Update and Need Your advice on MS

[massie7899]

I have posted here few months ago and all of you have been wonderful with your response. Thanks again.  My symptoms includes extreme fatigue which causes worsening/drooping left upper eye lid, occasional fasciculations, urinary urgency ,right sided weakness, worsening constipation, brain "fog", balance problems, gait problems resulting in cane use (ataxia) . Foot droop with walking and neuropathy. I've been out of work for 7 months and going on long term disability

Neuro exams Abnormal :showing muscle weakness, in-coordination, balance problems and hyperreflexes

Diagnostics:1.  abnormal evoke potential done 5/14) a 2. Negative Lumbar test therefore my neuro excluded MS in May due to this. My MRI at that time without contrast showed "multiple scattered foci with T2 FLAIR hyper-intensity in the periventricular and subcortical white matter"
3.  Anorectal manometry done Aug 2014 ( internal and external sphincter with in-coordination causing  severe constipation, megarectum due to possible neuro/spinal or sensory problems and pelvic floor dyssernergia).  I take Linszess and dulcolax  laxative twice a day with some success. My GI is sending me for  biofeedback therapy.
4. Neuro-pyschological testing in June shows : Multi-domain  Mild Cognitive Impairment due to possible auto-immnue disease or vascular 5. MRI (without contrast) yesterday showed:" No significant change in mild burden of nonspecific cerebral white matter lesion".  It also stated "white matter lesion quite small measuring a few millimeters and scattered and predominately subcortical distribution" however the radiologist stated " None of the lesion are strongly suggestive for  Multiple sclerosis".

I don't think I will ever get answers with this ailment. Has any of you experience anything similar. Neuro told me that MS can take time to diagnose and some may go undiagnosed. Your feedback will be greatly appreciated.

[massie7899]

Sorry to hear that you don't have answers either to your medical dilemma. I'm amazed that your MRI has not led to a diagnosis either.I plan to keep you posted. Since we don't have a definitive diagnosis, we end up with a lot of medical diagnoses/conditions (i.e neuropathy, myopathy, ptosis,  RT sided hemiparesis, etc), which are direct symptoms of our actual undiagnosed illness (ie. MS, Lupus and etc.) Please keep me posted too :)

[aspen2]

We share a number of similar symptoms, and I am also in limbo, so I wanted to commiserate with you :).  I also want to keep an eye on this thread.

I can add an initial attack of trigeminal neuralgia, plus until this last episode my weakness was only one sided (and my right hand seems to have permanent weakness now).  I had double vision from May to August this year as well.

I have had brief periods of ptosis with colour change in one eye .. but no ON.  I also get fasciculations, but they have been constant since August and just change in intensity.  And the cognitive stuff ... yikes.  Could bore everyone to pieces here.

The most recent episode was the worse yet -- four days unable to walk (weakness and coordination) and iffy for 10 more days, bladder and bowel issues (unresolved), plus some other stuff.  First time anything has been bilateral. I've even wondered if this is now spinal stuff -- but so far nothing showing up on mris.

I have five sets of mris.  First set suggested demylinating disease such as ms with other differentials.  Second set impression section said I met McDonald Criteria for  ms (2010) with periventricular, juxtacortical lesions, internal capsule lesion and something else I forget.  Third said NO lesions in perventricular or juxtacortical area dropped ms off the map completely, implying vascular only.  Most recent said, ms is back as a possibility, and I now have subcortical, periventricular and two near the EXTERNAL capsule.

{{Head spins.}}  But still stable.  Except for my symptoms and neuro exam.

BTW I overwhelmed my first pcp into firing me as a patient :).

So ... sorry you're dealing with this. I understand everything you are going through.

[massie7899]

Kyle,
Thank you for your responses. You are right. A lot of my diagnoses can be overwhelming for anyone, including myself. I rarely see my primary care physician and most of these diagnoses are managed by myself and other specialist including my . 1neuro-endocrinologist ( he has partnered with  MS specialist to help diagnosis me) 2.GI and 3.GYN. I'm also a nurse and going on disability due to this( thank your sister for her hard work for me) .

My docs adores me and I let them do their work. They tell me that I'm overwhelming on paper but the opposite in person. I'm not the typical nurse that interferes with my care.I am not a fan of medications and I don't see them or call my docs unless they ask me to come in. Its unfortunate that I'm going through all this. Anyone that knows me well, knows that something is wrong especially when I walk. My docs bothers me more that I bother them.  These conditions were assessed and diagnosed by my docs over the course of years .

I'm learning a lot from you and the rest of the team. Your guys are amazing here and I value your opinion.  I leave my work (nursing) outside the door and let my docs take full control of my care. Maybe this is why I'm still having all these problems.

