Update post 85: The heck is wrong with me

[lenapesadie]

I’ve got another two weeks before my appointment with a neurologist. In the meantime let’s play the internet diagnosis game. Excruciatingly long post.

My symptoms began @ 5.22.21. First symptom was knee pain in right leg. No noticeable swelling, heat or discoloration. Pain was of course the worst standing up from a chair and going up and down steps. Pain continued for several days and progressed to include a burning/tingling sensation down my shin. Saw my PCP a nurse practitioner at this point. Knee sore to palpitation. PCP ordered knee X-ray and Motrin. X ray clear. PCP ordered PT pending clear x ray.

Over the weekend the tingling / burning sensation intensified. Now pins and needles feeling and all the way up my leg from sole of foot to groin. I’m freaking out at this point. That Tuesday (day after Memorial Day) I go to ER. Ultrasound of leg, no indication of blood clot. X ray of lumbar area. Degradation of facets noted. ER gives me systemic dex shot in hip, suggests PPI for stomach / all that Motrin and sends me on my way. PT delayed due to worsening of my condition.

That Thurs I see PCP. She scripts prednisone and Robaxin. By this point lower back/hip pain is bothering me despite 800mg of Motrin 3x daily. Labs pulled. MRI of lumbar area ordered; MRI clear. 2nd Moderna shot.

Through next week the Pins n needles / burning / tingling now spreading to other parts of body, particularly left upper torso/neck/arm. Stabbing pains in sides and right ear. Hyper sensitivity all over. Clothes and sheets almost unbearable particularly when trying to sleep; unable to sleep more than 3/4 hours.

Go to immunologist. Mucho questions about COVID history (no known infection) and allergy history (no med reactions as an adult but did have anaphylactic shock post penicillin injection as a tiny kid) and COVID vaccine dates entered in chart. I had first Moderna shot week or two before onset of symptoms. Chest x ray clear. Immunologist requested to follow up post neurologist appointment.

Back to PCP same week as immunologist. More labs pulled. Ear infection diagnosed on right side by presence of redness and pain at palpitation. Drops and internal antibiotics scripted. Interestingly I’ve never once had an ear infection before. Previous labs showed slightly low vitamin d and folic acid. Vitamins obtained. X ray of hips ordered. More labs ordered. Trazodone scripted to help me sleep. No pain meds scripted.

Same day started PT. Post PT crippling pain in hip, upper front of thigh and lower back.

Lab reports come in. Inflammation markers from labs elevated in several areas. I can provide specifics if anyone asks. ANA and rheumatoid factor negative. Overall body pain and nerve pain (pins n needles / burning sensation) varies from still uncomfortable despite continuing Motrin to crippling pain (ie barely able to get out of bed).

Decided to change PCP to internal medicine specialist MD at another practice. At this point I’m also having shivers…like the feeling you get prior to having goosebumps pop up or when you’re cold. But I’m not cold or getting goosebumps, just random shivers. Also getting a twitchy, twinging sensation throughout my left leg (on the inside of leg mostly). I’ve been able to look at the offending leg as I’m feeling it and there is no visible twitching. All of my joints are popping; every time I move something pops. This dr scripts gabapentin, more muscle relaxers, advises to continue Motrin and requests follow up after neuro appointment.

I’m a little woozy feeling on the current medication regimen and I’m still having body pain and nerve pain. Though nerve pain seems muted enough that I’m not jumping up shaking my right leg and/or left arm out all the time. I’m unable to work. I’m not safe to drive more than 15 minutes or so. If I walk or sit upright for more than 15-20 mins symptoms increase in intensity. Standing about the same. Holding my arms up is similar, like I can’t hold a phone up to my ear for more than a few minutes; ditto to trying to type on a keyboard or hold a steering wheel. So I’m on a merry go round of different body positions trying to not be miserable. I am exhausted and mentally fried.

I’m still waiting on results of hip x rays. Hoping to have those today or tomorrow.

Thanks to anyone that made it through that novel. I’m very open to any speculations or experiences as I wait on the Nero appt.

