Lesions

[murfdog19]

I've had two "attacks" over the past six months consisting of tingling in my left arm and the left side of my face, headaches and dizziness.  I have also felt very tired, sometimes for  several days straight.  I had an MRI, and the radiology report detected several bright foci in the peri and supra.  The report states that the lesions have a non specific appearance, but given my age (31 male)MS is suggested.  My neurologist seems stumped!  He even told me he doesn't think I have MS, and the lesions could have been caused by drug use in my teen years.  The lesions do not look like the classic oval shaped MS lesions, but I am convinced it is MS.  What other criteria should my neurologist need for a diagnosis?  

[AllyKat58]

My 24 year old daughter has been suffering with numbness and tingling in her legs, arms and hands. Two (2) years ago she had these symptoms. Then they went away. She had my granddaughter in 2013. During her pregnancy, my daughter was driving my car and was involved in a hit and run. Thank God she and the baby were ok. My daughters back was hurt in that accident. She's been suffering with back pain ever since. During her pregnancy, she would complain about the back of her neck. If she tilted her head back, she'd become dizzy. After the baby was born, she was noticing the numbness and tingling issue. It went away. It started again some months ago. The numbness and tingling has left the legs and arms and hand now settled in her hands. She says she can't write so well. She has trouble handling certain things with her hands. She went for blood work and EKG. They came back ok. She had an MRI yesterday (Sunday), the doctor called her today, Monday, and told her she sees lessons and has demyelinating disease. I don't know of anyone in our family, on mine or her fathers side that have had this disease. She and her boyfriend do cocaine and drink beer pretty regularly. I live with them. I hear the snorting and sneezing. I'm worried that the cocaine a/o the cut used may have given her some type of viral inflammation. After she told me what doctor told her, I suggested that she NO LONGER do cocaine. I don't know if I have a question so much as I need someone to guide me through this. I'm deeply worried about her. Her boyfriend doesn't really give a damn. They're not your ideal couple. But she chose to stay with my granddaughters father. Even though he had abandoned them both during the baby's first year on this earth. I want to be the one she turns to about this medical problem. He's not very intelligent and is wrong wrong wrong on many levels. Her father and I are divorced, she told him about doctors findings, her dad blew it off saying doctor is just looking to make money off insurance by sending you to many doctors??????? I seem to be the only one that cares. She needs several more opinions. What advice can you give to me please?

Thank you for your time and patience in this matter...

Ally

[supermum_ms]

To AllyKat58: Hi Ally and welcome to our little MS community

Your question has actually landed on the end of an old 2008 thread and might not get the responses and attention that your question deserves...

Unfortunately, it sounds like your adult daughter is dealing with more than 1 serious situation that can't be put on the shelf for later....MS is definitely one issue she needs a definitive answer on but more immediately she also needs to recognizes she can't continue using cocaine when it can and does damage the brain and nervous system. If her issues are not residual damage from her cocaine use and she does in fact turn out to have MS, treating MS typically would usually be the priority but that's not going to be easily done if she's also dealing with a drug addiction or on the way to one, dealing with her cocaine use will need to happen before she can even start taking disease modifying drugs and any other of the MS medications.  

As her mother you'd understandably be needing some help and advice on how to deal with the entire situation to get the best out come for your family but your really between a rock and a hard place, aren't you?

Your daughter is an adult who has already been making unhealthy life choices (cocaine/alcohol) despite being the mother of young children, and whilst the father of your grandbabies may be the wrong guy for her in so many ways in your eyes (which your probably right about) he is actually her bad/good choice to make.....there is nothing much you can personally do to get her to turn to you for help with her medical issues, or make wiser life choices, simply because right or wrong they're her choices to make.

Though you too have choices, you could choose to change your home life  and not accept or be exposed to illegal behaviors under the same roof as you by moving away from it or if they are living under your roof, give them the choice of stopping/dealing with their illegal behavior and what ever else is distressing you whilst under your roof or they need to find somewhere else to live.

It may seem the exact opposite of what your thinking will help your daughter but you risk enabling continual bad choices by 'unconsciously' taking over the more challenging and less fun adult responsibilities, by being the person she relies on to do that roll for her, and you may be unwittingly giving her more than you intended.....I would suggest you contact your local addiction organisation and ask for advice on how to approach the subject with your daughter.

Your daughter will need to see her neurologist again to discuss her diagnosis and treatment options, you could volunteer to be the person to go with her to her medical appointments etc and see how it's received, she may want her partner with her instead and if she does you can only hope he steps up, sorry...

