New Diagnoses

 New Diagnosis

So, so many things have changed this year. For years, doctors just tell me it's Fibromyalgia, don't worry it won't kill ya. Seriously, last month a Rheumatologist in Dodgeville, Wisconsin told me to just exercise and eat better and I'll feel better. (Like in the last forty years of being sick no one has ever suggested that and I haven't tried twenty different diets.) Anyways, he went on to make my daughter and I watch a Pilates video. Needless to say, I won't be going back to him. As soon as he walked in the room, his first words were, "oh another Fibro patient." Without even examining me. He looked me over in about ten seconds, didn't look at the weird lump on my back I asked him to, like all the other doctors and just wrote down a list of things that cause fibro, like being female and having past trauma lol. Tell me, is there a person on this earth that doesn't have trauma?

The referral to this guy came from a pain management nurse that I was seeing that also says Fibro. Well, actually each time I go she says something different, first she said Covid vaccine injury, then the next time it was Fibro. Even thought she talked a lot about being "holistic" on her hospital page, she just kept trying to push meds on me, even though I told her I react to most meds, especially anything sedating.

I am the kind of person that wants to know WHY. Why do I have so much pain in my back? Why am I so shaky all the time? Why am I dizzy, have head pressure, feel invisible tremors in my legs and sometimes arms. Why do I react to meds so much? Or they simply don't work on me, such as Novacaine.

So, anyways, one of the referrals she sent me to was a neurologist in Darlington, Wisconsin. Now over the years I have been from doctor to doctor trying to get answers, and rarely get a real physical examination. It's usually them typing into a computer while you are talking, listen to your heart and than say "I have fibro or just say it's aging or whatever other easy to reach for diagnosis they think of."

This guy was great. He really examined me and did tests. Like actually neuro tests. I had a positive Hoffman test and had brisk reflexes on my left arm and no reflexes in my ankles, for example so he ordered a brain MRI.

Small Fiber Neuropathy

Unrelated to this neuro, but an ortho pa had also recently ordered an EMG test for me too which surprisingly to me came back normal, but because I could not feel the needles or shock in my feet, he thought I had small fiber neuropathy and said someone would hav eto order more tests for me including muscle biopsies. As of now, I haven't heard back from the orthoa pa and my neuro did not order it so I know I gotta bring that up again to doctors. 

There is really no follow up with doctors. You gotta be your own advocate, I realize this but it's so hard when you feel so sick, tired and scared. 

Orthostatic Tremor

Anyways, back to the neurologist. He diagnosed me with orthostatic tremor, which he said a lot of his patient with POTS get. He ordered a tilt table test but they called and the closest appt is several months away, in January so I have to wait for that. I guess that just verifies I have POTS which will validate his orthostatic tremor diagnosis.

Pituitary Tremor

Because of my neuro tests, he also ordered a brain MRI. He said between my reflexes being messed up, my upper body tremor and the white lesions in past MRIs he wants to rule out MS. Well, the results came back and I have a pituitary tumor. 

He has not called me about it but I have a follow up appt in October so I guess he's waiting for that. But shockingly my regular doctor called me an said she saw the results and she referred me to a neuro-endocrinologist. 

So, I sat here for three weeks waiting for them to call for an appt but they never did. So, a couple days ago I googled neuro-endos in Madison and found out they literally have  pituitary clinic there. So, I called them, and went over my symptoms and they gave me a fax number for my doctor to fax a new referral, so I messaged her and got that all lined up.

The MRI also showed I have some bulging discs in my neck but I already knew that from prior MRIs. 

Symptoms

In the meanwhile, my symptoms have gotten so bad. I still don't know what to do for my back. My doctor sent my MRI over to a neuro-surgeon in Madison but he had his receptionist call me and tell me he didn't think he could help surgically. I was so shocked, I have so many bulging discs, aortitis, several tumors on my spine called, hemangioblastomas and plus a couple lipomas along my spine and si joint. I have an annular tear, which shows up in every MRI I have ever had, and facet atrophy and some other stuff I'm not remembering now. Anyways, he said he couldn't help. Everyone just wants to drug me. I want to know what it is and fix it. 

My Back

I can barely walk anymore. I can't sit at all, I can't stand. I can walk about a couple hundred feet before I have bad pain in my back. But it's not just pain, it's a pulling and pressure sensation. I feel like my back muscles aren't' right, they feel weak and start to tighten up as soon as I'm standing. If I sit, I can't get back up and have to lay down the rest of the night in total pain and with this weird sensation that I get in my stomach that feels like my stomach muscles are being sucked into my spine. If anyone reading this has felt this sensation please comment below cuz doctors look at me like i'm crazy and I haven't really talked to anyone else who has this. 

