In the twilight zone? Let's call it that.

[fugue79]

In the continuation of the diagnostic limbo, my primary has not been able to reach the neurologist who called me last week with news of a lesion on my cerebellum. He won't return my calls either, so I'm looking for a new neurologist.  And just for added humor, my primary said this to me:  "I think we don't need to worry about that lesion. Let's focus more on your herniated disc with physical therapy."

My symptoms are far beyond my mild herniation and she wants me to sign up for jazzercise?

Sometimes I wonder how many are going through this same thing; not being taken seriously, being told you're imagining your pain, being brushed off while pain worsens.

Does anyone ever experience a burning in the throat and side of neck , or a lump in throat sensation when swallowing?  I know that can be caused by GERD, but can it also be a neurological symptom?  I'd feel some relief to hear that I'm not alone in that maddening symptoms.

[fugue79]

Thanks!  I didn't know it would be so easy to find an MS specialist.  I took your advice and did a little research.  I have an appointment this Monday at an MS research clinic in the city.  This may move things along in ruling it out or finding a differential dx.  Thank you for the reminder to do this.  
It feels like a good step!  

A million thanks and well wishes!
Nicolas

[essdipity]

Hi, fugue. I'm not sure if you're describing a 'black hole,' which can be seen T1 images only. For information on this, see

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions-Lesions-Lesions/show/762?cid=36

Cerebellar lesions are quite common in MS. I wouldn't worry about the imaging techniques, lesion locales or appearances, though, because that part is way out of our depth of technical understanding, and could lead us to a great deal of worry and conclusions that are likely false.

What I would do is make sure I have a really knowledgeable doctor who is an MS specialist. I don't know if the one you refer to above is in Buffalo, but you need a local doctor in addition. Why not take the suggestions of Kyle and others in the NYC area and find a a good local MS specialist? So many of us, me included, have gone to multiple neuros, even 7 or 8, before we found the help we needed. We try to pass along here that getting to the right doctor is often the key. That doesn't mean there won't be more waiting for developments, as MS is on its own timetable, but it does mean a greater likelihood of getting clear answers (and treatment) sooner.

ess

[fugue79]

Hello everyone! I hope you're feeling well.  I did find a good neurologist/surgeon who listens to my concerns.  I'm still in limbo with this lesion and must wait the classic 3 months for a new MRI to detect changes.  I got to see this lesion on the scan.  It is a centimeter , almost circular, does not enhance, and has a small empty black space right in the middle.  It's in the left cerebellum.  The neurosurgeon is sure it is not a tumor, which is good. But he admits that he is not an ms specialist and can't say for sure if lesions ever present this way.  Have you ever heard of a single no enhancing lesion with a hole in it? It really just looks like a gray sphere with a small black spot right in the middle.  Weird! I hope to find out more soon.  My numbness and tingling has gone away, but I'm left with pain (like tendinitis) in the tips of my hands. Thank you for all of your thoughts and support through all of this!

[kwarendorf]

Getting to the diagnosis can indeed be more frustrating than dealing with the diagnosis.

I wish you luck up in Buffalo. Finding a doc you can talk to is very important, even if they are 400 miles away :-)

Keep us posted!

Kyle

[fugue79]

Hi Kyle. I'm glad you pointed that out about Radiologists. That actually makes me feel much better. My neuro doesn't return my phone calls unless I call and leave messages for a week. I did hear from him today, and was told that he thinks my lesion is a blood vessel. My neurosurgeon disagrees. I'm just going to Buffalo since I'm from there, and can get a little visit home along with other opinions.  I'm starting to wonder if this not MS lately because I haven't heard of MS beginning with a lesion on the cerebellum.  Oh, and for all of you who have been diagnosed, I hope it brought you a sense of clarity and perhaps some relief!

Enjoy the big heart day!
N

[kwarendorf]

Hi Fugue - Many of us have been where you are. It's not a fun place.

Radiologists are not diagnosticians. They tend to list all of the possibilities for the abnormalities they see. It's up to the neurologist to sort them out.

