Just Diagnosed with a rare form of MS

[deborah0904]

Well, I had my appt. with the new Neurologist today and received a partial diagnosis.  He told me that I have a very rare form of Multiple Sclerosis and there is no one in Arkansas who will be able treat me.  Looks like I'll have to go out of State to find out what type of MS that I have and what is my treatment options.  

The places that I may have to go are to Kansas City but I don't know the name of the facility there.  Mayo Clinic, Jewish Barnes, and someplace in Houston Texas.   Does anyone have any knowledge of MS specialists in these areas?  If so, what are your opinions about them?

Does anyone know the role that polycystic ovarian syndrome can play in MS?  I have had a hysterectomy but have the residual effects of the pcos such as the acanthosis nigricans.  I kind of gathered that the Neuro felt as if this could be playing a role in this?  I'm sure interested in what anyone has to say.

Thanks!

[Jpine45]

My neurologist just told me the same thing after being in the hospital for 10 days. I see an ms specialist in a few weeks who will give me the actual diagnosis.  My neurologist did want to say exactly in case he was wrong. Prayers and good wishes for you

[Lulu54]

Hi Deb,
Like Heather I read your post - but instead of thinking on it I went searching to find anything I could about "rare" MS forms.  I don't know enough about MS yet to think on anything.  The closest I came up with was the very low frequency of patients being diagnosed with primary progressive MS as being rare compared to the numbers fro RRMS patients

I would definitely send Lori (lbradley35) a PM to get the number and name of her MS specialist in Arkansas.  Lori will be a great resource for you.  ShadowsSister is right that you need to find local medical help because you will use them for years and don't want to travel all over the country for assistance unless you absolutely have to.
.  

Please let us know what else you find out - lots of us here are very interested.

Curious, Lulu

[lbradley35]

I live in Sherwood, AR and  I work in Little Rock, AR. I have a lady MS Specialist, who is in North Little Rock. She is wonderful and so is her staff. You never have to wait, her nurse emails and calls me any time I contact them, she provides me all the medications I need - I have actually made request and she usually agrees that what I need.  I have multiple autoimmune diseases and she takes good care of me. Currently, we are waiting to find out if I have melanoma, and I have gone deaf in my left ear due to the MS - which is rare. If you would like her name and phone number send me a note...otherwise it get blockout
Lori (lbradley35)

[hbananas]

Please check your private messages, I live in one of those areas.

[Heather3418]

Hi Deb..

I had read this post yesterday and didn't know how to respond.  I put it on my 'things to think about list.'  Please keep in mind that I am NOT a doctor, only a woman that has been dealing with MS for 13 years.

Throughout those years, I have heard of a "rare" MS.  It was explained to me that it was actually a "benign" MS.  Which I believe is a kind that you have that rarely if ever represents any symptoms.  Or you may have one attack and never have another.  My cousin has "Benign MS," and her only symptom for the last 30 years is fatigue.  She has a few lesions on her brain, none in the spinal cord.  If you could call it an attack, she has been in an "attack" for the past 30 years. I'm not sure I understand benign MS.

I don't understand how your doctor says that you can have a rare MS, without actually being firm in his diagnosis.  I don't see what having PCO can do with having MS.  I too have polycystic ovaries and have had since I was in my teens.  It is much less now that I am going through menopause.  I am now 55 years old.

If there has ever been a connection between the ovaries and MS, this is the first I have ever heard about it.  Especially with MS being an autoimmune disease.  POC disease has to do with out of kilter hormones, so I don't see him tying it to an autoimmune disorder.  I am really confused by that statement.

Your strong reflexes (hyperreflexia) is very common in someone with neurological problems or trouble in the spinal cord.  (My doctor stands to the side when he is testing my leg reflexes, for fear of getting kicked in the gonades...Smart doctor) Yes brisk reflexes are abnormal.  

I am really interested in the rest of your story, when you go to see another doctor.  I really am.  Would you please keep us informed as you go along your journey, so I will finally understand what is meant by "rare" MS?  I am always learning.  

What YOU learn over the next several months, will help teach alot of us, more about this strange and unpredictable disease.  Even we old timers of MS can learn something from your case.  Don't forget about us, okay?  We want to learn with you.

We all send you the biggest of Forum hugs, dearheart.  We are with you every step of the way, in this process of discovery.  We all want to help and be of great support to you.

We will be following your future posts with great interest...

Big Forum Hugs and all the best, Deb,
Heather

[tot_teacher]

Deb -

I'm wondering if your "type" of MS seems to deal alot more with your sensory systems ( hearing, seeing, taste ) and your autonomic reflexes ( breathing, blood pressure, digestion ).  I too am having strange symtems that don't seem to scream "typical" MS.

Hugs,

- Alisa

[susieQ1960]

Cleveland Clinic Mellen Center for MS in Cleveland, Ohio is a well known hospital. I live in NE Ohio and have been treated there. Do a GOOGLE search for Cleveland Clinic and MS and you should easily find more information on this treatment facility.

Sending love and prayers your way .....

Peace.

[ShadowsSister]

I am not clear as to what the Neuro meant? So it is difficult to give you a clear answer. I have a lot of spasticity connected to my spasms. I call it locking, and I just have to wait for my body to release it's self. I don't think this is very rare though. So maybe if you could give us a little more information it might be useful.
I am so sorry there isn't a MS specialist in your area. It takes time to get a good team of Doctors together, and having to go out of your area doesn't help.
I will keep you in my Prayers...
Sending you Loving hugs....{{{~!~}}}}

[deborah0904]

Thank you, Mary Kay.  I'm relying on God to get me through.  Selah is one of my favorite Christian groups and they sing a song called "Press On".  That is going to be my motto.  I won't lie, I was a bit taken back this morning but am much better tonight.  

Thanks again!  I appreciate the thoughts and prayers!

[mary_kay]

So sorry to see that you have more to worry about.  Does it ever stop?!?!  Just keep on keeping on, girl.  I don't know about you, but I am pretty tired of waiting to see what's next.  Thinking of you...a kindred spirit.  Mary Kay

[deborah0904]

He seems to think it could have something to do with the hormones and the Polycystic Ovarian Syndrome.  He mentioned having a brain biopsy but that may not be an option as it would leave me more neurologically disabled.  

I'm in shock.  I do feel good to be validated in my problems but got more than I wanted.
Thanks for the reply!

[Wobbly]

oh wow, sorry I can't answer your question... but when I went to the MS specialist...after seeing quite a few other Neuro...she said she couldn't Dx yet... had to rule out some things

but she said I could have a Rare form of MS?  She didn't elaberate on that and I wondered what type of MS?  

I myself have never heard of a rare form of MS till then?  So, this is the second time I'm hearing of it... did your Neuro mention what type or why she feels this?  I wish mine did...and why she needed more info?

good luck with this and keep us updated...ok

take care
wobbly
undx

[deborah0904]

He doesn't know what kind of MS it is.  He's a MS Specialist here and said he's not ever seen anything like it.  He looked at my previous Brain MRI's, Spinal Tap results, VEP's etc.  I just happened to have copies of medical records from 1987 when I began having problems.  

He was surprised at my reflexes as they were very strong and spastic.  He told me that was very abnormal.  

I have had spells in the evening after getting up to go to the restroom and when I got back into bed I'd have sometype of neurological episode that one Dr. thought was a stroke but no sign of strokes.  The episode lasted only a minute or two.  

[JonM]

What rare form of MS did he/she say you have?  How was it DXd?

Thanks
Jon