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Avatar universal

Could I have MS and not ‘just fibromyalgia’?

Hi, 11 years ago I was diagnosed with fibromyalgia, but my symptoms keep evolving and keep coming! I just found in my records that my neurologist wants to rule out MS vs Lupus vs just problems caused by fibromyalgia.

I have a + ANA, speckled, High sediment rate high C-reactive protein.
I go see my neurologist for follow up next month so I’m making a list of points to keep in mind when investigating. This is my list.
* Had food in my mouth but couldn’t make myself swallow. Needed water in my mouth to make it happen. Occurred multiple times on same night. Had happened about 4 or 5 other times very stretched out that I can remember.
* Numbness/tingling in right foot has increased in intensity, and now encompasses the tops and tips of all toes.
* Numbness in left foot is starting to mirror the right foot but not as severe.
* Joined fitness club at Weymouth club, and every time I start to try to exercise on the treadmill my feet go completely numb.  Bilaterally
* Every time my feet/fingers are cold they hurt really bad and become numb.  My toes feel like painful hard sausages. My fingers are cold white and painful. No amount of socks seem to help.
* still get numbness in left arm- pins and needless. Pinky and ring finger mainly affected out of fingers, but all do go numb occasionally just not at the same time.
* Knees, ankles, hips and back hurt so bad when I’ve been walking for a while, like a short trip to the mall for instance. The bottom of my feet feel like they are being hammered with nails like Jesus on the cross. It has me gasp and fall over. Many of my friends and family have seen this happen to me. My knees hurt so bad I decrease range of motion and limp around. Typically it will be both knee and ankle on the same side that flare at a time.
* Had carpal tunnel release surgery after median nerve injury from steroid injection attempt in pain clinic.
* Constantly cursing in my head bc of pain. Every thing hurts all day.
* Random mouth sores not related to the grinding of my TMJ. I’ve had 5 separate sores that lasted a week since Christmas.
* Decreased sexual function- dryness and odd difficulty to orgasm- sometimes completely incapable
* See black spots randomly or other times I see stars randomly.
* Got Botox for migraines on Mar 16th as the nerve blocks were becoming less affective. Migraine pain always on left side behind eye and in ear.
* So tired!!  I’m used to being tired/fatigued. I had a sleep study done in 2007 that diagnosed me with borderline narcolepsy, but lately it’s been crazy! Every afternoon I want/need a nap.  I’ll be holding my son and bouncing him while trying to entertain my daughter and literally fall asleep standing with my son in my arms.
* Back pain- all of it!
* Feet hurt in the am- feel and look like an old woman getting out of bed. If I don’t stretch enough I fall back into bed. Have to take it slowly. Feet and lower legs very stiff.
* Heartburn often
* Dry mouth, and skin
* Muscle spasms? A random muscle will twitch and twitch and last for 1-3 minutes. Muscles such as: eyelids, thumb, inner thigh, upper lip, leg
* Husband says I have restless leg syndrome, constantly moving my legs in my sleep
* Bruising!! Every day a new bruise and I have no idea why! ALL over my body, even my breast twice!
* Difficultly remembering stuff- especially words, and dyslexia symptoms increasing
* Car sickness/nausea and lightheaded
* Continued vertigo
* Random right flank pain- like stabbing
* Lots of pain at waist and shoulders and mid back and neck from chest
* Continued cycling between being ok to being severely depressed with thoughts of suicide- working well with my psychiatrist
* Face is always itchy?

Past history
* Odd ?migraine? Where I was talking to my husband, got really extremely happy for no reason, then suddenly I was repeating my words mid-word or even saying a sentence and stopping half way through and repeating the same sentence again, and inability to get the words I wanted to say out of my mouth, and I was talking really slow.  Continued that night and repeated the next day. Has only happened 2 times since.
* Rashes that dermatologists couldn’t figure out why or what they were. Started at 16 years old and repeat randomly, especially during times of high stress. They were round, dry, red scaly. All over my trunk and chest. Most recent as of prior to birth of Keith.
* Hives, hives, hives! All the time. For unknown reasons. Most recently my hives were different. They come and last for a week spreading and forming one huge super hive all over me. When they disappeared they left bruises. They were painful not itchy. Went to VA Er for them.
* I’m also getting pressure hives. Appear at end of day when I get my pjs on and itch a bunch all night but are gone no sign left by morning.
* Got really bad diarrhea in 2015 and lost 25 lbs in 3 months- many tests done and all we could come up with was ibs.  I still get bouts of bad diarrhea. Very painful. When I’m not having a bout of diarrhea, I’m super constipated, and need to take Colace.
* Severe preeclampsia two times
* Lymph node on right side back of neck hard and swollen for at least 12 years now

There’s way more missing from the list, but I just wonder, could I actually have MS? How would we figure it out?