Hugs and i hope that helps.....JJ

[murfdog19]

Wow, it seems like you've had quite a fun experience!  So how many times has it been suggested that you are suffering from hypochondria?  I've heard it quite a few times.  My friends and family would say "oh it's all in your head.  It's probably just stress."  Well, it turns out it's not in our heads, it's in our brains!  When you get the call that you have abnormalities in your brain, it is certainly a scare; but at least I can tell my friends and family "see, I told you so!"

[Fluffysmom]

My first neuro totally disagreed with my neuro-radiologist on my brain MRI "multiple white matter lesions consistent with MS" and instead said it was from drug and alcohol use in my teen years.  I'm 46.  I asked him if something I did over twenty years ago could be causing symptoms now, and he said he didn't see my tremors, thought they were from stress if I had any.  First visit was last visit.

Second neuro thought lesions were from small vessel ischemic disease.  She did do LP, spine MRI, bloodwork, because I had visible tremors and some slight irregularities in my neuro exam.  She wouldn't listen to the fact that I have great blood pressure, cholesterol, and never any sign of diabetes, only a handful of migraines; the main causes of small vessel ischemic disease.  Said the patchy areas on my thoracic spine were artifact.

She also hinted that perhaps what was in my brain was from what I experimented with in my youth.  I just looked at her.  I was through, after my third visit.  She agreed, said in her chart notes that I needed no further neurological workup.

I looked up the drug thing; seems like lesions show up with chronic use.  I suppose what you describe could be termed chronic, but as Quix said, why would you only now be having symptoms if that is what caused your lesions?

Got in to see an MS specialist.  She seemed to listen, did neuro exam, and told me I was basically fine, probably had small vessel ischemic disease.  I had brought all my medical records, wanted to show her my cholesterol levels for years, she wouldn't look.  She said I should follow up with my last neurologist.  I told her that neuro #2 said I needed no further neurological care, and could I be transferred to the neuro that I had asked to see in the first place, who had read my file and sent me to the specialist.

I asked her if those kind of lesions from smi disease could cause my symptoms (and I had a full Timeline of symptoms by then, faxed it ahead to her), and she hemmed and hawed around, and after more respectful questions, she decided to send me for more tests.  Only one of which would show any posible neurological connection, and I can't get in for those tests for many months.

I found another doctor that will do those tests, and will take those results to the follow-up with my Specialist, after cancelling appt. with doc she referred me too.  That doc would probably be looking for the same answers that the Specialist has preconceived.

I also see a Sports and Spine medicine doc, and he looked at my thoracic MRI and said that the patchy area was not artifact; it was visible on two views, and was definitely not normal.  He said that he of course was no MS specialist, but that area was abnormal.

I had a second brain MRI, read by the same neuro-radiologist, and he only listed ms as a possible diagnosis, leaving off the possibility of ischemic issues if patient has risk factors.

I'm sorry, this has been a very long way to say "I feel your pain!"  There are a lot of stumped neurologists out there; sometimes you just have to cut your losses and move on.

I think radiologists leave things open in case their "guess" is wrong.  It takes clinical coroboration to give a diagnosis, which a radiologist knows nothing of your bloodwork or neuro exam; he just looks at pictures in a dark room.  They get really good at recognizing things, but they can't have the last word, without more information, so they leave that to the neurologist or rheumatologist or whatever doctor.

Have you checked out our Health Pages, in the upper right hand corner of this page?  Click on that, and you'll have plenty of information about what to ask a neurologist.  You might consider finding another one, who isn't so easily stumped.

Good luck!

Kathy

[Salamander2]

Well, I'm an old lady compared to you (I'm 54),  I have had symptoms that I tried to ingore for a minium of  5 years.  My work up began in earnest last year.  So limbo land for me has not been that long. However,  I am not a patient person, I am already getting pretty annoyed with the lack of (any) diagnosis.  It doesn't have to be MS, just tell me why I feel so crummy for crying out loud!!!!!  :)

I think if there is even the slightest chance of MS your doc should be working hard to either rule it out of prove it is what you are suffering from.

Like Quix said, why are some docs so slow to pursue MS when the symptoms are so obvious?  And if they ordered an MRI because of the symptoms,  a positive MRI should confirm the diagnosis.

Don't ya think?

Sally

Sally

[murfdog19]

Yeah, but even the radiologists seem like they are taking a wild guess.  On my MRI report, the radiologist is basically saying "well I don't know for sure, but it's probably MS."  At least that is my impression!  

How long have you been in limbo land?

[Salamander2]

I can TOTALLY relate.  I don't know why a Neuro believes he can read an MRI better than a radiologist.  If the MRI said MS was suggested, then it is his job to pursue that line of testing.  I'm in the same boat.  

