Hi all !

[Salem518]

Hi All !
I'm new here. 44 yr old male, oncology RN. I apologize in adavance for the "not right" format, I am having big cognitive issues.

In May 15 my legs "couldn't keep up" to me while jogging, fell and fractured and displaced a few ribs. Apparently my 44 obese body does;t bounce like it used to . I've felt not right for a long time.

In August I was in the ER, diagnosed with lyme disease. Severe headache, photosensitivity, eye pain/pres, sure, fatigue, fever, blurry vision one eye. Doxycycline X 17 days.

9/9 mentally slow, tinnitus, head ache, low back ache/tight, fatigue, both eyes blurry like under water. Restart Doxy

9/22 fatigue (it is all present, I won't repeat it as symtom), wobbly legs, left ankle tight, left arm/hand/ feels like hitting funny bone frequently, forgot how to parallel park my car at work, tripped at work, drop things, can't do math calculations at work, feel like cut in half at waist and legs are not in line with my torso( hard to explain but its like I'm walking beside my legs) very hard to walk, lost sense of taste and smell X 48 hours (weird)

Infectious disease consult. PICC line inserted. IV Roephin X 42 days. this was fun, driving an hour each way for a 45 minute treatment.

10/13
weakness, wobbly, left arm neuropathy, vision bad (much worse when I am overheated at work) low back and butt weak/tired/crampy (I was a dairy farmer previously and have done a fair share of manual labor.

My back feels like I have shoveled a large amount of sawdust for bedding, at the end of that my back was like it is now--- DOES THIS SOUND LIKE SPASTICITY??

CT SCAN head - no acute process identified ( I expect CT clean)

11/16
Headache, eye pain, vision blurry, back pain etc, arm neuropathy, confusion, cognitive issues, just feel bad

ID doctor ordered oral ceftin for 30 days


ACTUALLY WORKD FULL HOURS 11/29 to 12/9 first time since August !!!

started feeling bad again
vision bad, get hot and sweaty easy ( I've always been affectionately know as "sweaty beast" under my chemo gown at work, but now it is a thing to see how far down my sweat stains go on my scrubs) forgetful, tinnitus, wobbly

12/16 lumbar puncture
I asked my primary to order routine CSF labs and also anything associated with ms (I was hoping for a one needle in the back and done thing) but of course he only orders labs with lyme because "a neurologist would want an mri before a lumbar puncture" (maybe but ****? add on the labs doctor!)

CSF lyme iGM negative no bands
CSF IgG negative no bands

CSF IBL negative
CSF PCR lyme negative


BLOOD results from same day
lyme IgM positive bands 41,23 kDa
lyme IgG negative bands 41,39,23 kDa
C6 peptide 2.14


OK, so that's me ! Thanks for reading. I have been out of work (AGAIN) since 12/22. I am currently having the all present fatigue, wobbly feeling, weak feeling legs, easy to stub my feet, can't think of right words to say, can't do math, left arm neuropathy , vision is blurry ( it varies but is never good), my low back/top of butt feel so tired/knotted/uncomfortable, tinnitis that varies, memory is shot (kids love making fun of me). It is humbling to go from family provider to out of work. It also sucks to used to be always in the front of the pack, walking briskly and now I am nagging the group to slow down and rest because I can't move fast.

I have referral to neurologist at a regional medical center TOMORROW ! I hope to get some solid answers as to why I feel the way I do. Primary has been pushing neurological lyme disease saying that it can take two years to recover.

Having no lyme present in CSF questions that theory in my mind ? ----- THOUGHTS ??

I felt better after IV therapy in a different way . Still felt "not right" but a different sort of not right than I had. Hard to explain. Sitting here over the last months and looking at my symptoms and course I wonder if the Lyme was knocked out and now MS (or something ) was kicking in ???

----THOUGHTS please


Thanks for reading.
Regards

Darr

[Mamabug]

Thanks for posting and introducing yourself.

I would only say that lots of symptoms could be MS, or they could be mimicking MS. And, that MS can take, for some, a very long time to diagnose because it's often a case of needing to rule out many other illnesses first, as there is no definitive test for it. That's just the way MS goes.

Hopefully, your doctors will figure things out and, hopefully, it won't take too long.

[hunterd]

HELLO SALEM (DARR), WELCOME TO MS WORLD! We are very happy to have you, and that you found us. But we are also very sad why. Like already has been said, there are many symptoms that could be long to other things. Only a doctor familiar with you and your history can properly examine and diagnose you. And as I am sure that you already know, Dr. Google is not your friend.
I wish you the best of luck.

