Finally got an Appointment for the MS Clinic

[Sandy2003W]

It's not till January 29, 2009, but at least its make.  I gather I spend the whole day there seeing  4 different doctors.

I now have all my MRI brain scan, not that it sounds to good.  I also am going for another angiogram for my arteries in my head, but said he'd check out my 9 year old by-passes to see how their holding up.  This is supposed to take place in the next week or two.  Sure be glad to get it over with.  The also want to do a Lumbar Puncture, that I am very worried about.

My biggest complain is my legs are achy and painfull I can barily stand up sometimes.  Mornings are almost impossible until my meds kick in and then I can atleast hobble are our place.  I got up this morning and I have what I think is a blood blister on the bottom of heal.  It is painfull to stand on, but I have no idea why or how is formed. In fact I'm not even sure it's blood blister.  

My feet have gotten a bit better, I'm not getting the neurologic pain in my arches now.  It seems to come and go of it's own accord.  My back is very painfull right now and I'm hoping that is not what is cause the problems with my legs.  I guess all the testing and the MS Clinic with figure this stuff out.  

Anyone with any suggestions or help I would deeply appreciate.

Cheers Sandy W

[Sandy2003W]

Hi Quix,

Thanks for replying and giveing me food for thought! :)

"(I wonder what the stregth of the machine was)"  I have no idea, but the day before I went the machine broke down.  It is a very old hospital and unfortunately so is most of the equipment..   I'm hoping when I go to the MS Clinic they have a better MRI machine.

I do have Hashimoto thyroid Diease & FM

Well my father died at 49 of major heart attack, mother is still at alive at 85 & has thyroid diease.

I had sever migraines with auraj & vomiting for over 15 years before I managed to get rid of them for good, but that is another story....   I do have cognative problems, memory problems and some type of weird "episodes" for a better term.  My worst problems right now are my legs.  I am now getting numbness in my right upper leg and it is painfull to just tough it.  I told my hubby it was time to take my out behine the barn and shoot me... ;)  He said sure, as  soon as we get a barn and a rifle, no problem...  

As for spinal stenoses I DO have it in my lumbar L5/S1, but not in the cervical spine.  
But I don't think the leg pain is from my back.  I also had a muscle biopsy and showed no problems with the muscle, but did suggested denervation process was taking place.

South Washington is close and thanks for input on the MRI, it helps going over it with someone other than the doctor.
I'll let everyone know what happens. Cheer Sandy W

[Sandy2003W]

First off the blood blister is very sore to walk on.  Took a shower this afternoon and realized the pressure was off it.  I looked at is an pealed the thick piece of skin that was still attached.  It look like a round whole in the skin, below is just raw and red, but not bleeding.  I put some antibiotic cream on it and a bandade.  I'll see how it looks tomorrow.  Weird though..

Thanks Shell, Richard, Lulu & Kathy for your concern, suggestions, and Info.

Cheers Sandy W

[Lulu54]

Quix and Sandy,
Thanks so much for this information - Q your reply once again taught me more about the technical side to this.  I appreciate your time and talent Dr. Q!

Sandy, I trust this will make some sense to you if you read it over and over - it is so different than our heart stuff you know?  

Be well,
Lulu/Laura

[Quixotic1]

Hi!  I'm not sure we've talked.  I misssed you when you were here in September.  I've been readiong some of your posts and other writings and you have my full sympathy for the horrid things you have been going through without answers.  I hope you find great support and some information here in our little home.  I'm glad that you are finally making some progress in getting referrals, but it seems they are looking everywhere for some answers.

I'll try to put the results of your MRI into real people language.  Your MRI is what got everybody moving.  It shows the kind of lesions that we talk about in MS, that is bright spots (hyperintensities) on the T2 views.  The MRI is done in T1, T2, and FLAIR images (plus often a whole bunch of others, but those three are the major ones)  You can read the first Health Page on How MRIs show MS Lesions for a little blurbette on this.

