Hello to all. Help much appreciated! Desperate.

[awakinggiant]

Okay, I'm going to try to explain this in hopes of someone will be able to offer some insight. 3 years ago I began getting chest pain/cramps and an overall since of illness rangeing from headaches to fatigue. I'll skip over alot and start with last August I noticed alot of heat insensativty and this pain cramping in my rib cage while on vacation. I saw a Dr and he did a FVC and said I had the lung power of a 50 year old (BTW I'm 30). Well I generally just fight through stuff tho I did see a infectious disease Dr for a while because of mold exposure (slept on a molded matress). Well, as of last month it started with back tightness/cramping which fluctuated around causing kidney concern then weeks later started in my neck, making my neck so tight all I could do was stretch it for minor relief. This eventually lead to a massive headache from base of skull to temple, like muscle cramping on head. Has anyone heard of that? Headache is still TORTURING! I have been expieriencing tinglings/sensatons in the head for yeas but only minor pain for one month a year ago. All along I have ben an active, health conscience as far as diet. I have now been out of work for two months with serious head tightness which only ice would help (24/7 mind you) and the right rib cramping has moved all over ribs from front to back on each side. The fatigue is extreme and there are times when all I can do is lay there with shallow breathing, becoming more frequent. Now my voice seems to be cracking and I feel slower. Atrophy has set in but I've been laying here for a month and a half with ice on my head! Two weeks ago fasiculations started all over, literally head to toe though are not as extreme now as beginning. I now have random face pain and torturous burning sensation over body not to mention general confusion and vision problems (flashing lights, shadows). It makes me think back to all these years and I remember times where flooding of emotion (need to cry) would come on, sphyincter looseness (which would feel like I'm about to go in pants though never did), sensations of tingling, and irrational thinking woudl take place (which is now worse). I've seen Neuros, Infectious Disease, etc. with no help, just draining what energy I have (and money!).
My obvious concern is ALS, but what else could it be?
Lumbar Puncture 105 protein
Lumbar puncture (3weeks later) 87 protein
EMG Conclusion: 1.mild left sural neuropathy 2.nonfocal increased insertional activity in right leg. This may be secondary to a mild or early neuropathic process or increased nerve excitability.
CT Brain: Hypodense lesion in the inferior aspect of the right basal ganglia is most likely prominent perivacular space.
CT Sinus: Bilateral compromised ostiomeatal units. Rightward Nasal Spetum Deviation and Rhinitus w/ bilateral compromised nasal pasageways.
FVC(Aug07): Mild Obstruction FVC(103) FEV1(85)FEV1%(83) FEF25-75(L/S)57PEF(L/S)68
MRI Brain:Three Lesion in non specific hemispheric locations. MS or Lupus cannot be excluded.
Servical MRI: bulge oveserved
I can't get any diagnosed so maybe someone else has some much appreciated input!?
PS anything not listed I believe has been tested for including occ bands in CSF but open for suggestions...

 

[awieleba]

Hi awakingiant,

It doesn't really sound like als. It does sound like MS with those brian lesions. But what would I know.
You should investigate the brian. This reminds me of "mystery diangnois" I saw on disc. health. This lady had ALOT of your symptoms. She had a thing/lesion on her spinal cord or brain. they fixed it with surgery.
Have you had mri's on your spine? has your neuro indicated what he thinks? MS? I hope you get to the bottom of this.......

take care,

april

 

[awakinggiant]

A mystery illness alright...

Thanks for the reply. Funny u mentioned the lower spine b/c I was wondering why they (neuro "specialists") MRI the neck but stopped there. I even had a shooting pain there that made my legs jump out straiht from a fetus position. Then again why would that create cramping in ribs, neck, and head? This excrutiating pain certainly gave me a new outlook on life. I just hope I can get some answers and walk that out.
-kris
ps I thought ms too but no ogg bands found in the csf...