If it isnt MS what else could it be?

[Aussie1976]

Hi everyone - sorry for long msg.

About 7 months ago i came down with what i thought was a cold which included extreme fatigue for about 3 days.   About a week later i went to the dr as i was experiencing pain behind my left eye and tingling down my face.  This had happened about 6mths earlier.  He said it was migraine related.  I then began having difficulty walking with my right foot turning in and hip pain.  Generalised muscle pain in legs and arms followed. Since then i have experienced the following -
Painful muscles has settled into right hand side mostly on arm shoulder hamstring hip and calf.
Get strong cramps in toes and calf
Trouble walking at times and have fallen over once cos my legs didnt want to move.
Cant have hot baths as i get extremely fatigued dizzy and legs feel like lead.
If i over exert myself (which doesnt take much these days) my calves burn and my legs feel like lead.
Toes feel numb at times.
Had tingling and pin pricks in my fingers initially but this has settled.
Have been to the hospital twice with separate episodes of sustained muscle contractions that i need medication to stop.
Cant drive for more than two hours or i cramp up in hamstring and calf and feet go numb.
Right leg goes through periods of stiffness where i can't bend knee to knee just giving out and i almost fall over.
Regular pain/ tingling in lhs face near where jaw bones meet.
Episodes of extreme chest/rib pain where it hurts to breath and it feels like i am being squeezed sometimes for hours

I have had a brain mri and cervical spine mri but no lesions.  Showed i have 3 bulging discs but not bad enough to be causing symptoms. Had lots of blood tests and nothing except for a test that shows i could be having an autoimmune reaction but dr doesnt think this means anything as it is isolated.  

Neuro says he has no idea what it is and i don't see him again for another 3 months.   Seeing the physio due to my balance and walking issues.   She says i have significant muscle wastage on rhs and i have a lot less flexibility on rhs.  She thinks it is ms.

If anyone has any suggestions as to what i should do next i would be very grateful. The neuro put me on steroids for 3 months which helped but once i started dropping down the symptoms returned (milder than they were).  Have also tried valium for 2 wks which worked great and physio couldn't believe the change in me but neuro says i cant stay on it.

Thanks for your help.

[Aussie1976]

Thank you to everyone who had responded to my message-i dont have anyone to talk to about the emotiinal toll this is having so it has helped to unload on here.
I cant imagine going through this for 5yrs without any answers, but am coming to accept that this is me now and even if they don't have a name for it i have to learn to live with it.  I guess in this day of modern medicine you don't expect for the doctors to not know what is going on, or that there is no magic pill.
Living in australia it is hard to find ms specialists without going through the hospital system which has a ridiculous waiting list.  I have considered a second opinion but then wonder if there is any point.
Thanks again everyone -it is much appreciated.

[Kim610]

I completely understand how frustrating it is when doctors just write you off because they don't know. Negative tests don't mean you're making it up, they mean you have to keep looking! someone suggested that I get a second opinion from a doctor who specializes in ms.  I don't know if I will, but I think you should because you symptoms are so troublesome. I wish I had gotten a spinal tap just to be sure. My worst symptom now if the muscle stiffness and cramping. I can't figure out what else could be causing this, but limping around without any idea why is getting old! Yours sounds worse than mine. :( The gabapentin hasn't done much for the paresthesia yet, but it's a low dose.

[Ktaurus510]

Hi Aussie1976

I have almost the EXACT same symptoms, with the EXACT MRI findings. However, I did have a brain and all spinal portions MRI'd. Once all of those, except the cervical discs bugling, came back normal, my neuro did a lumbar puncture for pressure headaches and the other symptoms. The LP showed some abnormal findings, as well as inceased cranial pressure (235 mm---normal is 100-200 mm. They drained off some to bring it down to 125 mm, and sent it to the lab) . Although I discovered these things upon getting my medical records, the dr. said everything was fine, but yet and still referred me to the Mayo or Cleveland Clinic. Maybe you should ask for a lumbar puncture. I hope you (and I) find some answers SOON because these symptoms are not only an annoying discomfort, but also becoming a hindrance  

[Dagun]

Hi Aussie,

I´m sorry what you are going through, I know how difficult it is to not know what is going on. I´m pretty used to it now though, because it has been 5 years for me without answers. Has your neuro checked if you have any of the MS-like diseases, like Sjögrens, Lupus and many more. If you have a positive ANA or any of the autoimmune test, then Sjögrens and Lupus should be tested. Many people have Nerve related Sjögrens for many years without feeling the sicca symptoms. There is so much they are still finding out regarding how much the syndromes act like MS. I hope they will figure this out for you.

Best regards,
Dagun  

[Aussie1976]

Hi kim610

Thank you so much for responding.

It is funny how the dr places so much emphasis on an mri when it is obvious there is something wrong.  It is almost like he has given up or thinks i am faking (which i question myself all the time).  I just never imagined getting sick for so long or the effects it would have (i am lucky i have an understanding workplace that has let me drop down to 4 days per week).  The fatigue is the most difficult thing at the moment, although my first instance of fecal incontinence threw me for a 6 and i havent told anyone about it (not even my partner).

I hope things get sorted for you soon too.  I would be interested to hear how you go on the gabapentin and if it helps at all.  Thanks again.

[Kim610]

I am sorry for what you are going through. It's hard to not know what is going on or what to do next.  I am in a similar position, in that I have symptoms that could be caused by ms, but my MRI was normal and I also have three bulging disks! All tests normal, expect for hyperreflexia and slight indication of inflammation in blood.  I have mostly numbness and tingling, muscle tightness and fatigue.  I started taking gabapentin, but won't go back for six months.  I really hope you get some answers.