Unkown Lesion can't be biopsied

[hollyrachel]

I really need help, I have been in and out of hospitals since April 18th, started with numbness spreading from little finger in left hand, up the arm, then across my chest, then in my left foot and leg, later spread to right foot. MRI shows 7mm lesion in my cervical ( c 4 c5 )spinal cord, because of its location, I was told by top neuro surgeons they could not do a biopsy. Brain MRI is clear, 3 lumbar punctures with nothing abnormal including 3 cytology reports. I am a breast cancer survivor, they do not think its cancer...but I have no diagnosis since they can't do a biopsy, its not lyme, ms, sarcoidosis or devics....I can not find a doctor who can diagnose me, I have been on steroids via a pic line and oral, this did help with some of the numbness. I experience electrical "zings" when I move my head, and am currently on neuronton and blood thinners (developed bloodclots in leg and now lung) Any ideas of what this could be? I am at my wits end, and since it can't be safely biopsied, I feel the neuroglogists are at their's too.

[MissLauraI]

HollyRachel- I wish I had some kind of answer for you as I know how hard it is to be in the dark about your health and you must be scared as well as frustrated. I just wanted to respond to your post and tell you how I wish you the best and hope someone can come along and give you the help you need very soon!!

((Hugs to you))

Laural

[sllowe]

Hi there,

First off, congratulations on surviving breast cancer! I'm so sorry you've got something else to contend with. Welcome to the forum!

I've never heard of the potential biopsy of a demyelinating lesion. Did they say this is what it was? And, was it w/in the spinal cord at the C4-5 level?

Who found the lesion? The neurosurgeon? Or, a neurologist? One lesion can wreak havoc on the body, but on the other hand it can also leave you completely symptomless.

Can you take us back a bit and provide a bit of a timeframe to what starting to occur and when? If you've had an independent review via a 2nd opinion, etc. Would like to look at where you are 1st in order to give you thougths on next steps.  

Thank you so much for joining us, and trusting us with your situation.
-Shell

[COBOB]

I;m wondering how they can say it is not MS?  By definition, if it is not anything else, it is MS(or at least CIS.)  There is no way to rule out MS.   It is a diagnosis of exclusion.  

I'd think you should see a Neurologist who is an MS specialist to get their read on this.

Bob

[hollyrachel]

Hi, it started when I had 3 root canals in March and early April, the doc thought I may have a facial nerve issue, told me to call a neurologist, that Fri, I had a fever, and felt "off" that sunday my little finger went numb (april 18th) by Sun, by arm was numb, Monday I went to the ER thinking I may be having a heart attack. They found the lesion on my MRI in the cervical area, clean brain, T area and soratic (spelling) MRI's. I had been working with neuro surgeons and neurologists and onclogists, after 2 clean lumbar punctures I was transported to the Univ of PA in Phila, saw the neurosurgeon chief and team members and they stated they did not believe it was cancer, more of an inflamation compressing the nerves, however they ruled out transverse myletis with the lumbar punctures and blood work, I just had blood work sent to the mayo clinic and they are doing eye tests tomorrow, the neurologist at HUP stated it was not MS because of the test the mayo clinic reviewed (blood work), I don't feel they have any idea what to do now since it cant be biopsied, and my life is upside down at this point...when I move my head I get electrical shocks throughout my body, and the burning and numbness subsides if I lay in bed and don't get up, this is a main factor in the blood clots that have formed. My oncologist had to take me off of tamoxifen, because of the clots, and I have no back up plan to fight cancer now. I am 46, and normally a very active mom. Thanks for your comments, I have never posted on a board before (except FB) and I really appreciate reading all the comments on this board, som many of you have such similar symptoms and issues. Cancer was a breeze compared to this.

[sllowe]

Hi again,

You are very welcome. I hope we can be a source of support and info for you. Something could have steered the docs away from MS. Your deserving of knowing where the docs are in their investigation currently.

It may take a totally independent neuro to review you and your body to find the culprit.  MS is not easily dx'd. And, it's a clinical dx. None of us are doctors here (except for our retired Doc Quixotic who is offline currently).

