Hi all, I am in the middle of dx of possible ms. My MRI came back with the following comments:

There are five small T2 hyperintense fooci scattered within the left periventricular white matter. These are variable size ranging from a couple of millimeters up to approxiamately 4.5 mm. There is also a thin rim of periventricular T2 increased signal at the posteerior aspect of the lateral ventricle on the left. There is a single 9.8 mm oval-shape T2 hyperintense focus within the posterior aspect of the right periventricular white matter. The findings certainly could be related to multiple sclerosis though other demyelinating etiologies including vascultits, chronic ischemic microangiopathy as well as infectious etiology such as Lyme's disease cannot be totally excluded. Clinical correlation is necessary.

I have dealt with a high pulse / low blood pressure for a couple of yrs and I wonder if it could be related to MS.


DX w Anklosing Spondylitis & Inflamatory bowel disease/Chrons age 41

Well.... I can't help you understand much other than you have some lesions and they can't dx you just on your MRI. You need to have your doctor do physical exams and other blood work.

I have always ran a little low on my bp and found out in 2008 that I have Postural Othorstatic Tachycardia Syndrome, which means my heart rate goes up to around 170 just by standing but gets down to low 50's upper 40's at night or resting. But I have found some sites that say it can be caused as a symptom of MS or another disease I have.

I hope you get some answers soon!

Kristie

Hi Kristie, For some reason my pulse never goes below 100. It is always high in the last few years, so I am going to pester my nuero on my next visit about it, also he sent me for the blood work....again (my Rhemy orders the same twice a year) and asked if I was O.K. with getting the spinal tap. (Guess that's next) I have to take my MRI disk this time, he was worried about my loss of sensation in my legs and my cordination issues. I have so many syptoms that I feel like a nut, you can't have a conversation with normal people about these things...thank god for computers and internet or we would all go nuts. Thank you for taking the time/energy to write, I appreciate it.

Jeanne

I've always been of a mind to allow the doctor to earn his pay and explain in detail what the reports say...
hope you get some concrete answers real soon

First, breathe, just breathe! this is a long haul process to become diagnosed for 90% of us, and its almost never as easy as walking into an MDs office and having them sit down on the first test and say "oh, you have MS" it normally takes years to be diagnosed.

Getting that diagnosis is like a rule out process. There are more than 100 diseases that can mimic MS including the brain lesions, the fatigue, the heat intolerance, and so forth. So, your MD will start with that 100. My best advice is to seek out an MS center. They deal with the subtle nuances of this disease all the time. They are the pros at this. Even if you only see them once for your diagnosis or rule out and then see your local guy, its so worth it.

So, lets start with the 100. There are easy ones to look at like Vitamin D def, or Vit B def. They can use a regular blood test to rule that stuff out. Migraine syndrome (some can be silent) is another that can be kept in the running for a long time. Lupus, Lyme, sjoghrens, and several other big name goodies can be ruled out with another round of blood tests. Once your MD has run the list of 100 down to a list of 10 or so, it then becomes a guessing game, or a game of what fits best in YOUR catagory of symptoms. MS is like a finger print. no two of us have exactly the same sx at the same rate and style.

Your MD will then look at Devics and other such things along with MS. Guillan Barre and so forth. There is NO single blood test or even MRI test that can say "oh yeah, she has MS" they look at the pattern of lesions around the ventricles of where the blood flow enters the brain. If you have lesions in other areas it doesnt mean you do or dont fit in the crowd. So, you need some patience, and some tenacity.

Please dont let all the language and stuff overwhelm you. Let the big boys sort that out. That is why they went to 100 years of college and practiced on folks for years before they chose a specialty. If you want to look up words one by one, you may or may not understand them. The best advice is to sit with YOUR MD and ask. What does this mean for ME? For some folks this little blip means nothing. For others it means drastic changes are coming. So...have faith. have patience. Take some time to get your paper work in order, because once anyone actually writes on paper that YOU have MS...you WONT be able to get life, health, disability or long term care insurance. If you can get some of that stuff now...DO IT!

So, pull up a chair and talk with us. Breathe, and remember that its a long process to get a cemented diagnosis, and even then, its a marathon, not a sprint. STep by step.

