MRI results bring on a bout of depression

[SurvivorLB2255]

Hello I hope you can help me understand my feelings. Back in May I saw an Ophthalmologist and he sent me to a specialist who sent me for an MRI. They were concerned that there may be a tumor at the back of the right eye. There is  some intermittent pain and blurriness but sometimes the other eye hurts also. They saw signs that I have MS so they sent me for a second more complete  ( thin slices) MRI at Mount Sinai Hosp in NY. I then waited 3 weeks for the results, which was a roller-coater of emotions for me waiting and thinking. Just today the Opthm.  from Mount S. hosp.doctor called to say the written report said the test was unremarkable. He hadn't in all that time looked at the film or conferred w/ head of radiology re: my MRI. like he said he would. Now, instead of feeling relieved or happy
I feel depressed, angry and numb. I take Buspar and Celexa for depress. and anxiety, so I feel like that should even out my mood.  I was diagnosed in 2003 and started on Copaxone and recently on Ampira ( started 7/2010)and ReQuip for M.S. Hydrocodone for pain , among other meds. What in the world is wrong with me that hours later I am still crying and agitated? I asked questions of Dr. M.but felt dissatisfied with the vague answers. Does this sound familiar to anyone here? Loretta

[SurvivorLB2255]

Thank you Sarah x for the helpful tip regarding making paragraphs for easier reading. I am used to using FaceBook IM with my sister and we don't punctuate. I know, a very bad habit. However, I do know better and will use paragraphs from now on :)
I've reread my second post and quickly realized that I have smooched together several factors that may have made things more murky, than clear as I intended. To any readers who I have confused I am very sorry. The issues of my arm's nerve damage and the RSD( Reflexive Sympathetic Dystrophy) theory, in retrospect , are quite different from my original intent. I should have stuck with my eye condition.

Allow me to make some additional points. The first Ophthalmologist that I saw stated that the eye spasms and tics were not something treatable and he added that they either go away on their own or I have to learn to live with. Following his exam he told me there was macular degeneration both eyes, the right eye had beginnings of a cataract, scarring and either a lesion or a tumor. Maybe too much info was blurted out by this doctor? He recommended I see a retina specialist immediately.  
Next Optho/Retina Spec.,  Dr .K., did the usual battery of test and then stated I was to return the following day for more tests “..because I don't like what I am seeing”!!!
That is when I started getting concerned and anxious. The next day after the tests, Dr. K. showed me the image of my eye on the computer screen pointing out the dark shadow area, which he felt was a tumor. He explained that my field of vision had loss some of the peripheral sight, there is a blind spot and the GHT is outside the normal limits. Then he ordered a complete blood work-up ( which I had had before) and he recommended I see a colleague of his, but unfortunately he didn't take my health insurance.
   I had the blood work done and for the most part it showed within the normal range, except for the Herpes virus was positive with a value of 3.08 ref. Range 0.00-0.89. and the SED rate was elevated 23 value with a ref. Range of 0-20 and BUN ( blood Creatinine ratio high at 24.7value ref. Range 10-20.

Next I spend the better part of a week calling specialists and that is how I came across Dr. M.'s name and address at Mount Sinai Hosp. He did all the tests himself and stated I needed to have an MRI ASAP. So, the first one was at a Doshi Diagnostic, ( a chain operation throughout N.Y.) on April 29th, Unfortunately they just did a standard  
brain scan. Their report showed: there is minimal hyperintense signal in the periventricular white matter adjacent to right lateral ventricle.....a distort 4mm and 3mm hypertense white matter focus in the perivent. White matter on the left frontal lobe...best seen on the following images.....There is no evidence of an intraconal mass.....”

Dr. M. was unhappy with these results because they were not “thin enough slices” and so I had the MRI repeated again at Mount Sinai Hosp. It took Dr. M. 3 weeks to get back to me mainly because he was on vacation for one of those weeks. When he did return my call he was just leaving the surgical department, did not have my chart in front of him or the film to read. That is why I said earlier, it feels like we have unfinished business. I told him I've been having migraines and stabbing pains off and on in my right eye. He said there was some enlargement of blood vessels but was vague on any more info. He is a man in his late 60's if not 70 and I am relying on his experience, but maybe he is overwhelmed with his case-load.

