I would just like to say, you have and still are having it rough,
I would definately say start with some antibody testing, of the blood.
Have you had any tests for auto-immune diseases? If so which ones did they do.
Please dont give up fighting for a name to your illness.
It took me 12 years off living with a mis-diagnosis, which nearly cost me my life, to me finding out what i really had all along.
It can be destroying, and i know at times it gets that rough, you feel like giving up.
The problems i had also was getting doctors to listen, and try to believe me, hence me doing a lot on my own.
I was the one to question the mis-diagnosis, because of all the rashes i was getting, and then the hair loss , like you.
I was diagnosed with MS for 12 years, and only this year found out it wasnt.
Dont give up, remember knowledge is power.
If you want to post your symptoms and any labs, tests, or scan results, i will have a look through, and maybe i might be able to she a bit off light, or uide you on what to do next.
I hope ou are well,
Please keep me posted
Nicola
Thank You! Sure appreciate some direction. No Primary, since I told the last one, I all but died. I'm one of the Fentanyl Pain Patch Deaths last Summer, on top of these on-going Multi-Disease Symptoms. Unfortunately it didn't resolve all these horrific spells, it did however cost me the last 5 years, of getting no where on this Disease(s). Believe it's to late to reverse anything now. Was desperate to be able to present something that I can match to some of my labs. etc. Down to 112 not much left to loose now.
Your my only response, & possible answer. Thank You for your time.
hairtailed
Hi.
Usually the lumbar puncture shows up O-Bands in the cerebal spinal fluid in MS.
I was misdiagnosed with MS, in 1998. I then went on to suffer some very awful invisible symptoms, and some seeable symptoms.
My joints have been affected, and also the skin sensitivity, along with hairloss, which you have mentioned yourself.
My first thought is this could be one of many auto-immune diseases, and funny enough, they all have symptoms which overlap one another. In other words they mimic one another.
My first thought with you hairtailed was Lupus,
I would say you need a good rheumy, to run some antibody blood tests, for Lupus, RA, Sjorgens, Bechets, etc...
See if they come up with anything, i have just been diagnosed with APS, which is antiphospolipid syndrome, and this can cause MS symptoms.
Maybe you could both ask for testing for this, its a simple blood test to look for antibodies to anticardiolipin, and LA.
You can test positive on either.
Also for Sjorgens if the antibodies arent showing up yet, they can always do the lip biopsy, which may pick something up.
Good luck to you both, if you need any further help and i can assist just give me a shout.
Take care
Nicola
I read your response to alison, sounds just like me. Still MS symptoms persists. Do you know if a Lumber puncture can come back negative also? Newest symptom for me this month is what looks like Rhumatoid A. R. fingers, and at 74 degree I go into instant bone chills, and Heat related Auto/glass "triggered severity of all MS symptoms. Only after 4 progressivly worse summers can I now distinguish UV rays thru glass as being much worse than outdoor sun heat. just worse I guess this year Any ideas? Those are more specific than most, as is the hair loss.
Hi Nicola,
No, they have not done a lumbar puncture. This last neurologist thought maybe the muscle jerks were from my cervical spine and is forwarding that issue back to my neuro-surgeon but cervical spine issues would not explain muscle tenderness in so many places along with vision issues and some vertigo starting up..I am going to ask for an MRI with contrast when I see my spine dr soon, but that won't rule it out either since lesions can just be in the brain from what I have heard and I have not had a brain mri since 2002.
I will ask my neurologist over the phone this week if they would consider doing the lumbar puncture just to give me some peace of mind over MS.
Also, as far as those specific tests you mentioned, the rheumatologist ran some antibody tests last winter and they all came back ok(but he mentioned that sometimes with autoimmune tests, antibodies can take years to show up), he did mention sjogren's as a possibility for me even though that blood test was negative and he said fibromyalgia but it seemed worse than typical fibro and that does not explain some of my other sypmtoms either. As far as Sjogren's, I did not think it could explain myoclonic jerks or a "dead" arm on and off, or muscle tenderness all over....It would explain my dry eyes and joint pain though ..I also have what I call "bone pain", my pelvic bones and ribs really hurt if you even palpate them, even slightly most days). My physical therapist used to ask if I had a neuro-muscular issue..or soft tissue problem, I just want the drs to give me an answer, this will keep me from working full time until it can be treated. It is really starting to bother me that I don't know what it is and therefore, can't address it..
I will write down the tests you mentioned and ask my drs if these have ever been run(to my knowledge they have not)...
I really appreciate your help!! THANKS!!!
I'll keep you posted!
alsion
Hi Alison.
It sounds like you are having a bit of a bad time. Firstly i have heard of people having a normal MRI, and still have MS.
Have you had a lumbar puncture to check for the O-BANDS.?
This test is usually the best for MS.
Also your symptoms sound like they could be MS, but there are a good few other illnesses, which can mimic MS, and these should be ruled out also.
The main ones being Sjorgens, Anti-phospolipid Syndrome, Lupus. etc......
Have you had any antibody testing for ANA, ANTI-DNA, ANCA, LA, ANTICARDIOLIPIN,etc..........
A neurologist should do a full screening for MS, to rule it out, and that being a MRI, along with a lumbar puncture. To check the CSF for O-BANDS.
It sounds like this maybe an autoimmune problem, as you are having multiple symptoms.
I hope this as helped you, but if you need anymore help just give me a shout.
Good luck, and remember dont give up.
Nicola