I don't understand why they are so slow to come to that diagnosis.  

[murfdog19]

I forgot to answer most of your questions:

   I did have 2 batches of blood work done initially.   First time around I had CBC, lipids, and a couple of other basics.  The second batch I was tested for Lyme, B12 def., syphillis, and one other I don't recall.  All tests came back normal, except for my cholesterol being a bit high.  CBC and blood sugar were normal .  

  I also have visited the neurologist twice.  Both times he did an exam...walk toe to heel, touch my finger-touch your nose, push down on my hands, and checked reflexes and sensation.  According to him, both neuro exams showed no issues.

Again, thank you for your help.

Tim

[murfdog19]

Hey guys.  I spoke the neurologist on the phone when my second attack began, and he did say something about a spinal tap.  Quixotic, here is my MRI report:

Technique: MRI scan was performed on a 1.5 tesla superconducting magnet, before and after 18cc of intravenous gadolinium contrast administration.

Findings:  The cerebellum, brainstem, pons, 4th ventricle, optic chiasm, pituitary gland, and 7th and 8th nerve complexes bilaterally have a normal appearance.

There are several bright foci in the periventricular and supraventricular white matter bilaterally.  None of these areas enhance nor is there any significant mass effect associated.  The remainder of the brain parenchyma is unremarkable.  The ventricular system has a normal configuration, and no shift of midline structures is evident.

Impression:  
   1. Multiple bilateral periventricular and supraventricular bright foci.  While these have a nonspecific appearance, given the patient's age, the most likely etiology is a demyelinating process and multiple sclerosis is suggested.
   2. No other focal abnormalities or contrast-enhancing lesions are evident.

It actually doesn't say anything about the size of these lesions.  When I went to the neuro with the films, he pointed out 3 lesions.  I am a smoker, and did have about a one year stint with cocaine use everyday.  But, that was when I college ten years ago.  

Thanks for your responses,

Tim

[Quixotic1]

Hi, and Welcome to the forum!  I have no clue why your neurologist should be stumped this early.  For one thing all MS lesions do not have the perfect size, shape and appearance.  If he expects that he is going to miss a lot of people with MS.  MS lesions can be atypical in any of their qualities - including their number, size, location (to an extent).  You have had two episodes of symptoms which are suggestive of a demyelinating event.  Were your neuro exams ever abnormal?  Did your neuro do a thorough exam, head to toe?  How are your reflexes?

How long did each of your attacks of symptoms last?

Has he sent blood work for other things that can give an appearance suggesting demyelination.  It's a whole bunch of tests.

Did he consider doing an MRI of the spine?

And has he considered doing a spinal tap as April suggested?

If the answer to all of these is "no", then you have a neurologist who is not very well educated in diagnosing (or ruling out) MS.  And you need to know that there are many mimics of MS.  You need to remain open to that fact.  One, Lyme Disease, would fit your symptoms perfectly.

Could you write out the whole MRI report?  When you say "peri" I assume you mean periventricular.  Does the "supra" mean "supratentorial"?  Do you know what the size is of these lesions?

It is true that use of the stimulant drugs can cause white matter lesions.  These would include amphetamines, crack, crystal meth, cocaine and such.  These cause brain lesions in the same way they cause strokes and heart attacks.  I am NOT asking you to tell us!  I am just telling you for information.  

What your neurologist is missing here, is one of the biggest mistakes made when doing an MRI looking for lesions....

SOAPBOX ALERT!!

If a person comes to a neurologist complaining of symptoms suggestive of demyelinating events (and your tingling and dizziness qualify) and the neuro orders an MRI - they order it to look for lesions.  When they find lesions it is absolute idiocy to immediately discount them!  The lesions have to be considered in the light of why they ordered the MRI!  Any they find must be considered suspicious.  Even if the lesions are atypical for MS, they must be kept in mind while the workup progresses.  Yes, they might be due to other factors like age or high blood pressure, but no one can say.

Possibly your lesions could be due to drug use, but then why are you only now having these symptoms?  It certainly is not old lesions from years ago.  If it was you would have had these symptoms since them.  Your doctor needs to at least consider that these lesions are suddenly causing the new episodes of symptoms.  I hope you see the point I am making.

I hate to see all lesions discounted because the person has a history of another problem like high blood pressure, smoking, migraines, or past drug use.  Can people from these groups get MS??  You be they can - and DO!!  

I think you need a second view of this whole thing - a new neurologist's opinion.  It might even be a good idea to see an MS specialist.

I would really like to see the whole MRI report and hear the answers to some of the questions.  I hope you find a good place here for some answers and some support.

Quix

[mae1]

Has he suggested a spinal tap to you????
april