[Salem518]

thanks

Mamabug and hunter
thanks for the welcome. I look forward to learning more tomorrow from the neuro. This board has already been an asset as I have been cooped up at home and surfing the web. I know not to diagnose from www but it sure is comforting in a way to read about other folks in a similar situation.
Onward
Darr

[Salem518]

update

Back from the neuro. In a way it was a relief to be told that I really did have something going on. During his exam I had hyper relfexia, clonus and tremors. He ordered MRI with galladam or whatever for the brain and without for spine. Followup after scans. I am supposed to increase vit D to 5000 units until I see him.
Darr

[Mamabug]

Thanks for the update. Please keep us posted.

[Salem518]

checking in

Hi all
I went for MRIs yesterday. I was only able to hack 45 minutes in the machine

I am a big guy (270 #, 6 ft) so it wasn't overly comfortable in the machine, but that isn't what bothered me. I am so hyper sensitive to noise right now. I have very heightened startle reflex.

I made it through the head without contrast. When they started the spine I had to push my "escape button". The noise changed tones and became a high pitched squeal that felt like it was killing me.

I felt like I was going to seize because the noise was agitating me. I think I had sensory overload. My legs were starting to twitch and jerk. The high pitched noise was just too painful for my system, the clangs and bangs were ok.

Calling neuro today. Maybe they have enough with just the brain without contrast to get me diagnosed ? Maybe I need some drugs to soothe me during the MRI?

Question ---- FOR ANYONE WITH NOISE SENSITIVITY ---
If I get some xanax/ valium/ whatever from the doctor will that calm my heightened senstivity to noise ?

I feel like a failure At work, lots of my patients undergo MRIs with no problems. I needed these MRIs to help figure out what is going on with me, I'ven waited to get them done for weeks, and finally the day arrives and I can't tolerate them. What a downer.

Oh well. Onwards !

Darr

[SNOOPY]

Hello Salem518,

Usually when having a MRI ear plugs are recommended and provided and many MRI facilities offer music which will also drown out the noise of the machine.

If I get some xanax/ valium/ whatever from the doctor will that calm my heightened senstivity to noise ?

Benzodiazepines can help calm a person when in the MRI. Many people become claustrophobic. As far as noise sensitivity, I don't know, I have never had a problem with MRIs.

[Mamabug]

Thanks for the update.

I don't have either claustrophobia, or sensitivity to noise, so MRI's don't bother me. However, I do use music to stave off the boredom. I have heard of some who take a sedative and find it helpful.

[JerryD]

Hi Salem,
It is very likely you have MS ! I am sorry to read your story, because MS sucks! I expect you know the story of having chronic illness and the 'fun' that it entails since you are an RN. It surprised me to read that you were advised to begin 5000i.u.'s vitamin D daily. I didn't see your levels posted. Don't you think a blood test is the appropriate starting point ?
Many times vitamin D levels are severely deficient in people with MS. Mine was very low for 2 years ! I corrected that with a lot of OTC vitamin D capsules ! And why did you go for a lumbar puncture when the standard thing, now in the 21st century, is a series of MRI's? I had several MRI's one of which was gadolinium enhanced . I am sorry that you have a problem with the 'closed' MRI. Good luck in your search for answers.

[Salem518]

JerryD
Thanks for the input. RE: vit D- I do agree that a blood test would be the appropriate starting point ! It was,my primary care doc has been monitoring it. I went from 11 to 14 after starting VitD3 2000 units daily. First consult with neurologist he recommended increasing to 5000 units.

RE: lumbar vs MRI - at the time the primary doctor and infectious disease doctor were investigating if Lyme was present in the CSF and if so at what levels compared to my blood levels. I asked to have the CSF tested for protein and bands that could indicate MS, but the MD did not order that so I don't have that data.

Regards
Darr

[hunterd]

I am extremely sensitive to noise, but now that you mention it I have no problems when I get an MRI! I have no idea why this is.

[KateA2]

Hi Salem,

Sorry to hear you've had such a crappy past 6+ months! I hope you get some answers soon, can begin proper treatment for what's going on.

I didn't know I could not tolerate an MRI until I had a full brain/cervical/spine in one session. I panicked 2x, but somehow made it through (so soaked in sweat it was like I jumped in a pool...yuk). Now I pre-medicate with Ativan, and no problems at all during MRI. So get some meds, no need to be ashamed.

I am very noise-sensitive, certain sounds will make my muscles seize up and it's really painful. But MRI noise doesn't bother me: I count the whirs, buzzes, ticks/tocks and usually fall asleep.

[Salem518]

I made it !

I made it through the rest of the MRIs yesterday !

I had valium on board from the doctor and made sure that the ear plugs were firmly placed.

Thanks to all for the words of encouragement and advice.

Now to wait to see the neurologist Thursday for the verdict.

Darr

[Mamabug]

Glad that going through the MRI was OK. We'll look forward to hearing the results.