Impatient

[lorilou58]

Female, 58, N. Berwick, ME, member since Feb 2014

Seems like I have never felt right since I was diagnosed with Sarcoidosis in 1992 when I was 41...I appear to be in remission and have been for quite a few years however my lower extremities have always been week. I have been clumsy for a number of years but I am more c   lumsy and have taken two hard falls between Sept and Nov and trip numerous times ...MRI's taken in 1996, 2003, and 2006 did show white matter disease and all reports mentioned poss MS, but I kind of slipped thru the cracks after that...had another MRI with & w/o contrast 1/2014, comes back with more lesions as well as having an abnormal high signal in the Basal Ganglia, etc.  I flunked just about every neuro test I was given on 1/10/2014...the neuro admitted that I have a problem with my gait/balance but basically referred me to a psychiatrist and for PT.  Good news I am going to a MS Specialist in Scarborough Maine this coming Wed.  I know I have something wrong with me and I know my balance has gotten worse...Hoping to get some much needed answers on Wed.  I am actually wondering if when I was diagnosed with Sarcoidosis in 92 if I maybe had MS then also....Sarcoid is an autoimmune illness.....I also had mono when I was about 13 yrs ago...keep wondering if there is any kind of affiliation?

[LisaJF]

Kyle:

No person would question your sincerity or good advice.  :)

I think they understand what you meant!

<3 to you!

[kwarendorf]

I'm not suggesting that portions of a medical history be omitted. I would certainly not omit a previous sarcoidosis dx.

What I am suggesting be omitted is any sort of hypothesizing of the relationship between that diagnosis and other possible dx's. Report the facts and let the MS neuro draw conclusions (do the heavy lifting.)

Kyle

[LisaJF]

Absolutely Ess.

I don't see anything wrong with expressing concerns of worsening gait/balance or other issues that interfere with your daily activities of living.  And wanting to know if it is in fact your Sarcoidosis or is there anything else that may be brewing.  This is a valid concern.  Apathy would worry me more and a doctor in my opinion.

I understand what Kyle is trying to say and not sound like your self diagnosing.  It will put the visit on tilt depending on the doctor's personality.
Although, I know if I already have an autoimmune disease and things are getting worse, I would inadvertantly ask, "This could not be.....etc. could it?"  Nothing wrong with that.

That's a fact.  Not a health anxiety.

Good luck to you on Wednesday.  Please let us know

Lisa

[essdipity]

But I hope you're not advising her to omit telling this doctor about the sarcoidosis diagnosis. This is an important part of her medical history. An MS doctor will know to test for the 'neuro' variety of this illness, so she will not need to mention that part.

ess

[kwarendorf]

Welcome to our world :-)

Neurological diseases are notoriously difficult to diagnose. It is possible that your 1992 diagnosis was wrong. Instead of sarcoidosis you did and do have MS. Many permutations and combinations of conditions are possible.

I think it's great that you are going to see an MS neuro on Wednesday. You should be able to start getting answers. I would not volunteer information that isn't specifically asked for. If you start mentioning things like neurosarcoidosis (effects about 5% of those diagnosed with sarcoidosis) you risk irritating/aggravating the doc. I don;t mean that docs should never be irritated or aggravated, but at the first visit let the doc do the heavy lifting.  

You are likely to get better info from the doc if you allow him/her to reach their own conclusions.

Let us know how things go on Wednesday.

Kyle

[maxthecat43]

While I truly hope you don't have either disease, when I was researching sarcoidosis of the brain some of your listed issues were mentioned.  Especially cerebellar ataxia.  Only a relatively small percentage will have central nervous system involvement, but it does happen.  Apparently, this disease is pretty difficult to diagnose.  But so is MS.  

If you know something is wrong, don't stop until you get answers.  A lot of people are told they have a conversion disorder, at some point in the process.  That frequently means that one of two things is going on: either
a). The doctor lacks the skills to diagnose (or properly refer). or b) The doctor is looking for an easy answer.

True conversion disorders are actually fairly rare.  It is worth going to the psychiatrist, just to get it ruled our though.

[karryon55]

Hi there & welcome to the community.

Has anyone spoken to you about Neuro Sarcoidosis? It's one of the very best mimics of MS. I have a family member with Sarcoidosis but it never went to her brain. This is very serious when it does go to the brain & requires quite different treatment to MS treatments.

I would think this is the first place to start but I'm certainly not a doctor. Your Sarcoidosis may not be well controlled & has caused these brain lesions. Sarcoid lesions can look almost identical to MS lesions on an MRI. I can only imagine how much you need answers & wish you well on Wed.

I'm sorry you are having such a rough time of it. Like most autoimmune diseases they are not sure what causes Sarcoidosis but virus is one of the suspects. Are you still on steroids? It will be interesting to hear what the Neuro thinks. Keep us posted & I've got my fingers crossed for you to get some answers.

Take Care,
Karry.