Hi. This isn't going to be short-but I'll try to make it shorter. lol
Let me start off by telling you that I am 41 years old and I have, and have been DXd with-Lupus(SLE), Fibro, OA, Raynauds, Sjogrens, APS, MP, (Meralgia Paresthecia), Corneal Erosion Syndrome (thanks to the Sjogrens), High Blood Pressure, SVT (Superventricuar Tachycardia)-which was ablated in April 06, GERD, IBS, Tinnitus and most recently-CFS/ME.
I have horrible insomnia that keep me up till 3, 4 am-DESPITE the fact that I am always so very exhausted! I can't seem to sleep at night!
Like the rest wasn't enough!
I currently take:
Plaquenil-200 mgs 2xs a day
Elavil-50 mgs 1 x a day
Elavil-25 mgs 1x a day
Cardizem-240 mgs 1 x a day
Prevacid-1 x a day
Xanax-.025 mgs 1-3 x's a day
Ultracet-1-3 xs a day for pain
81 mg aspirin-1 x a day to thin blood due to APS
Lyrica-100 mgs in am-200 mgs at bedtime(slowly increasing per doc's orders)
Provigil-starting at 100 mgs 2 xs a day
Lexapro-10 mgs 1 x a day in AM
Was on yet another NSAID, but doc stopped it due to making my GERD much worse.
Recent tests I had were, MRI of brain which showed small white matter lesions that doc said are non-specific, Cervical C-spine to rule out MS lesions-was neg, Neuro-Cog testing, which showed Metacognitive Dysfunction and a Brain SPECT which shows areas of Gray Matter not functioning in my frontal lobe and on the left side.
I am in no way new to pain, but lately, its so much worse. I can pinpoint the exact time this all started getting worse-it began in Feb of this year-we went on a short trip to Lancaster, PA, which is my fav place in the world to go-I love it there so much and always relax while there-but that time-on the trip there I started to feel sick, like a cold coming on. By that night, it was flu-like symptoms and I was so terribly sick, it ruined my 2 day trip. Came home, still sick, began getting dizziness(much worse than the norm I always deal w/from Lupus) and off-balance/unsteadiness and ringing in my right ear-fullness in my right ear/head(but not like fullness from a cold), couldn't think straight, couldn't talk right, was dealing with the worst fatigue ever-and I have a lot what w/Lupus and Fibro!-very forgetful/doing stupid things, saying stupid things, etc...
I also began trembles/shaking of my hands and in my legs when I stand too long in one place or am doing too much, like when cleaning.
I have 'gait' problems too. And I tend to fall towards the left when I am told to walk heel to toe with my eyes closed and also when stading in one place w/eyes closed.
I have had lots of cog probs, pain, etc, but not like this-it was like everything was so much worse!!! I couldn't function.
Wound up in hospital for 3 days due to it all in April. They found no cause and blamed it on the Fibro-since recent bloodwork for Lupus showed no activity.
Went home-still feleing the same-saw Rheumy the next week who blew a gasket when she heard about it all-esp that they were saying it was the Fibro!!! AS well as that my old neuro then, never even called her while I was in the hospital! She called the neuro then and there and gave a piece of her mind. lol Needless to say, I found a new neuro after that. Rheumy suspected I had MS due to my symptoms, ie: the MRI that had showed the brain lesions, having L'Hermittes sign-usually seen mostly IN MS patients, all the symptoms of numbness, pins and needles, cog probs, balance probs, etc.
So went to new neuro who ordered the C-Spine mri, the neuro-cog eval and the SPECT scan. He did verify that I do have L'Hermittes as well.
Saw neuro again 3 weeks ago and Rheumy right before that-Oh and Rheumy ran more blood too, this time including bloodwork for Epstein Barr. Haven't heard back on that yet.
After the results from the tests neuro ordered, he was pretty much able to rule out CNS Lupus(Lupus of the Brain-which was our biggest fear!!!) and he doesn't think its MS, but said the results are indictitive of ME/CFS.
So, he started me on the Lyrica, Lexapro and Provigil.
No real improvement yet, but its only been a few weeks on lower doses to start out.
Oh and as far as the ear probs/balance issues, etc...I had seen an ENT who had many tests done and ruled out things like an acoustic neuroma and vertigo, to name a couple.
I am just so tired of all this. I have NO energy at all! Brushing my hair, folding laundry, doing dishes...even typing THIS, all wear me out!! I have numbess and pins and needles and 'cold spots' all over, electrical shock-like jolts, sudden stabs of awful pain in my head, face, left ear area, cog issues are terrible, pain is everywhere and ever-present. I haven't had a single day without pain in over 25 years! The tinnitus has become worse and even happens on and off in the left ear now too! Balance is the same. I have such weakness and heavyness in my limbs-esp the left side!! My left arm is really bad sometimes. I still have the trembling of my hands and legs. I'm just miserable and so tired of it all sometimes. I'm 41 and feel more like 91!!
Anyways...I've done lots of research and keep seeing the same SPECT scan results that I have, in stuff about ME/CFS!! So much of what I experience, is in line with ME/CFS, as well as the Fibro, Lupus, etc. So its always hard to tell what disease is causing what pains! lol
Yet, I haven't found info about the L'Hermitte's in people with ME/CFS! Its a very strong indicator of MS as well as in people w/buldging disc in the neck area-but the C-Spine ruled out and disc probs! Much of what I'm going through are definate symptoms of MS...yet, some of them are definate for ME/CFS. I'm just so confused. Neuro had mentioned a Lumbar Puncture earlier on, but then at last visit said he doens't see the need to do it now and is saying its ME/CFS. But a Lumbar puncture would show O-bands if its MS and would show postive results if its ME/CFS(I forget what it is that's found in spinal fluid of people with ME/CFS)
With all I have and deal with, I just need to be sure WHICH it is DEFINATELY!!
I still feel like I am in DX Limbo, despite him saying he's pretty sure its ME/CFS. 'Pretty sure' isn't DEFINATELY, and I worry that if he's wrong and it is MS as Rheumy really thought it was-that I'm not getting the right treatments and things will get worse.
I'm wondering how many here have been through anything similar and aslo, if anyone expereinces L'Hermittes sign??? Basically, L'hermittes is: an electric shock-like sensation which radiates down the back and into the legs when moving the head or neck. In my case, it happens whenever I yawn, breathe in deeply, sneeze, cough, etc and shoots down my arms and legs...which neuro said WAS L'hermittes, just an odder form.
Its just all confusing and so frustrating and has my stress even worse because of it all-which doesn't help either! esp. with my stress and worry over my youngest son who is at Ft. Benning GA. at ARMY Basic Training for Infantry since late July (Graduates Nov 9'th and I cna't wait!!! lol)and who will be deployed God-knows where in the near future!
As well as my middle son, who is joining the NAVY this coming Jan to be a Corpsman(medic) for the Marines! Which means front lines too most likely!
Rheumy thinks its all too much stress and sure isn't helping any. And while its easy for others to say to not worry or stress over it all-but when its your children, its not that easy!
I just so want to feel good, even a little good for one single day and I so want clear answers. My case isn't a run of the mill, straight-forward case due to all the diseases/syndromes I already have. it makes it all so much harder to figure out and deal with!
Thans for listening to me ramble on here.