My expectations were that I would be told it was a Herpes infection, or optic or some other kind of neuritis. My expectation was that radiology would be able to say what 3 professional doctors had visualized, if not a tumor what then? This did not seem unreasonable when I spoke to Dr.M. On Tuesday, this week, however, after reading some very good points made here in the M.S. community, I think I expected answers that will not be forthcoming.  I know I have given a ton of info here yet, I hope in some way I have given a more complete time-line.

My husband, Mr. B.  and I have been together since 1979 and were married in 1989 when I was wheelchair-bound. I now walk with crutches and use the W/C for long outings. Mr. B. is a good man, he does his best to read M.S. material and to understand my condition but recently is finding it hard to cope with my myriad of symptoms.

   Also, I would like to know how to post my comments so that a doctor may respond to them. Thank you all for your concern and advice, Loretta :)

[sllowe]

Hi Loretta,

Adding on a belated welcome to you! I'm sorry that recent news was disappointing - guess we all really want solid answers to our problems even when we are dx'd.

We want them to say, this or that is causing what you are experiencing! And, when they don't, or can't,we are left w/the issue/pain/dysfunction unanswered.

I hope we can help fill in some of those blanks. There are some meds in the hopper being studied for MS and pain. I just read about it in the most recent edition of the MSQR. Some on our forum have tried Lyrica w/positive results and then some others not.

Looking forward to having you with us,
-Shell

[Sparkysarah]

Just a final comment which I meant to make when I posted earlier... you chose your name and I think that there was a reason for this...you are a survivor so believe it....

Love and thanks for update and more detailed info.

Sarah x

PS I hope you don't mind me mentioning it but in future it will help everyone if you break your posts up into small paragraphs as a lot of people find it hard to read a large chunk of text.

[SurvivorLB2255]

Thank you everyone for taking the time to reply. To clarify my situation( I was obviously very upset last night when I posted so forgive the conflicting information)  I do indeed have M.S. I have had symptoms ( spasms esp radiating of the inner thighs, fatigue, balance/walking problems, neuralgia, neuropathy and rotating body and head PAIN) for over 20 years. I went for a long time with the "Probable M.S." label as my Dx. My currrent neurologist Dr. P. Dx'd positive in Nov.2002 and started me on Copaxone in Jan, 2003. He is an excellent doctor and he is treating me for M.S. and like Alex stated, he is from the old school, where you do not tell the patient where the lesions are located and how many there are. This whole episode began in late March of this year when I mistakenly injected my Copaxone into the ulnar nerve in my arm, Thereafter I have had tremendous nerve pain in my left arm, which then spread to neuritis and neuralgia in my face and eye spasms. Dr. P. recom'd a full exam by a Ophthalmologist and so the roller coaster ride began. In early June I  took a 5 day Rx course of Achtar (pseudo-steroid) and that has somewhat decreased the flare up in Re: to the face and eye pains.The first MRI was showing   demyelination  and "white matter distort" whatever the heck that is. However, Dr. M the 3 rd Dr. opthom/Retina and tumor specialist, clearly  said it was not detailed enough. The next MRI was 3 weeks ago.supposedly with a top-notch MRI screen. Lots of tests and lots of anxiety in a short space of time.There is no doubt about having M.S. and my depression has been a on-going problem for many years. I see my therapist every 2 weeks and neruro. Dr. P. every 3-4 months.SarahX made a poignant observation saying I am feeling uncertain that I am being given the correct Dx for my visual problems. It is not like I am wishing for a tumor and in my opinion this is optic neuritis.  Dr. P. agreed that the severe nerve damage made indeed have resulted in the syndrome RSD, HOWEVER, he said having M.S. makes the other ( RSD) Dx near impossible, so I am being treated for M.S. peroid. A Physical Therapist conferred that there is nothing he can do for such bad nerve pain and only time will tell if it will heal. I have faith that it will. So many wonderful and supportive comments have been given here and I want to thank each and every one of you kind people for caring. Loretta

[twopack]

Your pain is so palpable Loretta.  We can't help but feel it with you and want to help you figure this out.  But I'm a little confused too about what has happened.

Was this MRI of just the optic nerves or the entire brain or something else entirely?  I'm not sure if unremarkable means insignificant, without lesions, or unchanged from past images.  And I'm not sure who is giving you the results.  Is it being suggested there is no visible reason for your recent eye problems?  Are you afraid your MS diagnosis is going to be withdrawn?  How confusing and scary any of this would be.