[3PonyFarm]

I have heard of fibromyalgia sufferers having some of those symptoms. I hope it is nothing serious and you get answers and relief soon.

[lenapesadie]

Thank you. I’m not familiar with that condition. I’ll do some research!

[Jackie_Cochran]

This is NOT a diagnosis. I had SOME of the same symptoms, but in my left leg, before I finally got diagnosed with MS. It could be a number of diseases, mine just turned out to be MS when they finally did MRIs of my spine and brain.

My neurologists give me what I call the “soundness exam” (normal neurological office visit exam) and I joke that the neurologists are almost qualified to give a horse a pre-purchase exam because the neurologist is looking at for a lot of the same symptoms of unsoundness. I was never asked to trot though in the neurologist’s office hallway, but they want me to walk down it as they look closely for gait disfunctions. They also look deeply into my eyes trying to see my optic nerve because they are neurologists and this is the one nerve they can actually see. If your pupils are too tight (like mine) they may ask to contact your optician about the results of your eye exam. You may want to give a heads-up about this to your eye doctor.

Some of your symptoms MAY be from the prescription drugs you are taking. Make sure to bring a complete list of all prescriptions you are taking now, all supplements (herbs, vitamins, minerals, etc.) and it might be a good idea to do a list of the prescriptions you are no longer taking and for what reason.

I am glad you are getting to a neurologist so quickly. It took me 18 months of my left leg being numb with nighttime leg jerks before I shamed my GP doctor by telling him he might as well refer me to a chiropractor since his diagnosis of a pinched nerve that would resolve on its own, well it just went on getting worse as I started falling occasionally for no reason at all. He then referred me on to a spine specialist, this doctor’s PA examined me, told me it might be MS and finally I got referred to a neurologist.

I hope you are referred to a good neurologist. A neurologist is as dependent on the patient’s account of their symptoms as they are on the neurological in office “soundness” exam.

I’m jingling for you.

[lenapesadie]

Thank you!

Every time I see a new doctor I bring all my records including prescription history and my CD collection of images. And I have pics of my vitamins I’m taking (just the D and folic acid per blood work).

I didn’t wait around for a referral. I asked family friends in medical field for neuro reccs and called and got my appointment. If I have to self pay for the visit I will. I’m not playing this pinched nerve wait and see game like my first PCP wanted. Poop on that plan. Hmph.

If this neuro doesn’t cut it I have an in with a triple board certified head of stroke center in a major hospital neuro and will go there if need be.

I’m not mucking around. This mess is serious and I’ve gained a whole new level of sympathy for those living with chronic conditions. It’s miserable.

I look forward to getting a good soundness exam!

At this point I’m ready to book myself an appointment with my orthopedic vet

[Jackie_Cochran]

I DO NOT see why we humans cannot use large animal vets/specialists.

All humans are Great Apes. Any zoo primate specialist should be able to diagnose and treat us probably better than the usual PCP for a range of unusual health problems.

I have come to respect the neurology NURSES. Several times they gave me better advice (in general terms) than the neurologist herself.

Right now I respect nurses more than most doctors. I really hope your first neurologist is a good one!

[lenapesadie]

Thanks for the tip about nurses, I’ll keep an ear trained on them.

My immunologist was delighted with my choice of neurologist. Hoping that’s a good omen.

At least vet’s aren’t so stingy with basic meds. I can’t tell you how frustrated I was to be told “you are describing nerve pain” followed by “I’m not comfortable scripting you the known nerve pain medicine”. My vet would never do that. He’s gonna keep trying stuff until my animal is better or he runs out of options and sends me to the vet school. He for darn sure isn’t gonna say oh horse is fine even though he’s obviously lame keep him in full work!

[Jackie_Cochran]

I have another suggestion.

Get yourself a cane, not the ones with a curved top like a shepherds staff but with a handle that is flat/horizontal so you can LEAN on it. In fact if your pains/weakness/whatever wander from side to side get yourself two canes. I can almost walk normally with two canes. It also sends a subconscious signal to doctors and other people that what you have is SERIOUS.