But, to add some clarity to what's been said. It's not a matter of us reading a MS criteria chart and determining MS or not. Neuro's (whether MS specialists or not) don't conclude  MS by saying, "Well, it's not 1 - 10 so it IS MS." I'm sure they wish it were that easy too.

It does appear to me you have some things going for you and that is this team you mention. Seems they are really working to find out whats going on. Inflammation in your c-spine can cause those zings for sure. I do hope your going back soon, and that something subsides so you can get moving around again with your family :)

-Shell

[HVAC]

Okay I am not a Doctor. I was told a lesion on a MRI is just something seen. the Doctors have to figure out what it is? Sort of like a spot on an radiograph has to be identified.  In my case they went in many directions before they came to MS. Each case is different.Your case sounds very complex. My best guess is it were me to keep pushing for answers, saying if you can't give me an answer who can you send me to who can.

Some Cancer treatments can cause Neuropathy so some Doctors just assume if you are a Breast Cancer Survivor that is the cause and they look no further. You may need a Neurologist who will look farther and exhaust all possibilities which may take awhile.

Sounds like you have had enough stressful medical stuff for one lifetime.

Alex

[hollyrachel]

Yes, you are so right...they are doing tests for sarcoidosis and Devics desease, but my vision is fine. I am going back to the neurologist at HUP in Phila tomorrow, praying hard for answers. All they seem sure of is that it is a demyelating disease, the steroids seemed to help a bit with the numbness, but when I walk or stand the burning and numbness comes back. I still have a feeling all of this started with the root canals, the timing seems likely, but I cant seem to find any data showing a connection on the web. The neurologists in Phila were leaning toward that as well, but now after the 2nd MRI they are leaning away from that. I have so many questions prepared for my visit tomorrow. Unfortunately I am working with a resident that has already moved on from this rotation and she is now doing ambulatory. She does call back when we call, but I hope she is working with experienced Neurologists at HUP and not just the resident team. My sister and mother have very "rare" auto immunce diseases that even the DC docs could not diagnose and cure or treat. My sister's immune system attacks her white blood cells and my mother has full body migraines on a daily basis, she literally has seisures daily.  The demylating lesions may be my cross to bare.

[HVAC]

You should not just have to bare this. It may be complicated but calmly push for answers and if they say I do not know say can you point to a Specialist who can? That is what I did until I finally got a diagnosis.

hang in there.

Alex

[COBOB]

Devics desease is easy to rule out.  There is an NMO Antibody they can test for.  The Test Mayo reviewed was most likely OC bands in CSF, not blood work.  There is no blood test for MS.  As far as OC Bands in CSF, 1 in 10 people with MS has no unique OC Bands in CSF.  If there are 400,000 People with MS (PwMS) in the US, 40,000 have a negative OC Band test.

You need a good neurologist (preferably an MS Specialist) to sort out all the results and to look at you as a patient.  All the tests are clues and tell them what it is not.  It takes a doctor to say that it is MS once they figure out it is nothing else.

Bob

[rendean]

Hi and I'll add my "Welcome" to the others,

You have had your share of health issues but congrats on being a breast cancer survivor! We have Health Pages here on the forum, located in the upper right hand corner of this page and next to the yellow icon. There is a wealth of information on a variety of subjects including one specific to MS mimics. Below is the link to that page:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

I do hope they can find a cause soon and relieve your suffering! However, since MS is a disease of exclusion with many, many tests to wade through, you may have to be patient a little while longer. Do you have a specific list of tests they have performed? Perhaps someone here may have experience with that particular testing. Said the eye test was okay. Did they do testing to see how well the electrical impulses reach your brain after being stimulated in your arms and legs?

Let us know how things are going and please feel free to ask us any more questions you may have or for that matter , feel free to vent about endless tests...we all understand that one here.

Take care,
Ren

[hollyrachel]

Thank you all for your responses, I went back to the neurologist at the Univ. of Pa, they are now testing for a possible auto immune response from my cancer treatment, where my own immune system may be attacking my cord, or a new cancer. They did an EEG, bloodwork again sent to Mayo, I have a 4th lumbar puncture scheduled for July and a 3 MRI of the brain and cericall spine.  They are now leaning toward MS but want to see what these tests results show. My gabapentin was doubled from 300 to 600 mg,..and now I wait...