Please make sure you get this MRI on a CD and written copies of all the reports connected with this whole scenario.  It sounds like you were passed along from one specialist to another for a while and it could be the whole bunch of them have lost track of what is going on with you.  I'm afraid you are going to have to help all of them get their bearing even though you not feeling the fight is in you.  

Depression is very common as a symptoms of MS.  I can easily escalate as a consequence of living with MS - or the doctors we must depend on!  I suggest you allow a little of that depression to evolve into anger so you are fueled with energy to find your next direction.


An aside:  Sometimes I wonder why radiologists are even allowed to interpret findings unless they are going to go into greater detail.  They see so little of the total patient.  Nothing but a few symptoms to match to an imperfect look at the innards of one body part.  MRI is a wonderful thing and certainly preferable to slicing into body parts but it's not an exact tool yet.  And Quix has told us often enough that not every body is put together the exact same way.  The medical professional are mistaken if they think any test is a be-all-and-end-all diagnostic aid.

Mary

[HVAC]

I personally do not want to know MRI results. My therapist calls is the "NOceblo" instead of Placeblo meaning be told certain things can make you feel worse about your condition.

The truth is MRI show so little of the disease but they all the Neurologists have at present. I have heard MS Specialists talk about how even the best MRIs show so little. I am talking 7T and above.

It is like I had seven different tests on my gallbladder and none of the tests got it right. In one case the technician did the wrong test. Luckily my Surgeon went on symptoms and took my very infected gallbladder with a stone in the neck out.

I am up for my full MRIs the first since diagnosis, the last being sixteen months ago. I figure it is for the Neurologist not me. I do not want to know either way.

Alex

[Sparkysarah]

I just wanted to say Hi Loretta  as I don't think our paths have crossed yet.  I think you will find that in general there are many people who are very dissatisfied with vague answers and being messed around by doctors. However although it is comforting to know that you are not alone, everyone deals with things in an individual way and at the moment it sounds like you are feeling pretty low.

I am a little confused by your situation as somewhere I think I read that you have had MS for 20 years, and then above you say "they saw signs that you have MS" and you mention that you were dx'd in 2003.  I am guessing that you have been aware that you have had symptoms for a long time but it took until 7 years ago to get a dx.

I am wondering why you think you are still crying and agitated. It feels like you had hoped for answers and they have not been given and this has left you with uncertainty about your visual symptoms.  I think you are being a little hard on yourself and don't worry if you want to cry. However there is a difference between feeling a bit low and depression as you are obviously aware. How long have you been treated for depression and anxiety?

If you feel that your sx have increased and you are having more periods of feeling very low then it may be you need to go back to your doctor to discuss this. Sometimes just keeping a simple record for yourself of how you feel on a scale of 1-10 each day can help you to gauge your feelings.

I am wondering what else is going on in your life that may be adding to your anxiety and in addition if there are certain situations where your anxiety increases.

What can you do to help yourself? I think that when one feels low there is a tendency to isolate oneself instead of reaching out to others for some company. Have you any friends or family who you can talk with. Also have you thought about seeing a  counsellor?  What about exercise....are you able to do anything (as I am not sure how your sx present) as good endorphins are released when we exercise and this can help with depression.

Finally it seems to me that the reason for your recent depression hinges on feeling dissastisfied with vague answers from Dr M and so this may relate to you not having felt heard or listened to. So I would ask you to think about what you could do on another visit to help you get the answers you want... I am also wondering if this has struck a chord somewhere within you and triggered another time in your life when you felt you were not heard?

Anyhow I am sure that others will chip in and don't feel alone as support is around...but sometimes it is necessary to find the courage to ask for help.

With love and hugs

Sarah x

It may be worth thinking about how you ask the questions and ensuring that you are assertive, making sure that you take a list and asking politely for answers.

[Sumanadevii]

Are you sure your not feeling depressed because you don't feel physically well and the doctor is saying there is nothing wrong?  You wouldn't be the first nor last to feel that way.  We want the medical community to confirm there is a reason we are feeling weak.  When that doesn't come, we feel let down.  Worse we begin to blame ourselves.  

I would get copies of my MRI.  I would then visit another doctor.  Even a board certified neurologist can miss things.  I know, I sat under the care of one for three years.  The MRI might not be a high enough strength.  He may be depending on someone else to read the results that missed big clues.

I hope you regain some strength and can advocate for yourself.