I got diagnosed, the next day I got myself a cane. I should have gotten myself one months before.

[lenapesadie]

That’s a really good suggestion especially if I need to go to the grocery store (I’ve been utilizing delivery but I would prefer to select my own fresh foods). I’m so thankful I have my golf cart! I can putz around on that at home to check the mail and the horse water trough etc and just stop and go as needed most days. Some days my body is so tight I can’t tolerate the pain from the jostling. I’ve been in tears riding in the car to multiple appointments from pain. What a mess.

[Libby2563]

Ugh that sounds awful, I am sorry you’re going through this! I am going to ask a standard COTH question : has Lyme been considered? Random joint pain, burning/tingling/stabbing pain, pins and needles, hypersensitivity, muscle twitching, and low Vitamin D all ring major bells for me. (“Some days my body is so tight I can’t tolerate the pain from the jostling.” <-- very familiar!)

Unfortunately most doctors are not great at recognizing Lyme and are reluctant to prescribe antibiotics unless you have a recent tick bite complete with a bullseye (my husband just went through this with our primary care). I was undiagnosed for years and was repeatedly told that my crippling back pain was “just muscular” and I should take Advil and do PT. Three days on doxy and the pain went away 95%, hmm. It did require 6 more years of treatment with specialists to keep it gone though–I am happy to share some info on that if you want to PM me.

[lenapesadie]

Omg! I’ve not considered Lyme at all.

I did have a red, painfully itchy patch the size of my palm on my left calf that I thought was from a horse fly bite that was bothering me around the same time as all this mess started. It got to it’s peak color, itchiness about two weeks after my first Dr appointment about my knee. Both my original PCP and the immunologist saw it. It wasn’t the highly defined bullseye look I just saw via Google and I didn’t see any ticks, but we do have ticks here and I have been mucking about in our woods all winter.

Thank you for putting this on my radar.

I’m sad to hear you had issues getting a good diagnosis and a doxy script. Particularly when doxy is regularly scripted to folks traveling to places like Thailand as a precautionary measure. Seems to be a depressingly common theme regarding difficulty getting appropriate tests and meds.

I will speak with my (new) PCP and see about him ordering a lab for that. I’m guessing there is a blood/serum test like we have for critters?

I may PM you in the future with any particular questions. Thank you for offering to speak with me about this.

I swear if I was a horse or a dog this would be easier, hey Mr Vet what about Lyme? And boom tests done ASAP. Test negative but symptoms match, boom here’s some doxy. Try that, it won’t hurt. Ugh!!! Why is human medicine so difficult?!?!?

[frugalannie]

@lenapesadie, so sorry to read that you’re going through this. I’m going to second ruling out Lyme or another related tick borne disease, which often starts with knee pain and can be neurologic. Apparently there’s more than one type of test available for it. My friend was diagnosed with a brain tumor when she had neurologic Lyme because the most widely used test result was “equivocal”. When they finally sent her test to the reference lab (at the time it was at Stony Brook, NY) it was clearly positive. Because it was neurologic, Doxy was of limited help but there are other antibiotics which cross the blood/ brain barrier.

Have you had an MRI of the rest of your spine? And while I truly hope you don’t have it, there’s something called Recurrent Nerve Syndrome or RNS. My dear cousin has it. In her case, stimulation of any nerve reverberates around the entire nervous system, amplifying along the way. There was a time when even the feeling of a sheet on her in bed could trigger it. She has specifically mentioned the cramping and muscle pain. She’s had a very rough course these last 25 years or so, but finally had a device inserted that allows her to essentially interrupt the pain by triggering blocking impulses. (I’m not explaining it well at all.) You’d be at the every beginning of it if this is what you’ve got, and I’m quite sure therapies have improved. For her, she is happy with any relief and a daily swim and she has regained the ability to do the every day things we all treasure.

Kudos for you to be pushing hard for an answer, and getting the best neurologist you can. Not worth dealing with the docs who are adequate when it’s something like this. You need a superstar. Best of luck.

