Possible MS?

[Lyndsay_w]

Hi, everyone. Sorry if this post is long, but I'm so confused and frustrated. I'll try and start from the beginning.

Back in March I went into urgent care because my right arm from slightly above my elbow to the middle of my forearm ballooned up. I was sent to the ER to rule out a blood clot. The ER ruled that out but had no clue (I had no pain at the time). Sent home with antibiotics and told to rest it just in case it was an injury or infection. I ended up really sick from the meds and back in the ER so I couldn't take them.

As the weeks went on, I did develop a nerve type pain in my right arm. I go into an ortho urgent care and X-rays are done showing nothing, MRI ordered of R elbow. And to follow up after MRI. Positioning for X-ray did cause pain to flare up more.

MRI done and comes back normal. They then thought I had cubital tunnel. Give corticosteroid taper pack, I took that and it caused a huge flare up in pain. An NCS was ordered and showed carpal tunnel in R arm, nothing else. Just prior to this, I started having some weird nerve pain in my left arm near my elbow and numbness/tingling sensation.

I come back and a new dr in the practice sees me and orders blood tests to rule out Lyme, lupus, RA, etc. I was given an anti-inflammatory that did work for about 2 weeks. Then suddenly I had a flair up in carpal tunnel in both arms that would not go down along with my elbow pain. (This had never happened before.) I was given an injection into my R carpal tunnel diagnostically and that didn't work. This was the first time MS was mentioned since now pain was in both arms.

I followed up after to go over results from injection, told him it helped very slightly if at all, prior to that appointment I started having what I describe as brain freeze in my arms if my hands touched something too cold all the way up to my elbows. From here I was referred to a neuro and have an appointment in a couple weeks.

Now in my arms, if I don't have pain, I have numbness and weakness. My whole arms feel sensitive to temperature. The pain is getting worse. It'll stay stagnant for a bit, and then all of a sudden worsen....then that becomes my new norm. I think I may be starting some pins and needles nerve pain in my feet, but I feel like I'm starting to question myself...

I do have a history of migraines for years and years, also a history of bladder and kidney infections. One symptom I associated with having had kids was not being able to fully empty my bladder, but now I read it could be related to MS.

I'm going insane with waiting and not knowing and dealing with the pain. Does this sound completely crazy? Anyone go through anything similar? Have any other suggestions of what it could be? Thanks if you read this all.

[kwarendorf]

Hi L -

I would recommend that your MRI include your thoracic and cervical spine as well as your brain. It should also be done with and without contrast. A brain MRI will only give you a piece of the puzzle.

Kyle

[Lyndsay_w]

Thank you for your comments and replies. I will try and make sure I hit all of your questions.

I am currently waiting to see my neurologist, and was told by my ortho the first step would most likely be an MRI of the brain. The ortho is the one who first mentioned MS.

I do understand the swelling is out of he ordinary, but my left arm did not have any swelling when the symptoms started on that side. My ortho became very concerned with how suddenly my left arm started to catch up symptom wise to my right arm when previously it was symptom free.

Since initially it all started only in my right arm I have had an MRI and X-rays of my right elbow. Nerve conduction study of my right limb, clean other than carpal tunnel. Also received blood tests for Lyme disease, lupus, rheumatoid arthritis. All negative.

I see my neurologist on the 28th, but it took over a month to get in for that appointment and knowing that I won't actually have answers from that appointment, will just be sent for more testing...I just keep hoping I come across something that jumps out at me and screams, "that's it! That's what you have," so I can start to move forward.

[immisceo]

The person you were responding to is in the United States. There are MS specialists much closer to home for them.

[Kylies1]

My name is hystery and I am 45 and have just been diagonised with ms and I think u could very possibly have ms because I relate  to yr story. We have had v similar experiences. I am quite fatigued at the moment.  Would recommend seeing or speaking to professor simon Hawke  (neurologist who specializes in ms patients) in orange nsw australia. Your pain is unbearable I understand. Get an mri done for ms and if it is the neurologist will give u appropriate medication for the pain and appropriate  ms medication  and this makes the pain bearable until u recover or not. Love misery guts.o

[HVAC]

I am thinking more rhematologist  as well. What you are dealing with is not like MS.

Alex

[immisceo]

I'll try to take this point-by-point (By the way, thank you so much for breaking your post into manageable paragraphs. A lot of us have vision issues, and this makes responding a lot easier!)

Limb swelling is not associated with MS. MS is a disease of the central nervous system. However swelling and inflammation is an immune response. It's not unreasonable to think that whatever the underlying cause of the swelling or the swelling itself caused some residual nerve damage.

The steroids would likely have been given to combat swelling (in the absence of finding anything structurally wrong) as they are anti-inflammatory, sometimes powerfully so. It's unusual to have pain associated with taking them, however, as anti-inflammation meds are also used as pain killers. Tylenol, advil, etc. are all classified as NSAIDS, the a and i standing for "anti-inflammatory".

Have you been referred to a rheumatologist? The things you mention sound a little bit more their patch of ground (joints, swellings, pain, etc.) Who mentioned the following to you? ----> "This was the first time MS was mentioned since now pain was in both arms." That doesn't really make a lot of sense. Pain in two arms is not likely to make anyone think of MS, not in isolation at least. Perhaps it was mentioned because all other tests were coming back negative or inconclusive and they just didn't know what else to pursue.

Importantly, I'm just a layman. No medical training. From your description it seems like this could be related to something structural or damage being cause to the musculoskeletal system - arthritis, degenerative disc disease, these sorts of things - but I do note your young age.

Nothing is shouting MS at me. Have you had any brain or spine MRIs? Your past history with migraines means it's likely that some 'spots' (foci) might show up, but what they're looking for with MS generally looks quite distinct.

Pain or sensations that get worse or better based on position points away from MS. Our misfiring brains don't care what position our limbs are in. If my foot's numb, it's staying that way no matter how much I stamp on it or elevate it, because the problem is in HQ. Literally, it's brain damage.

I know I've rambled a bit (only half way into my morning coffee), but my non-professional opinion is that it's something more in the realm of a rheumatologist than a neurologist.

[ConfirmedRachel]

Hi Lyndsay,

Sounds like you've been having a rough time of it!

I'm no medic, but from what I've just read both results and scans I wouldn't have said MS would have come to mind. Was your Neuro an MS specialist?

I am very surprised that MS has been mentioned by anyone tbh and as the other more medically knowledgeable on the forum will tell you MS has many many mimics and if you were to google most symptoms we can get, MS usually comes up as a possibility, scaring the life out of people!

Usually the outcome is something else particularly when you experience symptoms to both sides of your body, and in peripheral areas easily affected by damaged nerves other than your central nervous system (brain, optic nerve and spinal cord) which is what MS is attacking.

What are you waiting on now in terms of tests? Bloods? Any next appt booked?
If by chance you do end up with an MS diagnosis, there are treatments you can have to help (unfortunately no cure) but truly your life won't just stop!

Nx