I did go to Johns Hopkins (JH) Ataxia  Center in July because my MS doc and my Neuro endocrinologist felt that my condition was genetic and diagnosed me with Ataxia, when my LP came back negative. The ataxia doc at JH stated that ataxia was my secondary diagnosis and its due to a unknown primary diagnosis. She felt it was some type of  auto-immune disease and neuropathy. The onset of worsening of these symptoms was Oct 2013 to present  with periods of incomplete/partial remission and exacerbation.

The JH doc said that I had a lot of diagnoses too. She said some she agreed with and others she didn't agree with but did not elaborate. Her focus was on ataxia only and sympathized with me for what I've been through. I thank you again for your time, guidance and support. Your are amazing and I plan to keep in touch. I hope and pray to get final  diagnosis to this particular ailment.Have a great week-end and many wonderful blessings and healing to you :)

[massie7899]

Wow!!!!!!!!!!!!! Impressive. You are amazing Supermum_ms. your response was excellent. Yes, I do have a lot of conditions that, unfortunately  I have been diagnosed with.  Its overwhelming and Kyle is right that some docs can be overwhelmed with that.   You are right about the MRI report. What I stated is exactly what  was written. I wanted to do it with contrast  and take  prophylaxis prep due to allergic reaction to contrast but docs  won't let me do it for now. I'm very impressed with your assessment  and I thank you from the bottom of my heart for your time and response. I will keep you posted.

[kwarendorf]

Hi Massie

I agree with JJ. There seems to be too much going on for any single thing to cause, including MS. As most of us with MS can tell you, having MS does not make us immune to other health problems.

Although we don't like to acknowledge it, Dr.'s are human. There is a risk that if you present a single doctor with the entire list of your issues, they will see you as a patient of Dr. Google. This is not a good thing as you will loses there attention.

You would seem to have enough clinical and MRI evidence to suport further looking into MS. WHen you see your MS doc try and focus on the top 3-4 symptoms in terms of impact on your quality of life. DOn't mention possible diagnoses. Let him/her do that.

SOrting all of this out will no doubt take a long time. Be patient. You are at a good place.  Hopkins is a tremendous resource. (Full disclosure: my sister is an OR nurse there :-)).

Kyle

[massie7899]

You are quite right. I agree with the LP and MS diagnosis that you just stated. Some neuros are so stuck on it. My neurologist is an MS specialist who wants more evidence of MSI. I thought MS lesions can occur in Subcortical white matter . With all my symptoms,I'm not sure what else it could be if not MS.

[massie7899]

thank you so much for your quick response. My neuro is actually an MS specialist. Your story is quite interesting. You want through a lot too. My best friend just advised me to consider a consult with an MS specialist at Duke

[essdipity]

Hi there. Just want to chime in with this comment:

If you are saying that your neuro ruled out MS because your lumbar puncture did not indicate MS, then you have the wrong neuro. A positive LP absolutely is not required for diagnosis, and in fact, many knowledgeable neuros are skipping the test these days, as it's invasive and not diagnostic. A positive LP simply adds evidence towards a diagnosis; negative (which about 15% of MSers get), does not mean anything one way or the other.

With your MRI results and other factors you mention, I urge you to find another doctor who truly knows about MS. Neurology is a big specialty with many diseases and disorders included, and often someone who truly specializes in MS is needed, not merely someone who says he or she is an MS specialist. You can find out more about MS specialty info at mscare.org, or ask here.

ess

[HVAC]

You sound a lot like me but I have permanent double vision. I had no changes in symptoms over two years they were constant so no one wanted to diagnose MS. Several Neurologists said it has to be MS or you will be diagnosed with MS. I had something called Dawson's fingers on 4 MRIs which is classic MS. I did not have a LP for two years luckily I had 12-obands so I was diagnosed.

I do not know if you have looked at the McDonald Criteria yet that is how they diagnose MS. It leaves a lot to the Neurologist. I don't know if you know this Neurologists Specialize and many know just the basics of MS plus if you have a sub catagory such as Primary Progressive MS a regular Neurologist might miss it. I went to one who was a head ache specialist that was a wasted six months. With each Neurologist I had to start over with them following my progression over time.

My MRIs stay the same and my Neurological exams stay the same.I had my first attack for which I was hospitalized in 1965. I was sent to the Mayo Clinic. They knew I had a problem with my Brain Stem. They did not know babies could get MS. I went to Neurologists my whole growing up, even to Duke where I am now. In 2007 my GP found the MS she sent me to a Neurologist. Two years and several Neurologists later I was diagnosed with MS. A year later I was diagnosed with Primary Progressive MS.

Each case is individual. There is inflammation and as inflammation comes and goes so do symptoms. Then there is nerve damage with that symptoms are permanent. Inflammation and symptoms can last for years.

They took part of my rectum out because of Cancer. They did biofeedback. It helped. the PT was really nice and did not make me feel weird. It has helped.

Alex