MS or HBP? Lesions on brain. Is there a difference?

[kiddo2860]

Hi everyone,

I have a question.  My doctor told me that I had MS according to my symptoms over the last 16 months and my MRI.  Now according to a neuromuscular neurologist that I saw this week for EMG testing (carpal tunnel, pinched nerves) for my arms, She disagrees.

My MRI shows: "9 T2 Hyperintense foci (more than nine supratentorially) No significant periventricular burden.  Some supratentorial lesions are juxta cortical in nature. No corpus callosal lesions or callosal atrophy.  There is also a focial lesion i the left middle cerebellar peduncle.

Infammatory changes are noted in all paranasal sinuses."

On a cervical MRI I had in March it showed a "shadow in the pons measuring .5mm.  That is when the referral to rule out MS by MRI was done.

I have had many of the symptoms as outlined in my last post.  I do have DDD of the lumbar, SI joints and cervical that does produce back pain and muscle/joint issues but not to the extent that I have experienced over the last year.  

She thinks it is all muslce/joint related and totally ignored my symptoms of electrical shock, burning soles of feet, pin pricks, crawly skin, blurred, runny eyesight, heaviness in the legs, pain (she said there is no pain with MS).

Anyways, I just needed to rant a bit.  Can someone tell me if the lesions (MRI) I described could also represent high blood pressure or migraines.  All my research seems to say that MS lesions are specific to certain areas of the brain. I thought that showed in the the MRI report but now not sure.  I see another neurologist on the 30th of September.  She was going to send her report to  the neuro and stated that she figured the neuro would agree with her.  I was so frustrated, angry.. I could go on and on.

Pat

[kiddo2860]

Thanks Shell.  I know that there is muscle and joint issues.  I have DDD and piriformis syndrome.  My doctor (GP) has worked closely with me over the last 16 months as we tried to figure out why so much pain, the areas, symptoms, etc.  I did 24 laser treatments with a Chiropractor, then physion 2-3 times per week, massage therapy and worked with a personal trainer.  But nothing has worked to alleviate the symptoms, it just seems to get worse.  I said in my last post that yesterday was not a good day, well last night night was hell and today is not much better.  I know that weather makes things better or worse.  It is raining here, has been since overnight so very damp.  I hurt and those electrical currents are far more frequent and to top it off I got that "MS hug" about 6:30 this morning for about 10 minutes.  Wow it feels like my chest area is under pressure almost like there is gas trapped but it keeps tightening, then ease off.  It is much worse on the right side.  Anyways, got through it and still motoring only slower today.

I read posts every couple of days and see how frustratingly long it takes some people to be diagnosed.  The neuro I see next week has a terrible rating on WebMD and my own doctor said she has had complaints of her bedside manner so we will see.  I am going to take print outs of my posts as they seem to be a good record of what I am experiencing and I have a binder with all my reports from Chiro, physio and lab tests, EMG testing, etc.  Will this be helpful or is there anything else I can do or take with me?

I really appreciate your support as well as everyone that has responded.  I will keep you posted.  Have a great day!!!

[sllowe]

p.s. The doctor did not dx you with MS based on your symptoms :)

There is a lot one must HAVE to be dx'd with MS. Though some will say it's a dx of exclusion - that is a major over simplification, and largely false. Much disease process needs to be identified before a determination is made.
We'll get your through this - don't worry.
-shell

[sllowe]

Hi Kiddo,

You could have some compounding issues going on here in addition to your MS. We are only human, i.e., the muscle/joint pain. That can be totally unrelated to your MS, and it would be great if this doctor can work to make some improvement for you.

No disrepect to your muscular doc, but the MS dx'ing doctor is going to have to make those determinations regarding MS related symptoms.

You do not have to have increasing lesions to have PPMS - there is much less inflammation going on in that phase of the disease.

Because lesions can be caused by more than one process. Please do ask your neurologist about this. If this neuro suspected your high bp caused this, you would not have received a dx.

Please don't feel bad to ask the doc. Just say you have a lot going on, and you want to make sure in your head you are understanding each problem properly. I'm sure the doctor will give you a good physical, and then be willing to tell you what is related to your MS, and what is not.