Thanks!
4 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

Fibromyalgia can mimic or even overlap many other conditions, Lupus and MS are typically investigated and each have specific suggestive/consistent diagnostic evidence to make either condition more likely. In regards to MS there is more that you have mentioned that would not be suggestive/consistent, so i don't think MS would be a likely alternative although i honestly don't think Fibromyalgia fully explains everything you've been dealing with so i would suggest getting a second opinion with a rheumatologist to reassess your diagnosis and or provide alternative treatments that may work better for you.

This is a good Fibromyalgia resource that may be able to provide some answers.... https://www.fibrocenter.com/understanding-fibromyalgia

Hope that helps.....JJ
1756321 tn?1547095325
My hives show up when I am hyperthyroid. I have Hashimoto's thyroiditis and have had Graves antibodies show up for two months as well. Elevated thyroid antibodies are often associated with chronic hives. Studies report that as many as 57.4% of patients with hives have the presence of thyroid antibodies.
Avatar universal
Thanks. It’s just so frustrating to keep having a NEW symptom greatly disable me almost every 6 months, and slowly stop, and then a new thing attack me. Some things are constantly there, like pain and sleeping and the migraines.

The military tried to make me feel so bad about myself for having been diagnosed with fibromyalgia after my attack while active duty. And my own Father still says it’s all in my head and I’m making things up to get out of things bc I’m lazy or whatever, so you can see why I don’t feel so glad to have fibro as my diagnosis bc I still feel like it’s not “real.” As if a different diagnosis will make my disabilities more valid in others eyes.

My Mom is on my side and works with someone with MS and the two of them swear I have it too. Then when I saw my neurologist wants to do a LP to see if I have MS it made me question.
1 Comments
I think this sounds like a good idea to follow up on your neurologists recommendation.  It has to be hard to not have answers.  Hope that helps provide some.
987762 tn?1331027953
COMMUNITY LEADER
I've never understood why people dx with Fibro get such a hard time having their condition understood, unfortunately there will be some individuals who might disbelieve your condition, but there will be many others who will love and support you, only allow your supporters into your head space, don't allow the naysayers to bring you down!

One lady i know has had a similar situation with her father all her life, she was dx with Juvenile Arthritis as a child, others dx with Lupus, MS, CFS/ME, Mental Health issues, Asperger's, Migraine etc etc etc are also disbelieved by people who know very little to nothing about their diagnosed condition....unfortunately some people would rather have a negative opinion about someone they have no right to critic than get off their 1900's ignorant soap box and stop making insensitive or ignorant comments....

An LP will only add weight towards alternative conditions when added to all your other suggestive/consistent diagnostic evidence, neurological clinical signs, symptom types and pattern etc and in regards to dx-ing MS, you need MS suggestive/consistent brain and spinal cord MRI's....IF your brain and spinal cord MRI's are not showing lesions, an LP alone will not be of much help in determining if it's MS or not because an LP is not an exclusive test even if it does show OBands, Obands show up in a number of neurological disorders as well as infectious conditions.

General protein can be slightly elevated in MS patients, Myelin Basic Protein is typically elevated due to the destruction of myelin lol sorry it is complex and more than you probably need to know at this stage, just try to keep in mind that a lot of the types of symptoms you've mentioned are not typically associated or suggestive of MS eg hives, bruising, pressure soars/hives, swollen Lymph nodes, Rashes, Heartburn, Dry mouth, and or skin, short lived random muscle twitches, mouth sores, carpal tunnel, all over pain, visual issues like random black spots or stars, bilateral symmetrical numbness, joint pain/stiffness, digit swelling, narcolepsy, + ANA, speckled, High sediment rate high C-reactive protein.

Don't get me wrong, i'm not saying nothing else could be going on, in fact i actually don't think Fibro completely answers what's been happening with you and i suspect it's only one piece of your medical puzzle but a neurological condition like MS is less likely compared to many other conditions where these issues are more common eg Lupus, Lyme etc so try if you can to keep a very open mind on what else it could be..

Hope that helps.....JJ

2 Comments
Yes, supermum! I am not offended at all. Actually everything everyone has said has helped me overcome my temporary freak out over issues! I’ve thought I have lupus more than MS, but then after this past week when I went for my surgery 3 different doctors at 3 different occasions during my pre-op evaluations asked me if I have MS, combined with my Mom’s insistence on the matter and the note from my neurologist in my record I began thinking MS a high possibility again.

Thank you all for your support and understanding. It helps to be able to talk to people whom have invisible diseases as well and be understood.

I saw a Rheumatologist recently, and I’m 100% sure she was doing her internship (not a full fledged doctor) and she literally told me that everything from my hives and lupus like skin rashes to the fact that I cannot feel my feet (which was proven by emg) was all caused by ptsd. Aka all in my head?! Whaaaat?
Please note the Rheum was at a VA hospital. The VA is under investigation again for malpractice and mistreatment of veterans. They are apparently hiring physicians that have lost their medical licenses, and doing other awful things like reusing needles etc. but unfortunately as a 100% disabled veteran I am only allowed to go to the VA unless they can’t get me in for a needed issue within 30 days.
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