Exaggerated response to noise and pain

[MusicMom]

Happy New Years to everyone here!

I have 2 things I would like to ask about. (as background, I am not yet diagnosed, but the neuro says probable RRMS)

1).Beginning in summer 2009, during which time I was experiencing odd eye symptoms (flashing lights when moving my eyes) tingling/numbness and mild motor symptoms, I asked my doctor about a new issue which was becoming a huge bother...any sudden noise would cause an intense reaction...like a jolt of electricity going up my spine. Sort of the same sensation you'd get if someone jumped out of a dark closet and yelled BOO! It wasn't as noticeable during the day, but at night, it was terrible. The slightest noise, like my husband turning on the bathroom faucet, or someone slamming a car door, would make me feel "electrical" for about 10 seconds. Then the feeling would pass until the next noise. My family doctor had no explanation.

This whole issue disappeared when the eye/sensory/motor symptoms went away, only to reappear each time I'd have what I think is a flare-up. It didn't seem to be connected to increased caffeine intake, or stress, or anythign else that would key me up. The symptom returned again this month, during the time I was having worsening of my symptoms.

So I would like to know, could this be related? And is this something someone would find with MS?

2).My second question, is "Can MS cause increased sensitivity to pain?" I am asking because tonight, while my husband and I were tidying up the kids toys before bed, he walked past me, holding a narrow aluminum tube that is part of one of my daughters dolly high-chairs, and he gave me a playful whack on the upper arm. The pain was instant, and intense, and I screamed. It felt like I had been stabbed with a hot poker. I screamed so much that my husband had to look at the stick to make sure there wasn't anything on it. The pain was like fire and took a good 2 minutes to dissipate, after which time, the whole inside portion of my upper and lower arm, and 4th and 5th fingers felt like they were burning. I've never experienced something like this, it was very frightening.

Thank you for reading!

[jumpinjiminy]

Wow. That is frightening, and uncomfortable. The only extreme sensitivity I've had is to sound and smells. I've always had a sensitive nervous system, but I can smell things nobody else can detect - always the first to smell a gas leak - and normal odors knock me out.

The sound sensitivity I had with a headache, once, and thankfully, it never returned. I couldn't even bear to hear my son play with his toys, or husband and son talking in normal volumes. It made this intense buzzing inside my head that was nauseating.

I am a limbolander myself, they do not know what caused my problems. We are still looking, and right now all signs are pointing to autoimmune something, which includes thyroid, and may be all thyroid.

[sjpaddock]

Music Mom

I have experienced both of what you asked about with my MS over the years. As you begin to notice new symptoms, it can be hard to keep track so I would suggest you keep a small notebook in each room and write down anything new or old that re-appears.

I have one in my purse, one in my bedroom, one in my bathroom, the kitchen, and the tv room. Then before I go to my doctor I gather each notebook and put all of the new items in one notebook. Then I can discuss these issues with my doctor. Now, there have been many appointments when I have nothing to report which is always a good thing.

This is your body and it is very important that you become your own advocate.

[MusicMom]

Thank you both for replying.

That's a great idea about the notebooks. I've just been jotting things down on a scrap of paper, which is now so filled up I can barely read my writing! I have some notebooks in my desk, I'll get them out later tonight.

Jumpinjiminy, did your blood tests show autoimmune issues? Mine all came back fine (CRP, ESR, Rh-factor, etc), and I had them done during a few different flare ups. I have hypothryoid, which was autoimmune mediated, and i have pernicious anemia, which is also autoimmune. But never anything on blood tests. In my late teens i was diagnosed with some form of atypical rheumatoid arthritis, and my doctor had me see a rheumatologist every 6 months for years. I haven't had any joint problems for a long time. Just all these neurological ones!

[heliotrope]

I don't know if anyone's told you, but the form of anemia you have can mimic MS... so it may not be possible to tell what's what.
And yes, I have sound sensitivity during flares. Pans banging can send me through the roof...

[MusicMom]

Thank you. My B12 levels are in the normal range, I get monthly shots, and occaisionally twice monthy. Before the anemia was diagnosed, I had insane headaches, but no peripheral neuropathy or anything. i thought when I first saw the neuro that he'd say it had to do with my anemia, but he said no.

[heliotrope]

it's good they've ruled that out. It can be a stumbling block to diagnosis (especially the demylination it can cause).
As far as the sound sensitivity goes, I haven't found much that works... Besides telling family members to wait to do dishes until I'm out of the room. At least it does go away!

[jumpinjiminy]

Thank you both for replying.

That's a great idea about the notebooks. I've just been jotting things down on a scrap of paper, which is now so filled up I can barely read my writing! I have some notebooks in my desk, I'll get them out later tonight.

Jumpinjiminy, did your blood tests show autoimmune issues? Mine all came back fine (CRP, ESR, Rh-factor, etc), and I had them done during a few different flare ups. I have hypothryoid, which was autoimmune mediated, and i have pernicious anemia, which is also autoimmune. But never anything on blood tests. In my late teens i was diagnosed with some form of atypical rheumatoid arthritis, and my doctor had me see a rheumatologist every 6 months for years. I haven't had any joint problems for a long time. Just all these neurological ones!

My blood tests did not show autoimmune except for two things. One was a low C3 level, and the other was a TPO antibody which fixes complement. So I also have the autoimmune thyroiditis - Hashimoto's - which can also cause encephalopathy. This is what my neuro suspects might be the problem.

Have you had an EEG? Mine was normal, as was the MRI. I'm still waiting on the spinal tap results. He won't refer me to the neuro-immunologist until he gets more data to indicate the HE diagnosis.