It's understandable to question this disease - many people do it. I did too. Just be sure in the end, you come to some acceptance. This will bring some peace to the madness.
(((Hugs)))
shell

[Sumanadevii]

May I ask if you have been treated with IVSM and did it help?  When someone continues to relaspe while using a DMD there is a good possibility that it is not PPMS but PRMS.  Steroids do little or nothing for someone with PPMS but works with PRMS.  While PRMS is rare about 4% of the MS population does have it.  There are other things MS specialist will take into account when dxing  it.  

While waiting for that dx a good neuro will try many things to get the MS under control.,  I will say I didn't match most MSers and did wonder if maybe I have another disease ...However, at this point too many well qualified and well respected neuro's are in agreement.

Something to consider.

[COBOB]

If there is no progression, then it can not be PPMS.  You have to have that minimum one year of progressive worsening (disease progression without remission) for a diagnosis of PPMS.  PPMS is an initial diagnosis.  You can move from RRMS to SPMS (Secondary Progressive MS.)  You could also have a rarer form of MS like PRMS (Progressive Relapsing MS.  

Bob

[MsmsinFl]

Thanks for your always-wise & helpful replies.  

A followup question:  "PPMS has no DMDs and typically has no relapses, since it has no remission."

So if one has a diagnosis of RRMS & is on DMDs, the goal is to reduce the number of relapses.  If no relapses occur while on the DMD (maybe the drug is working), how would the neuro determine whether it is still RRMS (no relapses) or PPMS?   Would it be solely based on MRI?

[COBOB]

Most (80% or so) of people with MS (PwMS)  have RRMS.  PPMS has no DMDs and typically has no relapses, since it has no remission.  Nine lesions does not make MS PPMS.  9 or more lesions with one year of continuous symptoms with no remission is one way to diagnose PPMS.  \

If you have 40 lesions and a positive VEP, but you have remissions and your relapses are more than 30 days apart, you would still meet the criteria for RRMS.  

MRI and lesion count is a tool, but it is not the "end all, be all" used in diagnosis.  

Bob

[kiddo2860]

Thank you all for responding.  My frustration  and that feeling of "I am not crazy or making up the symptoms" was at peak levels.

With regards to relapses, I don't think there has been one day in the last 16 months that I have not experienced pain or symptoms of some kind.  Some from my DDD and joint issues.  I will list the specific symptoms I have had over the last year or so with time frames as I still am new at this.

Violent Headaches at lower base of brain (especially during the night hours 4 or 5 am) for about 3 months.  At one point I went to the hospital as I thought I had a brain tumour. A CT scan did not show anything and the doctor at the ER said it was probably stress related.  (2009)


Vertigo - one week May 2010

Major dizziness - 2 episodes July 2010 - One incident was so bad.  I had just driven home (about one hour) after going to physio, massage and working out.  I felt fine.  Was about 1/2 km from home and the world started to go out of focus, felt nauseated, overheated.  I parked the car in the driveway and literally weaved my way to the side door.  Got in the house and layed down for a few hours.  I felt fuzzy until the next day.

Legs- October 2010 one month - stiffness upon standing or changing postions,pain in legs, felt like back of left knee was swollen, heaviness to walk, stairs were excruciating, stabbing, specific areas of heat radiating, other areas ice cold, itchiness.  

Arms - weakness, hurt to lift even up to should level, stiffness in fingers, pain upon any exertion to pick up or hold objects

February 2011 - 3 weeks again with my hands, wrists and arms

June - August 2011 - never experienced so much pain, heaviness etc in legs.  Every step was an effort, Could not turn my right foot inwards without pain and severe stiffness, pinpricks, electric charges lower calf area, hot soles of feet, numbess on two toes on right leg.

During this time frame I also had an increase in blurred vision, the bug stinging (right top shoulder- 3 days), right leg snapping during the night and the bladder pain.

then around the 20th of August I had a terribly painful night.  Again I thought I would have to go to the ER.  In the morning I was so drained, more so than usual.  The next 3 days were so awesome.  It seemed that there was only minimal pain, my legs felt great, lots of energy.  Then all was over again.....