Dejibo, thankyou for posting. I guess I feel like I have been on the diagnosis trail forever...(I'm sure many feel the same) I was actually relieved to some degree to have someone...anyone tell me it wasn't all in my head..although at this point it appears that some of it is in my head..lol

This whole thing started out many years ago with diarehea..so the 1st dx was chrons...second opinion thought I had spastic bowels...had aches and pains that came with it. (none of their meds every helped except for Flagyl when I really got sick) I also always put up with little things that I thought were just my normal, like seeing stars when stress was too high, odd twitches here and there lasting for a couple of days to weeks. Foot pain became a constant, then it bothered my back. I had no insurance for a few years and just muddled through..I finally got insurance in 2009 and was at my wits end with the pain, so I restarted my effort to find relief.

At first my primary was supportive (live in a small town, not much to choose from) then after he tried a few things he ended up asking me if I needed mental help....Like a mother of two, working a full time job (driving 3 hrs roundtrip to work and back) and running her own business is going to take the time to wait a couple of hrs to see him and then complain about a something of no importance...duh Doc's can be jerks...(I know, I've worked for a few jerks in my years of work in the optical industry).

I switched doc's within the practice and had somewhat better success, he sent me to see a podiatrist, the podiatrist sent me for MRI to check for back issues (had a bulging disk causing some stenosis) from there went to Nuero to discuss the disk, he said it's not bad enough to have sx. and sent me home. The poditrist decided I have might have tarsel tunnel, sent me for nerve conduction testing (mind you these visits are an hour and fifteen the opposite directions from work) the emg resulted in me finding out I had some periphrial nueropathy in left foot. So off to surgery on left foot to complete a tarsel tunnel release. I felt ok during the time I laid on the couch to recover. Then once back at work, the pain started anew and in earnest.

I went back to my primary, he was baffled, ran every blood test he could think of and came up empty handed. I asked to be sent to a Rhuemy since the pain was in my hands as well by now and thus my lower back counldn't have caused that as well. By this time I was already taking Neurontin and Tramadol and amiltripline to deal with pain.

Waited for a long time to get into Rhuemy...finally she saw me, took an hour to get a good picture of who I am and what my family history was. Then ran genetic testing to find I am HBL 027 positive (gene thought to predispose people to certian kinds of arteritis that are not found with the RA type of testing.), she dx'd me with Psoratic Arteritis. So I began to take what she prescribed, (she felt that I have had the pain for so long that I was beyond the first line of treatment they use-had taken all over the counter pain stuff to the degree that my stomach was p.o.'d with me) so on to the second line of treatment called Disease modifying drugs. Sulfazalazine was first, no help, then Humira...6 mos worth...no help actually made things worse. She then decided that I have may have Anklosing Spondylitis because by this time I couldn't bend enough to wipe myself or to pick up something on the floor. AS is a form of Psoratic Arteritis. So she tried to get me into trails for AS. I didn't
qualify as the requirements were very strict (only 250 across the world were wanted). So back to what was left in her arsenal and that is Enbrel. I filled out the paperwork and waited quite a while to hear from them.

In the meantime, I researched the side effects of Enbrel and read up on it on the Kickas.org forum I belong to. Upon reading others experiences, it dawned on me that I had many other stupid little symptoms that I ignored and put up with, in fact I put up with some for years. I started to realize that my issues where not all things from arteritis. In fact, somethings I have had for years and some things were worse since I had taken Humira. On the package of biologics, it says not to take if you have ever had MS. Meant nothing to me at the time. Until i read about someone in my boat that had certain things (sx) become unbearable since taking biologics. I finally sat down and wrote a list of the things that I am struggling with. The list was rather long...trouble urinating and incontinece, heat intolerance, pain in upper areas such as hands arms and neck, etc. , shooting pains for many years, numbness of feet/hands, and many more issues. I took my list and my sore stiff misreable and almost handicapped by this point self back to primary and complained. He didn't seem to think much was wrong, gave me anxiety meds, gave me grief over my hydrocodone need (barely takes the edge off
), told him I will be in a wheelchair before they figure this out...(no offense to others here, this was before I every came to this forum) but he did order mri's just in case...and that's when the lesions and inflamation in brain came up. Apparently there are a few of us out there that have nuero issues that should never be on biologics (nuero doc said no more for me with my brian lesions) . So I am a hybird of sorts, stuck waiting to see where the next turn is in the road.