[jumpinjiminy]

I forgot to mention that I've also had a couple of attacks of arthritis - only two or three in my whole lifetime, but one was this fall after the big flare up was dying down and fading away.

Do you have interstitial cystitis too?

All of these little autoimmune things I've been collecting over the years makes my GP think this is more systemic than CNS mediated. Here is the list - raynaud's, costochondritis, sacroileitus, interstitial cystitis, arthritis, thyroiditis, I'm guessing but am pretty sure I now have optic neuritis, and then the CNS stuff. Most of this stuff I wasn't even aware was autoimmune or related to what's happening until the last few months. What a shocker to find out all of these little things that have accumulated over time might all be related.

The spinal tap will give the answer to that question, hopefully.

Even when I was having the attack of arthritis, my inflammatory labs showed normal. The only thing off was my calcium level was high and complement low at the time. And urinalysis showed WBCs and RBCs but a sterile culture. That led to the interstitial cystitis diagnosis.

It might not be MS. I have had symptoms of something for a good 20 years or better (most likely the thyroid thing), and have no lesions on my brain or c-spine. The MS specialist felt it was highly unlikely to be MS because after all this time, he said there would be lesions. He said if in a year or so I show up with a lesion, then it's MS.

My GP wants to send me to Mayo for a diagnosis. But we did find out my symptoms are steroid responsive - another thing that points to Hashimoto's encephalopathy. They have a great team at Mayo that can diagnose it.

[mjan]

Gosh your story about your husband hitting your arm is so familiar. My hubby would touch me and say, "I hardly even touched you, how can that hurt..come on!" BUT it did! LOL

Everything seems worse when you are in the middle of an accute flair/exacerbation!! Does not mean it will remain that way.. if..that's any consolation.

Another thing to mention for many of you yet undiagnosed (like I was with 20 years of symptoms and lifetime of medical issues)...is..that INFLAMMATION on brain or through out the body IS painful and can cause so many "neurological" symptoms.

THEN the docs need/want results from tests! When they do not get the results they do not know what to do..but.. write a RX !! At least get help for symptoms.
Otherwise, from testing to treatment..what CAN they do?

Do we really want the WRONG diagnosis..or wrong treatment? Well what we would like is a NAME (or two) of what all these symptoms mean.

I finally got an MS diagnosis this year after the typical oval MS lesions appeared in the typical place in the brain. (I had over 20 lesions prior but not classical MS lesions).
BUT I have so many other complicated diseases too. They play off each other..so ya never know which doc needs to know what.

Here's how I classify symptoms: how badly does it interfere with your life, ability to work and function?
Can I cope with these annoying, sometimes painful symptoms or IS there something to take to get me through. Then is there a treatment and will it really help or make me feel worse? So now I PACE myself...REST, MOVE, REST some more.

You CAN correct the inflammation by watching the chemicals you ingest via pills, drinks, or food (not to mention the air we breathe). And there are special diets to follow to combat inflammation Not all answers will come from the docs we see..trust me.

And lastly, there is such a thing as "differential" diagnosis and Rhuematoid docs are good at figuring out over 200 autoimmune diseases that mimic MS or other diseases.

Best to you all~

Jan

[MusicMom]

Nope, I don't have interstitial cystitis, thank god! But I had costochondritis while in university and it was HORRIBLE! It lasted a good 6 months until the pain was gone completely. I was working part time as a riding instructor, and OMG to get on a horse to demonstrate something was agony. It hurt to breath, move, sleep, everything! So that is also autoimmune?

[jumpinjiminy]

Nope, I don't have interstitial cystitis, thank god! But I had costochondritis while in university and it was HORRIBLE! It lasted a good 6 months until the pain was gone completely. I was working part time as a riding instructor, and OMG to get on a horse to demonstrate something was agony. It hurt to breath, move, sleep, everything! So that is also autoimmune?

Yes. It is autoimmune. I had it during my pregnancy with my son. It lasted a good long time, like 9 months or better. It started before he was conceived.

[Sequoia]

I have acute sensitivity to noise, but not to pain.

The noise sensitivity is something I've had for many years, but it's gotten steadily worse as my MS has progressed (I'm well into SPMS now).

My husband has a very explosive sneeze, which never bothered me when we were first together (40 years ago) but now causes me to jump out of my skin!

On the other end of the sound spectrum, I can literally hear a pin drop three rooms away.

[Jade Divine]

I have similar reactions to sounds - the slightest sound (my cat jumping onto the bed) will cause me to jump and then a feeling of pain radiates into my limbs, hands and feet. It feels like electricity and is painful and feels like panic. It's a new symptom... just started since I started taking copaxone a week ago. i'm not sure what it is... could be the stress of confirming this MS diagnosis and beginning treatment cause enough stress to bring on new symptoms. It's definitley not an immediate reaction to the copaxone, because it is a symptom that lingers all day and does not come on within a few hours of injecting copaxone.

Also - the pain, sometimes my shins hurt so bad if my husband touches them or accidentally hits them it is extraordinarily painful. I also have Systemic Lupus and have been treating for that for a few years. When the lupus symptoms were bad, I was unable to hold my husband's hand because my hands hurt so bad. And I couldn't sleep on my side with my legs touching because that was painful on my knees, ankles and feet. I still have these symptoms but they are not as severe. I don't know which symptoms belong to which autoimmune disease because there is so much overlap.

I went to Columbia Univerisity MS Clinical Care Center in NYC to see a doctor who specializes in "diagnosing illnesses that are often mistaken for MS." Maybe they can help you as well. He was able to confirm that I definitly have MS in addition to the lupus diagnosis.

Good luck! It's often a long road to get a definitive diagnosis. But hang in there and don't give up. Hope you are feeling better and get some answers soon.