Unfortunately the lesions don't sing out exactly what has caused them.  they are nonspecific in their location, size, shape and appearance.  So the radiologist discussed the different possibilities.  The first thing we notice is that the lesions are most severe in the subcortical area.  This is the area of white matter just under the border between the gray matter and the white matter.  The white matter is white because of the presence of myelin which is a white, fatty substance whcih insulates the long communicating nerve fibers.

The MRI was not of great quality (I wonder what the stregth of the machine was) but the lesions might be due to a vasculitis.  This is an inflammation (typically autimmune) of the blood vessels such as can be seen in autoimmune diseases such as Lupus.  This is why they are referring you to rheumatology.

Very often the radiologist will say that this location is most suggestive of small (blood) vessel ischemic (starved ofr blood and oxygen) disease such as untreated high blood pressure, migraines, stimulant drug abuse.  But, this radiologist goes on to give the helpful information (which I didn't know) that ischemic disease isn't usally seen so much in the subcortical temporal lobes and you have quite a bit of lesions there.  And He/she goes on to say that there is another location that you usually do see ischemic lesions there, but this is not seen in your MRI.

You also have lesions in the periventricular area, a location that is pretty classic for MS (and some other diseases.)  So putting the first part with this part he says that a demyelinating disease could look like this.  MS is by far the most common demyelinating disorder, but not the only one.  This adds to the need to have you seen by neurology and the MS Clinic.

He then mentions that CADASIL can look like this, but you are a little old for this at 58.   CADASIL stand for Cerebral Autosomal Dominant Subcortical Infarcts and Leukoencephalopathy.  (you can see why it is always abreviated).  This is an inherited disease of strokes and brain damage.  Autosomal dominant means that half of the offspring will have the trait - like brown eyes.  Usually there is a family history of early strokes and cerebrovascular problems, but this can occasionally be caused by a new genetic mutation.  I think they do a skin biopsy to look for the mtuation.  I believe it usually makes it's appearance in young adults and in people under 50 years old (average by mid-30's), but that is not a hard and fast "rule."   This is usually a severe disease.  Sufferers also usually have severe migraines, develop cognitive and often psychiatric problems with dementia, sometimes seizures, vision problems, and depression.  This is likely why the cardiology referral in addition to your history of cardiac problems.  

This is the best I can do for the white matter lesions part.  I am not at all adept in interpreting the MRAs.

Your history of spinal problems does make all of this harder, but I read on the Back and Neck forum that you do not have spinal stenosis, so they have to look elsewhere for the problems.

Above all do not let anyone tell you you are "too old" for MS.  Ain't no such thing!

I'm not sure what I wrote is helpful.  It is basically saying exactly what the radiologist said, and that was a pretty thorough report.

You are my neighbor to the north!  I live in (southern) Washington.  Welocme again!

Quix

[Lulu54]

Sandy,
I read your post from yesterday and couldn't begin to help you interpret the new MRI information.  I am pretty clueless with most the medical side of things here since I am so new at this.  I hope the aching legs and headache give you a break today and let you do something you enjoy.  I am so sorry you are suffering like this.

Can anyone out there help with this one?

My heartfelt best to you,
Lulu/Laura

[Sandy2003W]

This is to everyone that replied....  I'm having a lot of body ache and my hands particularly bad right now...

The thing on my foot fits a blood blister under the skin, the skin has not been broken.  I think it because the circulation in my lower body is very bad.  I'll be seeing the doctor withing the next week but if it gets worse I go to a walk in clinic if necessary.

My head MRI says: The ventricles are normal in size and contour.  There is prominent subcortical white matter hyperintensity in both temporal lobes, both parietal lobes and both frontal lobes.  There are a few lesions in the central white matter.  No lesions are identified in the brainstem or cerebellum.  No lesions are identified in the corpus calosum.

My MR angiogram demonstrates normal appearing great vessels.  The vertebral arteries are mildly left-sided dominant.  The carotid bifurcations appear unremarkable.