I hope my experiences will help others like me, since I may be one of <.01% of people that have problems with Humira or Embrel, etc. So I have enjoyed the company of you nice people while I wait to find answers. I do realize that maybe it could be something other than ms, but I personally feel that I am not too far off base. Thankyou for listening...and having a bunch of really nice people here. It helps to pass the time to read and realize that no matter how bad you "think" you have it, others have it much harder. I have always been happier worrying about others...still am. I have the god awful "mom" instict, i have worn myself out mothering all in my family, brother, mom, etc. and the inlaw side as well. They still call on me to support them and give them strength. Only, when I need the favor returned they are not sure what to do...sometimes you only need listen..you don't have to have all the answers, just listen. I get the feeling many of you sage people know what I mean. Jeanne

I know what you mean, I was telling my docs and some family that we wouldn't know what was wrong with me until I was dead. I was going to have to live with never knowing what was wrong and when I died the only way to figure this out would be to do an autopsy. I know that's morbid but that's the way it felt!

It is so frustrating and tiring to wait for answers. I am also an odd combination of diseases that puzzled doctors for a long time. My primary physician used to say I was a puzzle, wrapped in a mystery, surrounded by a conundrum. He was such a great doctor, he's retired now, mostly

I finally got answers just to have my other specialists question them.

Just hang in there, you will get your answers.

Kristie

Hi Jeanne. I am not a doctor and I haven't stayed at a Holiday Inn Express in over a month. But I can give you a very brief translation of what they are saying. I am not a professional...so listen to the professionals you are paying for their opinions. My opinion is probably worth exactly what you are paying for it. With that out of the way...

A "T2 hyperintense foci" is a really fancy doctor word for a "bright spot". What they are saying is that there are 5 bright spots on one of the scans. You commonly hear them referred to as "lesions" here, but without secondary correlation is is impossible to determine exactly what they are. Generally, bright spots reflect areas where the myelin has been damaged. Myelin is the protective sheath that surrounds bundles of nerves. Areas where it has been damaged (by any cause) will show up as bright spots. Neurologists use clues like the size, shape, location, and whether the bright spot is "enhanced" when contrast is added" to determine what might be causing them

The text you quoted also describes the size and location of the spots(periventricular white matter is a very common location for MS lesions), and also mentions a "rim" of brightness along the edge of the ventricle, which is also common in MS and some other diseases.

This kind of language is very common in an MRI looking for MS. Typically, the doctor will send you for the MRI with a request to the radiologist to look for evidence of MS. The radiologist can see spots, which are in locations, shapes, and sizes that could be MS, but the radiologist cannot tell what is causing the spots, so they tell the doctor to clinically correlate the spots with other evidence to determine what is causing them. That other evidence can be spinal tap results, blood test results, clinical review of your symptoms, etc.

One thing to look at before you go back to the doctor is the McDonald Diagnostic Criteria (wikipedia has a good discussion of it). It is what the doctor will use to determine if he can diagnose you with MS. In my case, when the doctor told me I didn't have enough lesions in the right places to give me a MS dx, I thought she was saying she didn't think the lesions looked like MS. Instead, two years later, when more lesions showed up, I got a dx because I had satisfied the requirement for disease progression over time.

Hope that helps...Good luck!

Kristi, thankyou for your post. I came here to try and find one friend and some answers. What I found was a circle of wonderful people like you.

Keep in touch and let me know how you are doing if you like.

Sincerely, Jeanne

TXBatman, thank you for posting! You made me laugh as well, which is always helpful!

I have a few more questions for anyone out there:

Do lesions "heal" or go away?

Is there a way to tell how old a lesion is?

also,


Does anyone have trouble regulating their body temputure? I always have a low fever that I have to take tylenol and advil at the same time to compensate. My stomach doesn't like advil, so I will pay in the long run.

For me knowledge is power as I don't like the unknown and tend to confront things head on. (once I stop ignoring them, lol)