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Avatar universal

multipel sceloris dx

HELP, any advise??????????????????
I have major fatigue, blurred vision, loss 70% use of my right hand in last year, numbness in face/hands/legs/feet, trouble swallowing, pain in throat, major dizziness, major cognitive issues - memory, creating sentences, concentration, pain, amoung other issues.
I have been reading all of the above comments and was hoping for some advice? I have much of the same symptoms everyone has listed above. I have been dx with Graves Disease that was treated with RAI and I am now Hypothyroid since 2008 and Fibromyalgia 20 yrs ago but in the past 10 years all my physicians say I present with MS symptoms. I have seen at least 6 Neurologists since then. One at the Mayo clinic who just said I had Migraines, duh I knew that so he was no help. All the others see Fibromyalgia as a diagnosis and do not take my symptoms serious which is so frustrating!!!! I was recently seen at Shands in Gainsville and once again just not taken seriously. I have no lesions on brain but I have done much research that says they do not always show up on the brain and they can be on your neck and lumbar. I do receive Botox injections for Migrains but I also have severe neck pain. No one will do an MRI on neck/back for MS. I have had to episodes this year where I have had slurred speech, severe headache, inability to use my right hand, and confusion and trouble remembering. This is more than my usual day to day troubles. I have begged for a spinal tap to rule this out but I cannot find a Neurologist to order.
7 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

You might find my opinion equally frustrating but there isn't really anything you've mentioned that wouldn't be associated with the medical conditions you've already been diagnosed with......Graves Disease, Hypothyroid, Migraines, Fibromyalgia is definitely a lot to be dealing with (hugs) but i honestly don't see why you think it's got to be MS instead, sorry.  

MS would have been one of the diagnostic possibilities at the time but if your test evidence and continuous/episodic symptoms were diagnostically consistent with the alternative condition that you have been diagnosed with 'and' there was no clinical and diagnostic test evidence consistent or suggestive of MS 'and' 6 neurological consults are of the opinion it's not a neurological condition like MS......it is highly unlikely that you 'additionally' have MS!

Take a step back for a moment......stop focusing so much on needing x,y,z test to only keep looking for MS, and try to look at this from a black and white diagnostic perspective eg history of migraine - dx migraine - prescribed botox and medication (?) for migraine - my episodes are consistent with migraine = Q Do i know enough to understand my diagnosed medical condition?

Do the same thing for each of your medical conditions, include your medications and how they interact with each other, note if each condition is stable, fluctuating, unstable with what your currently doing etc and try to get a clearer perspective on everything that you are diagnosed and dealing with, speak to your diagnosing doctor about alternative treatments if it might be necessary.

What do you have left that hasn't been medically tested and or has been associated with your diagnosed conditions eg neck pain and 70% loss of hand function. Forget about looking for an MS explanation when there are numerous more common alternatives and make an appointment with your GP to specifically discuss the more likely causation of the issue and go from there....

Hoping that helps you.........JJ

btw a structural spinal issue is definitely very common and would be a potential explanation for your neck pain and hand function loss, a lot more likely than a spinal cord lesion would be. I don't understand why you haven't had the health of your spine assessed already, only thing i can think of is that you do have test evidence eg degenerative disc issues etc and not mentioned it or whilst you think you've lost 70% hand function, neurologically your hand wasn't abnormal or consistent with a neurological explanation. oh and LP's do not rule out MS at all.  

