Waiting on PPMS DX..Not fun

[Learninglifeslowly]

Hey Guys,

I have been reading posts on here for 18 months now.  I am getting closer to a DX of PPMS.  It has been a long road and these DR's are so lost when it comes to this disease it is scary to know that I have this and what my care will be.  The everyday symptoms some minor and annoying to others that are much more severe like not being able to sleep and have constant burning through out the body is pretty depressing.  Lab. findings first LP 2O bands 4 month later LP 3 Obands  3MRI's since first symptoms of spine and brain no sign of MS. Drs say no MS but I disagree.  It just hasn't met Clinical Criteria at this point.  You guys are an amazing bunch and I really just need a support group of others that are going through the process and those of you that finally got your DX.  Im sure you all can relate this is very challenging and has been the hardest time so far in my life.  


Thank you,

Jason

[BOK2Bjan]

Sorry you're having diagnostic trouble. Very frustrating. You said you're looking for a PPMS diagnosis? May I ask why you would think it was primary progressive, when no lesions have been found?

I totally agree about the sleep study. I have mixed sleep apnea too, and the drugs are definitely contraindicated.

I have SPMS, after 20 years with MS, and am deteriorating in mobility and othere issues. So I hope you find out its something else! Congratulations on your child! Best thing in the world! Enjoy!  

Blessings, Jan

[BOK2Bjan]

Sorry you're having diagnostic trouble. Very frustrating. You said you're looking for a PPMS diagnosis? May I ask why you would think it was primary progressive, when no lesions have been found?

I totally agree about the sleep study. I have mixed sleep apnea too, and the drugs are definitely contraindicated.

I have SPMS, and am deteriorating in mobility and othere issues. So I hope you find out its something else! Congratulations on your child! Best thing in the world! Enjoy!  

Blessings, Jan

[4happygnomes]

Sorry to see that you are still in limbo, I’m  in the same situation as you...multiple clear MRIs, everything else has been ruled out, progressively getting worse.  It’s frustrating!  I was seen at the Mayo from 12/2014-4/2015 and currently on a wait list to be seen again.  I hope you get an appointment and are offered the 7t mri, and answers!  Let us know how it goes!

Karen

[Learninglifeslowly]

Thanks for replying back.  I have had all kinds of test EVP, 4 MRI's of brain and spine all clear.  The o bands were in the spinal fluid and not in blood serum.  I am declining rapidly just got on some anti depressants for depression eflexer and lyrica. I'm  just not me any more and having a tough time not sleeping.  My legs and arms burn and tingle once I fall a sleep and it wakes me up.  Even after lyrica, bacoflen, and 100mg of serequel,  I should be passed out but nope central nervous system hard at work keeping me up:(.  Do you guys take any thing to help with the depression and sleep?

[aspen2]

Back to the sleep study -- it's time to sort this out.  And lack of sleep definitely leads to depression.

Lyrica and opiates of any kind make my sleep issues worse.  Ironically, so do sleep medicines.  For me, it's because I have mixed sleep apnea, and they worsen either the central OR the obstructive sleep apnea.

My central apnea is because of a visible lesion.  So any sort of central nervous system depressant makes me wake up gasping because I just stop breathing.

I'm telling this because the meds that are supposed to help you sleep may actually be detrimental.

I would also make sure you have your vitamin D, magnesium and b12 levels checked.  Magensium deficiency alone can cause peripheral nervous system issues, anxiety and other issues.

There are many areas you can work at making right while in no-answer land.  Your gp is very important right now.

Hope this helps!

[Learninglifeslowly]

Thanks again for the replies.  Just had another round of MRIs no lesions found.  Good news but still not getting better.  I am trying to get into the Mayo Clinic in Minnesota they just approved the first 7Tesla mri machine for clinical testing.  Hope all is well

Jason

[aspen2]

Limbo is definitely a terrible place to be.  It's very frustrating to not have answers.  

Were the obands in the CFS and not the blood serum?  Positive for o-bands is in itself, not proof of ms.  Many countries are no longer performing LPs because of this.

Burning throughout the body would not be a typical ms symptom.  Have you had a full neurological exam, looking for weakness, balance, reflex and sensory issues?

One thing that stands out - have you had a sleep study?  This is a very important step for anyone in neurological limbo.  Sleep disorders are very common in ms and in a host of other mimics.  Sleep deprivation can cause a host of secondary complications that aren't related to your original condition.

Please have your gp set up a sleep study ASAP, and keep us posted :).

[4happygnomes]

Welcome and sorry that you're here!  Limbo land is a terrible place to be, I've been living it for 2 and half years now.  How long have you been having symptoms?  What kind of neurologist is following you?  Why did you have 2 (yikes!) LP so close together?  Do you have an abnormal neurological exam?    Sorry for all the questions, but a timeline/history can be helpful.

This is a great place to come for support and ask questions.  I'm sure others will chime in after the Holidays!

Karen