what to do

[nana68]

I am a very long and tiring case....five years ago I had bellspalsy after that kept getting pin point rashes and infections til in 2010 I had respiratory failure..have had a bunch of blood tests and nothing shows except for mirror pattern oligoclonal bands...2 junxtacortical lesions,2 occipital horn lesions and 2 frontal lobe lesions plus a high total complement. the hospital was convinced of lupus but everything kept coming up negative,another doctor thought left overs from critical illness polyneuropathy and now I got a ms specialist that thinks its ms. In any case he wants me to start on avonex that is fine if I do have ms but if its some other disease the treatment might do me in because as of last week I have a high d dimer (blood clotting) so I am very worried

[nana68]

the mri findings are as follows 2 10 mm a little irregular but fairly round hyperintensities near both occipital horns. 2-3 mm juxtacortical hyperintensities and 2 frontal lobe hyperintensities. plus mirror pattern oligoclonal bands.

[nana68]

the pin point rash was years before mri's they thought I had lupus at one time and everything came back up negative. I have severe pain at times in my chest,shoulders and novacaine like numbness. I passed most of the neurological physical tests all except for the strenghth he concluded that I have quadriparesis but I have been that way since having respiratory failure and polyneuropathy/myopathy from icu paralysis. I get a sore mouth sometimes and clonus in my ears. I feel like I am carrying around lead and it doesn't matter if its hot or cold. I feel like I have the flu twenty four seven. My hair is very wiry and brittle now and breaks easily.I get pressure in my head and have tinnitus.I have had alot of cysts on different places and nodules and flat round lesions on my hands that the dermatologist just froze off.

[Guitar_grrrl]

The pinpoint rash may have something to do with your high d dimer.  Do you have a hematologist?

I'm curious about your MS symptoms, and any neurological exam findings.

[maxthecat43]

Did you have the pinpoint rash before having the MRI's done?  I just did a little research, and both cortisone and MRI's can cause tiny red spots to occur in the skin.  In my case- having been on IV steriods, and having had multiple MRI's- I'm going to blame my spots on these things...

[maxthecat43]

Sorry, there are several typos in my last post :(

[maxthecat43]

Welcome ;)

It sure sounds like you've had a tough time of it.  I can see why you're concerned...  The neurologist is basing his/her dx on the mri's and an examination of your neurological symptoms.  But if he thought the Avonex would be dangerous to you, he wouldn't have you taking it.  But if you;re ery worried, place a call to his office- and leave a message about your concerns.  

The pin point rash doesn't sound like anything I've ever heard of, as having to do with MS, but it does make me curious- because I have it too... (Hmmm, something for me to research now.)  Sad to say though- whether you have MS or not doesn't make you immune to having other health problems.

The positive thing is, that your team of physians seems to be actively trying everything they can think of to help you.

(((Hugs,)))
Tammy

[anon07072023]

Wow, I'm not for sure what to tell you.  Do you have MS like symptoms?  I would guess that you would have to, if your MS specialist says they think that you have MS.  If you do REALLY have MS, then, yes, you would want to start a disease modifying drug, such as Avonex.

However, I can see your point about not wanting to take this if you really have something else going on with you, plus, your other medical issues.

I wish that I could be more helpful...
-Kelly