  
Avatar universal
Thank you for your comment and I understand what you are talking about I do. My problem is that all 6 Neurologist have not done any testing other 2 did an MRI. This is my frustration of going to doctors they do not test me once they see Fibro - my own PCP just told me recently he felt I was depressed all my life and did not have Fibromyalgia now!! I mean what the H---!! I agree I have a degree of depression due to my pain and this ring around the rosey game with doctors but I have true physical symptoms and I do not need a physician to dimension them. I am on maintenance meds for the Fibromyalgia but they do really seem work they keep the symptoms somewhat at bay but are not really treating my symptoms. After a couple years of being on the meds they have to change me to a new medication. I see a movement disorder physician and receive Botox inj for the mirgraines also and she is the one who is pushing me for another opinion as she feels there is more going on Neurologically with me but it is out of her field. :(
987762 tn?1331027953
COMMUNITY LEADER
"In the past, millions of fibromyalgia patients were misdiagnosed as having depression, inflammatory arthritis such as rheumatoid or lupus, chronic myofascial pain, or chronic fatigue syndrome. There are, of course, a few similarities between fibromyalgia and chronic fatigue syndrome and between fibromyalgia and arthritis. But fibromyalgia is different. It is a distinct condition that needs an accurate diagnosis and appropriate treatment."
http://www.webmd.com/fibromyalgia/guide/fibromyalgia-diagnosis-and-misdiagnosis

I would suggest you make an appointment with a rheumatologist who understands fribro and have your diagnosis of fribo confirmed, this should additionally rule out other potential medical explanations and potentially lead to better treatments options for you.

Cheers........JJ
Avatar universal
Sorry, gonna chime in here. Hope you don't mind. I also have Graves Disease. Graves Disease is a complicated Autoimmune Disease. However, it would not cause lesions in the brain or spine. I know this because I just had a visit with my Endo this week after a Neurologist found several T2 FLAIR lesions throughout my Supratentorial region. I now have to do more testing. My Endo told me that once you are diagnosed with Graves (I was diagnosed 4 years ago) it is almost inevitable that you will develop secondary autoimmune diseases. This further complicates things because many symptoms start to overlap one another. I have a friend with Graves who developed Sjogrens Syndrome two years after Graves and now Rheumatoid Arthritis. Gatogirl's symptoms are neurological in nature from what she is describing.. Neuro symptoms do not present in Graves. But because most neurologist don't understand Graves being that it's not their area. She needs to find a Neuro Specialist that understands Graves. And that is a challenge. I am also experiencing numbness and tingling in my left hand, fingers and toes.. In my case I have had 3 episodes of autoimmune eye problems in the last 7 years. Could point to Graves or MS. I have never suffered a migraine in my life.
Avatar universal
My Endo told me that once you are diagnosed with Graves (I was diagnosed 4 years ago) it is almost inevitable that you will develop secondary autoimmune diseases. This further complicates things because many symptoms start to overlap one another. I have a friend with Graves who developed Sjogrens Syndrome two years after Graves and now Rheumatoid Arthritis. Your symptoms sound neurological in nature from what you are describing.. Neuro symptoms do not present in Graves. But  most neurologist don't understand Graves being that it's not their area. You needs to find a Neuro Specialist that understands Graves. And that is a challenge. I am also experiencing numbness and tingling in my left hand, fingers and toes.. In my case I have had 3 episodes of autoimmune eye problems in the last 7 years. Could point to Graves or MS. I have never suffered  from Migraines though.. If you do find someone who is willing to do an MRI on your spine and test your spinal fluid you should be satisfied with hearing that it's not MS if those are clear.
667078 tn?1316000935
Neurologists go by your neurological exam reflexes and such it is more conclusive than a MRI. They go from there as to where to where you have damage for a MRI.If you show no damage below the head they do not do further MRIs. C-spine MRIs are often a waste of time because it is hard to hold still. A LP is a last resort test. If they are finding things on the neurological exam that point to MS and they need evidence. If you have seen six neurologists and no one is saying MS it probably is not MS. Graves disease is the biggest mimic of MS with the same symptoms.

Alex

987762 tn?1331027953
COMMUNITY LEADER
You stated "Graves Disease is a complicated Autoimmune Disease. However, it would not cause lesions in the brain or spine." but the original posted gatogirl actually stated "I have no lesions" and she has more than Graves complicating things......i'm not sure what you think i said that doesn't fit her situation, sorry.

she has 4 overlapping medical conditions (Graves Disease, Hypothyroid, Migraines, Fibromyalgia) and has seen 6 neurologists who don't have the opinion she has MS, which typically means MS wouldn't be on 'her' list of potential causes.

Cheers........JJ    
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