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.
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.
" 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?
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
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?
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.