Intracranially, the left middle cerebral artery is not well visualized on any of the sequences and my be occluded.  There is reconstitution of filling of the more distal aspect of the middle cerebral territory on the left. Unfortunately, 3D time-of-flight images through the brain were not performede to confirm these findings.

The MRI cervical spine demonstrates mild changes of spondylosis from C3 to C6 inclusive with mild flattening of the anterior thecal sac by broad-based disc protrusions but no cord compression.  There is mild neural foraminal narrowing buy no severe neural foraminal stenosis.

IMPRESSIONS:
Marked subcortical white matter hyperintensity with less severe perinventricular white matter hyperintensity as described above.  Unfortunately, the imaging features are non-specific but the possibility of vasculitis is raised.  Severe small vessel ischemic diease is a consideration, but normally doesn't involve the temporal lobes as prominently and tends to involve the subinsular white matter more prominently.  A demyelination process could have this appearance.  CADASIIL could have this appearance, but the patient is slightly older than is commonly seen for this entity.  Unfortunately, the MRA is not of excellent quality.  There is suspect abnormality of the left middle cerebral artery.  A CT angiogram of the arch of circle of Willis is suggested for further evaluation.
---------------
They can not do a CT scan with contrast as I am highly allergic to the iodine dye.

To get to this point with a lot of the tests done and appointmenst for the specialists being made, has taken me 4 years and 3 different neurologist!   In the four years I have really gone down hill, it's very fustrating, but atleast I am finally getting somewhere.

Any comments for suggestions on what the MRI's tell me would be most welcomed.

I also got my CT of my lumbar spine, from L4, L5 & S1 show marked canal stenosis.  A whole lot more, but basically my lower spine in hooped :)  I already new that, I orginally had a laminectyomy back in 1980, which really did not fix the problem.

Their not sure weather my leg & feet problems are from my lower spine or from possibly MS.  

Sorry this was so long, I wish I understood the results better.  Got to go lay down now, my legs ache so bad and to top it off I have massive headache....
Cheers Sandy W

[Fluffysmom]

I was racking my brain about your blood blister, and I remembered when I was young, my older sister had something like that on the bottom of her foot.  My dad sterilized his pocket knife (I know, shudder!), probed at it, and discovered that she had stepped on the broken off tip of a needle (big sewing family) some time before.  It had gotten infected, and abscessed.

So I agree with Lulu, have your doctor check it out and make sure it's nothing of major concern.  

Congratulations on your appointment at the MS Clinic; wow, a whole day appointment with several doctors; that's pretty awesome.  You have plenty of time to get all your thoughts and paperwork in order.

Take care,

Kathy

[Lulu54]

It is good news to hear you have an appt at the clinic.  It's time you get a proper diagnosis.

Now about that blister - since you are unsure what it is, don't you think you should get it checked out by a doctor ?  I mention it only because there are so many things that can go wrong with our feet and once a problem starts or infecton sets in, it can be next to impossible to resolve.  Our legs already don't work so good, and we need to keep our feet as healthy as possible. You have been through so much already, please have your foot checked if this blister is still there in a day or so.

My heartfelt best to you,
Lulu

[OperaMBA]

I am so glad that you got an MSS appointment!   Yay!

There is absolutely no substitute for good, competent medical care.

I pray that your symptoms become more manageable!

Richard
OperaMBA

[sllowe]

Hi Sandy,

This is good news about the appt.  I am wondering what that blister means though.  I hope someone comes along with more info.  It's strange.   Anyone you can call on it?

I'm sorry to hear about all your pain.  I know when the parathesias was at it's worse in my back and spine, my legs were affected big time.  I could walk, but had a hard time sitting or standing for any amount of time.  It affected everything, including going to the bathroom.  The did not see anything to cause it via MRI, so said it was due to the damage in my spinal cord.

Cheers back to you, and wishing you a break with some of this pain, and that you feel some peace knowing it will be the end of Jan before we know it.  Especially w/the holidays.

Hoping some will have some thoughts were particulars are concerned w/the neuropathic pain.

see you soon,
Shell