SI Joint

So after I had an epidural done on my back to relieve my lower back pain, I noticed this weird lump over my right si joint. I never had pain there before but for some reason since I got the epidural, I do now. I asked every single doctor about it along with the pain management nurse who did the epidural and no one really seems to "hear me." My regular gp just said it's probably another lipoma like the other one I have on spine.

I noticed it about a week after getting my epidural. I don't know if it's because of getting an epidural or I just noticed it cuz I had pain there after my epidural, but it's been months now and it's still there and still hurts. I can't lift my right arm up i the air without feeling it pulling on that spot in my si joint, I assume that is referred pain from a nerve?

Subluxed Ribs

I also sublux my ribs all the time. I seem to do this a lot at night or when lifting my arm to do something like lift the dryer lid. Just all of a sudden it's sharp pain between my shoulder blades and a bit to the left. I do have bulging discs there too but my chiro, who is the only one  who helps with this, says its a subluxed rib. He is able to usually fix it right at the office visit. But then it just happens again in a couple weeks. So, I do monthly chiro visits trying to keep everything aligned. 

My Head

I don't know if this is related to the pituitary tumor or now. I just can't believe I am saying I have a brain tumor. It feels so weird! They are usually benign but seem to get treated pretty much the same way as cancer, with hormone treatment, radiation and surgery. 

But anyways, I have lots of neuro symptoms.

I have head pressure almost always but to different degrees depending on position, activity and the time of day.  I have dizziness, especially in the morning. But I always have to be careful of how I move my head, can't look up or to the right quickly. Dizziness is every day but only a couple times a year I have true vertigo. 

Sleep

So I have to bring up sleep here. I have this weird thing that happens when I fall asleep. First, it's super hard to fall asleep because I get restless legs/stomach. I get that awful strange sensation in my legs as well as my stomach. That antsy I gotta move or punch my legs or squeeze my stomach muscles so it will stop, but it still doesn't. Those that have this condition will know what I mean.

But anyways, as soon as I drift off, like the very second I do, I jerk awake with this awful awful awful tremor feeling in my body. Sometimes my jaw shakes so bad I cannot control it. I see black spots in front of my eyes or shadow like things moving in my vision. My heart is racing and I am breathing heavy. It's almost like I got shocked or had a completely panic attack just at the moment of falling asleep. I literally feel like I'm about to die when it happens. It's so awful. 

My Eyes

I had my first migraine with aura a couple days ago. It was at night and I was dozing off but couldn't totally fall asleep so I turned on the tv to watch and I saw this weird black and white shape that kinda looked like a zebra. I kept thinking I must of looked at a light then looked away but still seeing it. Then all of a sudden it grew into this c-shape like a crescent moon and it was full of black and white flashing lights that were moving in a circle. It lasted about twenty minutes then went away thank God. That was crazy. I feel for people who get these a lot. I have a friend who gets them several times a week, so I didn't panic cuz right away I knew that had to be what was happening, a migraine with aura. I didn't get a bad headache like some people do but about two days later I got a "pressure headache" that I have pretty much had ever since. A couple times I have gotten some flashing lights too but not to the extent of that first one.

I have had issues with my eyes for months now. Blurry, (for months)  seeing double (for years) and certain things like reading and being on the computer, which I am a lot make them water, become more blurry and just irritated overall. I have gone to the eye doctor and the ER about it because strangely my pets, my cat and two dogs are having eye troubles too so wasn't sure if we all have pink eye or something, but even after treatments with drops we all still have it months later. Weird. 

Ears

Tinnitus all the time. Sometimes it's ringing, sometimes it's a swooshing sound, usually it's the same sound as if I was holding a seashell to my ears.

My Legs

A buzzing, internal tremor, almost always in my legs, that gets worse with activity. A tremor in my arms and hands that comes and goes. Memory issues, sometimes brain fog. The worst is this feeling that I can't stand on my legs anymore. If I stand more than a couple minutes my legs start to tremor and the muscles twitch like they can't hold my weight. You can see the muscles and my legs jerking and tremoring. This is what the neuro thinks is orthostatic tremor since it happens when I'm standing but I get some relief, at least from the muscle twitching once I lay down.

My Stomach Pain

I don't know what is going on with my stomach. I have this continual pain under my right ribs. It's like a light bulb, it turns up and down throughout the day. It doesn't seem to be related to movement, and not really to eating either although a couple times I did notice it after eating, but I have noticed it when I didn't eat too. 

My dr ordered a urinalyses and a cat scan of my abdomen. It showed I have some kind of cysts in both kidneys but she didn't seem to be worried about that, didn't even bring it up to me. I have a kidney stone but it was in my left kidney, not my right and is small. So still don't know where the pain is coming from. The urine test showed blood and bacteria but you know for us women, they always say it's cuz we didn't wipe right. Don't know why they bother with the test. So still don't know why there was blood or this right sided pain.

There are some other things but I'm just exhausted from writing all this, so til I have some more results back, and I can update things, take care.