Bladder - urgency, not emptying, sometimes pain (3 instances) where I thought maybe a UTI but resolved in about 24 hours

Eyes- over the last year started to get cloudy or blurred vision with my eyes running.  The running sometimes was continued for a few hours or intermittedly throughout the day.  Get black floatys.  It seems like my vision is not what it used to be.

Anxiety -  I have always been the confident, rock solid one.  Over the past 2 years I have had about 7 or 8 anxiety attacks.  Most happen at night.  I wake up, have a hard time breathing, increased HR, sweating and that feeling of forboding,something bad is going to happen or someone's in the house feeling.  Just awful!!

Fatigue- I am usually tired since my sleep is broken during the night by pain, spasms, aching so I get about 4 hours unbroken.  But there has been times over the last two years where I would get up in the morning and by 9am be back in bed and sleep til 1pm or suddenly in the early afternoon my eyes start to close and I will nod off, go lay down.

I had one incident while I was driving home from London in June.  It just happened all of a sudden I was exhausted.  My eyes became heavy and wanted to close.  I had to put the air way up, and keep shaking my head to stay awake.  It was very scary.

MS Hug - 3 times (June, July x2)  
Ticcing- right cheek, right arm, left lower eye, right upper eyelid (this month)  The cheek has been over the last week,

Today is one of those days where I hurt, my legs feel a ton, ache, my left knee rages, my right lower leg keeps getting the tingles or goosebumps, and so on.  

I know that this is alot of info, but for me it was a great way for me to timeline.  I think I will print this and take it with me to the neuro on the 30th.

So does this sound like PPMS or MS?  I thought it did.  

Also, I did not realize the McDonald criteria was for PPMS I thought it was for diagnosing MS in general.  Thanks for the info.  

[MsmsinFl]

Based on that, do you have any theories about the reason many people on our forum are diagnosed with RRMS and never moved by their neuros into PPMS, even with the matching lesion criteria?

With the PPMS criteria you describe, are relapses factored in?

[COBOB]

Per the 2010 McDonald Criteria:

MAKING A DIAGNOSIS OF PRIMARY PROGRESSIVE
MULTIPLE SCLEROSIS. In 2005, the Panel recommended
revising the McDonald Criteria for diagnosis of
primary progressive multiple sclerosis (PPMS) to require,
in addition to 1 year of disease progression, 2 of the following
3 findings: positive brain MRI (9 T2 lesions or 4
or more T2 lesions with positive VEP); positive spinal
cord MRI (2 focal T2 lesions); or positive CSF.

In the MAGNIMS work, DIS can be
demonstrated with at least 1 T2 lesion in at least 2 of 4
locations considered characteristic for MS and as specified
in the original McDonald Criteria (juxtacortical,
periventricular, infratentorial, and spinal cord), with
lesions within the symptomatic region excluded in
patients with brainstem or spinal cord syndromes....
The Panel accepted these MAGNIMS DIS Criteria, which can simplify the diagnostic process for MS while preserving specificity and
improving sensitivity.

http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/pdf

Bob

[MsmsinFl]

" I would not get hung up about the lesion count and "9 hyperintensities," as that relates to the diagnosis of PPMS. "

COBOB, can you explain/elaborate?  

[LisaJF]

Boy can I relate to your "frustrations".  You are told one thing by one doctor and go to another who discounts the areas of concern with T2 hyperintensities.  If you have done your research as well as read this forum, you know very damn well "pain" can be a part of MS.  Try MS hug or muscle spasticity or trigeminal neuralgia.  That's just a few.

I would agree with Bob on this one.  Wait and see what the second Neurologist says.  

Lisa

[COBOB]

As far as I know, HPB (if you mean High Blood Pressure,) does not cause hyperintensities on T2 sequences.  Ischemic changes cause hyperintensities.  I would not get hung up about the lesion count and "9 hyperintensities," as that relates to the diagnosis of PPMS.  

I think you should wait to see what the second neurologist has to say.

Bob