    I’m certain I had fibromyalgia YEARS before diagnosis, since I REALLY LOVED to work.
    I now live in a very rural area, with little or no specialists anywhere near our area…
    Thanks again. It’s nice knowing, at least, that what you believed, may indeed be true.

  14. Ms Barbara says:

    When I first started to show symptoms of ms they had no idea what was wrong. I had “unusual” symptoms. I don’t think f b was known yet. They started telling me it was all in my head but I should see the dr every month. I was also told at that time the only way to know for sure if you had. Ms was an autopsy! Finally a doctor did an awful spinal tap and tested the liquid and my diagnosis was “possible ms”. This started way back in 1977. My ms has progressed very slowly and for that. I am very grateful but the nerve pain is unbelievable. The progress that is being made today is fantastic and hopefully we are close to the cure. Thanks for listening to an old lady surviving ms.

    • Debi Wilson says:

      Hi Barbara,
      Thank-you for sharing your story! I am glad that MS has been moving slowly for you. I can relate to what you said about Doctors thinking it’s all in your head. Isn’t that frustrating! I feel we are close to a cure also, that day will be amazing! Best to you! Debi

  15. Donna says:

    I was diagnosed with fibromyalgia at 24. When I hit about 50 I was falling with dizziness, vertigo, postural hypotension, bladder incontinence. I had a complete workup with a neurologist who specializes in MS. It’s not MS. I have Pernicious Anemia. I am being treated with loading doses of B12 and I am healing. I was also deficient in vitamin D. Since bringing my levels up my pain is considerably less.

    • Debi Wilson says:

      That is amazing Donna, I am glad that your doctor discovered the problem. Thank-you for sharing your story! Best to you, Debi

  16. I was diagnosed with RA back in 2015 after a major flare up,some swelling in all joints PAIN every where. I had a seizure disorder since 2010 as well and did have a seizure at the time of the flare up. I was started on methotrexate and had a reaction then put on other meds..had the 2015 attack and got my diagnosis but had pain like someone was pulling my nerves out of my body in all areas trigger point diagnosed with Fibro. I do have family with diagnosis of MS ,I think there must be some connection….

    • Debi Wilson says:

      Hi Christine,
      I’m sorry for all you have been through.It does sound like there is a connection between fibromyalgia and MS in your family. Thanks for sharing your story! Best, Debi

  17. Linda says:

    I, too, have lived a life full of pain, dizziness, neuro problems like electrical zaps in various places and muscle spasms, spinal pain from top to bottom, chronic leg and ankle swelling, a-fib, hearing loss, and the list goes on. I started with some of these symptoms in my early thirties and my doctor said I had an exotic phenomenon. I have flares that make me look like I’m having a stroke where the left side of my face, shoulder, ribs and sometimes down to my heel, feel like novacain wearing off and my eye and corner of my mouth droop. It wasn’t until the 1990’s that I was diagnosed with Fibromyalgia. I was relieved that my condition was validated. But that diagnosis has become a waste basket diagnosis. I am now 69 and have gone through so many tests, MRIs, some with contrasts, ( which show bulging discs but nothing is ever done for that). I have an appointment with a neurologist this week as my latest symptom has been excruciating right ear pain flares with no “apparent “ reason. I’ve had two doctors tell me it’s Post Herpetic Neuralgia from shingles. I had a neurologist put me through all the painful tests, including a spinal tap as well as a sleep study. When I returned for my follow up all he said was that my urine tested positive for marijuana. I don’t use it and am never around it or any other illicit drugs. I believe my urine was switched with another patient’s at the sleep study. He offered no other information at all . That was 20 years ago and the records have been destroyed. At the MS Center in Atlanta I had a compassionate doctor who said she didn’t think I had MS but I did test positive for an autoimmune disorder. Interestingly my ANA shows positive at times and negative at times. I feel my symptoms line up with MS. I don’t necessarily want that diagnosis but sure would like the right help as I’ve tried so many meds and had so much physical therapy.

    • Debi Wilson says:

      I understand you don’t want the diagnosis of MS, but you do want to know what’s going on. And,it is good to have a name put to what you’re feeling, so you can deal with it. Good luck to you, Linda! Debi

  18. Gretchen Laubach says:

    I have been diagnosed with fibromyalgia, sjogrens- my neuropathy has gradually worsened.
    during the time I was in the diagnostic phase of the disease. I had an MRI of my brain and the physician had noticed that I had a plaque on one side of my brain. The physician commented that he thought I had MS but changed his mind as with MS, plaques are on both sides of the brain.
    any comments?

    • Debi Wilson says:

      Hi Gretchen,
      MS can be difficult to diagnose.if you haven’t already a second opinion may be a good option. Thank-you for sharing! Debi

  19. Robyn Marzoni says:

    I am glad to have come across this article. I started having problems about 4 months ago. I was a power lifter and worked out with some pretty serious weight. I slowed down a bit after my right wrist started to bother me. Then it started becoming numb in my sleep to the point that it would wake me up. I told my GP and she said we would keep an eye on it. I then got sinusitis and was sick for about a week and a half. Out the middle of nowhere my left hand started feeling like my right. Followed by problems with my neck and back. GP said fibromyalgia. I got to the point where my arms were so weak, I could not dry my hair. This wasnt long after I set a personal record of dead lifting 230 pounds. Went from that strong to not being able to hold a blow dryer. The neuro I saw did a cervical spine MRI as he was certain it was a disc and results were negative. He referred me to another neuro after saying MS could be possible but he was certain it wasnt fibromyalgia.
    About a week ago the internal shaking started. I feel like I am constantly on vibrate. For a few days, I feel fine for the most part and then other days, I feel like I got hit by a truck especially in the morning. All 15 blood work panels came back normal so no lupus or B12 deficiency. I am 2 weeks from a brain MRI and EEG. I just feel scared and not sure how to relate to anyone as “undiagnosed”.

    • Debi Wilson says:

      Hi Robyn,
      I’m sorry for all you have been going through! I hope you are diagnosed soon so you can put a name with your symptoms. I know how frustrating it can be to have symptoms for years and they can’t figure it out. Take care of yourself and thank you for sharing your story! Debi

  20. Angkaystiver says:

    Some have mentioned a zapping feeling . I have had cycles with the feeling of being shocked . It runs through my head neck and chest with a buzzing sensation. I was suspecting ms as my symptoms were getting worse but ended up with stage 2 breast cancer. After surgery and chemo the nuerapathy was horrid for years. Had a CTscan but no lesions. Medicaid denies MRI’s. Got disability for fibro but I think it’s more then just that. If anyone can reccomend drs in southern Oregon I am new to the area.

  21. Chere says:

    I was diagnosed 25 yrs ago with FMS. I found this very interesting reading. I also have DDD (degenerative disk disease),DJD ( degenerative joint disease), plus normal B/P stuff etc…
    My dad has Parkinson’s and I worry about getting that.
    My FMS is controlled very well with Savella but I do get flares, those are bad. Will be interesting to see if they get a link that shows this is all precursor for MS or who knows what.

  22. JoAnn says:

    Interesting. When I first “got sick” doctors couldn’t figure out what it was. I had a lot of nerve pain and all the other stuff that goes along with fibromyalgia. My doctor did do a spinal tap. I had one and a half bands of the protein that is present when you have MS, in my spinal fluid. If it had been two bands the diagnosis would have been MS, but because it was only one and a half, it was not. I was later diagnosed with fibromyalgia. However, later also diagnosed with SLE. There is more going on between all these diseases. Whether it is environmental issues or whatever, there is a correlation.

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