My story is very long but I'll cut to the chase and give you all a bullet-point list of diagnosed conditions I have and associated (and non-associated) symptoms which I feel all point in the direction of a MS diagnosis. I've been to to Neuro's; first one was a specialist that was useless. The long and short of it is although my Brain MRI's show "Multiple Foci" indicative of "Demylinating Disease" my Neuro won't diagnose me until my MRI's show changes. Here's the list:
* Very abnormal brain MRI's showing multiple foci in the subcoticial and periventricular regions
* Bilaterail Sensioneural Hearing Loss
* Cognitive Deficits shown on Neuropsycholgical evaluation: "Short Term Memory Loss, Deficits in Executive Functioning and Judgment"
* Abnormal VNG (confirming episodes of Vertigo)
* Opticial issues: Blepharitis, Uveitis, Dry Eye (Eye Dr. states Optic nerve is "Pale")
* Dysphagia (Swallowing Disorder)
* Clinical Depression
* Parasthesias (tingling in right hand on/ off (currently "on" in pinky finger and ring finger), Right foot
* Strange buzzing sound in head accompanies numb electric like shock feeling in right foot upon moving my head certain ways (almost always happens when exercizing)
* Orthostatic Hypotension
* Muscle twitiches (finger, hands, legs, whole body at times)
* Shingles (last summer)
* Extreme fatigue
* Sharp shooting pains in body (intermittent). Had them last night in the back of my skull
* Frequent falls in the past due to disorientation, dizziness, vertigo
* Positive Babinski's sign
* Always fail balance test in Neuro's office
Had every test imaginable for other diseases which have been ruled out. I do have Hypothyoidism (was dx'ed 15 yrs ago). Negative Lumbar Puncture. Did NOT have EVP's yet; asked Neuro to get tested. Had NeuroTrax testing done and waiting for results (memory test which I am pretty sure I failed).
Like many Limbo Landers my concern is if I have MS all this time is passing by without medical treatment and I could be getting worse. I understand they can't DX until 100% sure but sometimes I think they over look the most obvious things, like my recent depression and shingles and Uveitis. Would love to hear your comments, suggestions, insights. Does my "case" cry out "MS" to you?
PS: I'm sure I'm forgetting a host of other conditions/symptoms. Memory really is that bad; I'll re-post if I remember.
I have not digested all of your symptoms yet but something stuck me right off the bat.
You say that your neuro won't dx MS until he sees changes in your MRI. MS is a clinical diagnosis, not an "Ah Ha!" smoking MRI diagnosis. If I were you I would be looking for another neuro, specifically an MS Specialist.
Sounds like me. I'm waiting for results of MRI of brain and spine. Booked in for VEP week Fri. How old are you, and how long has this be going on for? Sounds like you have MS to me, don't give up, tell them how you feel and you want a definite answer, after all its your heath, not theirs. :)
I agree with Kyle--time for a new and better doctor.
Just a comment though, about your symptoms. All of them can be seen, to one degree or other, in other disorders, and some are really not a part of MS, history of shingles, for example.
If I were you I'd try to focus on the major MS ones for diagnostic purposes. There are ways of managing doctors, which lots of us have found helpful. Make an appt. with an MS specialist, gather all your test results and actual MRIs, and ask here before you see the next doc. We'll have some good suggestions.
I guess I should have mentioned that my Neuro tested me for everything and all has been ruled out. The ONLY test I have not had done yet is the Evoked Potentials.
I am aware that a lot of my symptoms can be seen in other conditions but since everything has been ruled out it really screams probable MS. I think I have it too. Not that I want to have it but I'd rather know so I can get the proper treatment! I really do love my Neuro; he takes a lot of time with me but I agree that I probably should seek another opinion. With an MS Specialist. I'll let you all know before I go!
I have to agree with ess that "All of them can be seen, to one degree or other, in other disorders, and some are really not a part of MS..." but also there is typically a behavioural pattern with MS sx's and usually sx's that are wide spread or moving around "Muscle twitiches....., whole body at times)" would fall into what's called 'red flags' that lead away from. MS causes sx's to be in the same places or spots in the body and if it can't cause a sx to move to different places.
I would of thought your dx conditions, Orthostatic Hypotension, Bilaterail Sensioneural Hearing Loss, Hypothyoidism, Shingles, and the clinical depression would account for and or be connected to what you've got on your sx list. So from my understanding, I wouldn't say your case is crying out that its MS. There is something going on but I don't think MS is the only possible or even at the top of your possible list.
Wow...it's been over a year and I have not been on here. I am sorry I never responded to your message!
My Neuro has ruled out everything else that could be causing my symptoms. I know some of the things I listed are not MS related but I researched on all of them and they all have a connection to MS. There's a difference but it is important to note because it adds to the entire profile of my case.
Like I said, everything was ruled out. MS is the only possible cause of everything going on with me. At this point I should have been diagnosed but unfortunately I'm still in Limbo.
My MRI's keep coming back with "No changes". It is SO frustrating. I don't want to have MS but I KNOW I do. I am completely 100% sure of that.
Without the official DX I am getting worse without DMD to help slow the progression.
A year ago I could walk around the parking lot where I work 3 times. Now I'm lucky if I can even walk around once. I get too tired and my foot goes so numb I can't feel it and can't walk right. Just an example, there's a lot more that has gotten worse and a lot more new stuff has popped up.
Very, very scared and frustrated. :(
I hope you are well...I never asked about you and what your story is with MS. Would love to hear...
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