Seven years with out proper diagnosis! Frustrated,Plz Help,

[Bibek42]

Hi all,
I am giving below My symptoms and diagnosis in chronological order.

1.2001 >> Erectile Disfunctoion

2.2001 >> Feeling extrem fatigue ==gone afeter few weeks.

3.2003 >> Waking difficulty..Difficulty in passing urine and urine leakage .. Constipation
  Dxd PPMS.Had first relapse.

4.2004 >> Dxd "AQUEDUCTAL sTENOSIS" rejected by neurosurgeons saying "Arrested Hydrocephelus"

5.2005 >> Bladder incentiniance ( unable to hold back )

6.2006 >> Dxd "Demelinatory Deises,?Prograssive MS" on IMURAN since than.Had second relapse.
  doctors said demeylination is evident from the MRI.My WBC count were over 10,000.

7.2009 >> Had third relapse ,the neuro suspect "Vesibular Pathology " and advised MRI of dorsal
  spine I did it for brain also,the technician did found an infection between D1..D3


The neuros are now seems to be confused (whether to name it as MS),one of the neuro asked
for a MRI looking for vestibular pathology ,while the MRI was in progress the technician asked for
contrast looking at a possible infection betweeb D1..D3 and it did exist (the neuro says it will come and go)

The other reason being ,no new symptoms has surfaced even after theee major relapses.Only the
existing symptoms(since 2000),has aggravated a little ,perticulerly walking got worse.
(no physical exercise)

I urge you to kindly show me some light out of this darkness.Seven years and no proper diagnosis ?
I am depressed,frustrated.

Other information:

HAD HAVE TWO EPISODE OF VERTIGO IN LATE NINTIES ,ONCE WITH VOMITING.

CSF studies came negetive.
Should you need more info do ask for the same.

Please//pleaseee let me have your wise opinion / suggestions.

[Erin0313]

Alex,

  Wow! Not that it's an award that you want but I think that you might be the longest limbolander around.

  When I saw your post I thought maybe you had a typo on the 1960's until I got to the part where you said 40 years.

Next time I am thinking my limbo of 12 or so years was forever I will think of you. Thanks for posting!

Hugs,
Erin :)

[HVAC]

Sounds frustrating. I wish I had an answer. Are you getting treated for symptom at least?

In my case being diagnosed has done nothing for treatment. It has given a name to a mystery.

I had my first neurological symptoms so severe to send me hundreds of miles to the Mayo Clinic in 1966.

I was sent hundreds of miles to Duke in 1969 because of different neurological problems.

In 2007 my PCP realized something was really wrong which started an whole series of tests and Specialist until I was diagnosed with MS last April.

So in my case the journey was over 40 years. Luckily most folks get an answer sooner.

During that 40 years was I getting treatment for symptoms? yes. Has anything changed since diagnosis? not much.

Actually I think the first year was more stressful than limbo.

Alex

[Erin0313]

  Hi! First I want to tell you that you are not alone. Many of us spent atleast a decade looking for a dx and it is scarey & frustrating.

I was wondering of you have been seeing the same neuro through this whole process? Have you had all of the blood work done for the MS mimics?

It sounds like you have had several really big dx but they keep changing (which is par for the course while you search by the way) . What is the current dx and what meds do they have you on?

We have lots of great ppl here so I'm glad that you are with us. Hang in there!

Hugs,
Erin :)