[Libby2563]

@lenapesadie

I did have a red, painfully itchy patch the size of my palm on my left calf that I thought was from a horse fly bite that was bothering me around the same time as all this mess started. It got to it’s peak color, itchiness about two weeks after my first Dr appointment about my knee. Both my original PCP and the immunologist saw it. It wasn’t the highly defined bullseye look I just saw via Google and I didn’t see any ticks, but we do have ticks here and I have been mucking about in our woods all winter.

That sounds very suspicious. As I mentioned, my husband recently had two tick bites and they were like that–red, itchy, painful–but no bullseye ever developed and that is not uncommon at all. His nearest lymph nodes to the bites also got swollen and super painful. We know for a fact they were tick bites because he pulled the ticks off of himself! And still the doctor was like, “Wellllllll, there’s no bullseye, so it can’t be Lyme…” It’s infuriating!

I really hope you can get some answers. If you look into things more and think it might be Lyme I would recommend seeking out an infectious disease specialist or Lyme-literate MD (LLMD). There is just so much under/mistreatment of Lyme and other tick-borne illnesses out there and if that’s what you have you don’t want to let it become chronic. I see Jemsek Specialty Clinic, which is in DC but does do remote consults and might be able to work with someone local to you, wherever you are. Specialists are often expensive and do not participate in insurance, unfortunately, though you should be able to submit for partial reimbursement. Best of luck and feel free to PM me at any time!

[lenapesadie]

Thank you so much for your kind words.

I have not had any MRI except the lumbar area and it was done without contrast. I’m hopeful that those types of diagnostics will be ordered by the neurologist. In PT we discovered that muscle stretches of my upper back and neck trigger sharp pains in my left arm and elbow, despite two chiro adjustments and massage therapy.

I know with my dog she had two negative tests but doxy cleared her symptoms (fevers mostly, this was post a para influenza infection). I will research and ask about the antibiotics that may be better suited for the neurological aspect. Good tip. Though I’m tempted to get my vet to script my horse doxy and give it to myself, mostly joking lol.

I will look into that disorder too. The sensitivity to very light stimulation very similar. I get flares of nerve pain if I hold myself in any position for too long. Like if I normally could sit with my legs crossed for 45 mins before I felt like I needed to move my legs before one went numb, now I might get the post numb pins and needles feeling after just a few minutes. I’ve had to shake out my arm like five times typing this post bc I’m laying in bed and my left arm is bent to hold my device and laying against the mattress. The collar of my shirt touching me was driving me absolutely insane before I got on the trazodone and gabapentin. And the sheet touching at night driving her nuts, yup that’s familiar. Ugh. I’m glad to hear she is doing well now. That is encouraging!

[lenapesadie]

I’m going to get on this ASAP. Thank you for sharing.

[islgrl]

My very first thought when I read this was tick borne illness. If not lyme something else. But I would start with lyme. If its negative I might press for further investigation of other tick borne disease.

[Alterration]

I don’t have anything helpful but to jingle!!!

[lenapesadie]

I’ll certainly be pressing for the tests and even if negative I’ll likely press for the antibiotics. This stone won’t be left unturned that’s for sure. I spent a year and a half checking my dog into ICU for the lack of trying doxy on her after testing negative for tick diseases. I was ready to put her down. One round of doxy cleared her right up.

[lenapesadie]

Jingles are much appreciated!

[avjudge]

@lenapesadie

I did have a red, painfully itchy patch the size of my palm on my left calf that I thought was from a horse fly bite that was bothering me around the same time as all this mess started. . .

I just wanted to add that I get incredibly itchy spots that last for a week or two whenever ticks bite me - even if they’ve only just barely latched on and I pull them right off. It’s an allergic reaction like that to a mosquito bite, I assume to the anticoagulants they inject. Around home (for now, anyway) it’s dog ticks, but when I lived in CT I got a few deer tick bites. The two I remember were actually the babies, way smaller than nymphs (and thank goodness unlikely to be infected with Lyme), and I was scratching for a day or two before I looked closely enough to see the near-microscopic dots at the center of the itchy spots.

So your itchy patch sounds to me like a strong indication of a possible tick bite.