Does your neurologist just not return you phone calls? If so then it's time to find a new neurologist. If you are in Jersey City why travel to Buffalo? There are lots of really good neurologists just a PATH train ride away in NYC.

Kyle

[fugue79]

I feel like I'm in hell, or some variation of it.  I'm worried more because the lesion on my radiologist report says that a tumor can't be completely excluded, and because I feel very bad every day with dizziness and some pain. And yet I still cannot get hold of the neurologist who called only once in January to give me the news.  I made an appointment for the Jacobs Neurological Institute in Buffalo NY, for March, but I really wish I could just find out what I'm dealing with so I can plan. I wonder how often MS or demylenating plaques get confused with tumors, or what they call Black Holes?  It is weird to say that I hope this is a result of MS, but when faced with the possibility of a tumor, I'll take the former.  I'm still trying to find any doctor who can evaluate me before this week is over.  

[HVAC]

Everyone wants to be validated. This is why a diagnosis is so important. Limbo absolutely is the worst. Especially if the medical community acts like it is psychological. Often they grab for psychological to explain anything they can't figure out. I hope you get an answer soon.

Alex

[essdipity]

Here's what Quix had to say about throat symptoms a few years ago--

http://www.medhelp.org/posts/Multiple-Sclerosis/Lump-in-throat-something-stuck-Difficulty-swallowing/show/1348020

ess

[fugue79]

I agree. You get to a point where you don't care anymore what the diagnosis is, as long as something is there to explain the symptoms and get treatment. I hope you find the answers you need too. At this point, all I want to do is rule out cancer and this too is a slow process, especially since I don't know the nature of the lesion yet.

My best to you, and I hope your symptoms don't get too rough.  
N

[LilMinnie]

Oh, I forgot to mention that I do have that feeling in my throat. Like there is a lump or something that makes it hurt or difficult to swallow. Sometimes I gag andI gget either nauseous or actually sick to my stomach.

Not diagnosed, so it may not mean much. But yes, I get that feeling.

All the best, Minnie

[LilMinnie]

I know that it is hard to explain, but I think those who are diagnosed suddenly or unexpectedly are receiving a blessing in disguise.

Yes, the diagnosis stinks. Yet when you're like me and others who have symptoms and no explanation it gets really tough. You can't say why you are like you are. So yes, I understand completely!

At the moment my  neurologist is taking me seriously and is sending me to a colleague who is an MS specialist, but I have also been blown off and hadthings blamed on stress , too.

I hope that you receive some answers soon.

Hugs, Minnie

[fugue79]

Hi Alex,

That treatment was absolutely inhumane and I'm so sorry you had to go through that. This seems more common that what's believable. I hope your in good care and health now. Cancer and MS is a hell of a hand to be dealt.

Right now I'm trying to figure out on my own if my symptoms are more suggestive of cancer or MS. This is tough, and I wonder how many people could easily confuse the two.  Usually my pain is a burning type that gets worse as the day progresses, along with tingling.  

Even after your long fight to figure it out, did you feel some sense of relief to finally know for sure?  I sure hope so.  

Nick

[HVAC]

Sorry for the frustration. I went through it for two years being tested for MS. My Primary Care Doctor sent me to a Neurologist after finding problems on my yearly exam when she did a Neurological Exam. Then she said lets just forget about it its probably depression. I said how can depression only effect one side of my body. She left the room and then called a MS Specialist. It took me over 40 years really for the Doctors to figure out my Neurological. Then another six to figure out I had Cancer. Then you should see the way the Oncologists treat me. I had one ignore me as my heart and kidneys shut down and another yell at me for saying "NO".

Our medical system in the U.S. is the most expensive and too specialized. You have to figure out the right specialist and know what is wrong with you. There are too few MS Specialists and they follow people over time. Six months to a year at a time. Some will make it every three months. I have never had a Neurologist call me back, mine only sees me every 16 months now that I am diagnosed.

Alex