Getting concerned, looking for input, if not MS, then what?

[Corriel]

Hi folks, I apologize in advance for the length of this one but I am starting to get nervous and am hoping some of you may be able to shed some light.


I have RRMS and in Dec 2013, I was told I had brisk reflexes in both arms and legs. I was noticing that the tone of my right bicep would increase dramatically if I did a lot of writing, sweeping, etc. My OT at the time told me that the spasticity was making me grip things too tightly.

In the fall of 2014, both of my hands would cramp up with activities involving gripping. My arm (it varied which one but mainly my right arm) would get tight, sore and feel a bit fatigued. My finger and wrist dexterity seemed to be worse too in December of 2014. I had previous approval to adjust my nightly Baclofen and I was only taking 10 mg so I upped it to 15 in January 2015.

At the end of January 2015, after a day of housework (I can never seem to do it in pieces, it is usually all at once), my right hand got incredibly weak and I could not even wring out a dishcloth. The left hand started to cramp because I was using it more. I cannot say I have noticed anything sensory, occasionally pins and needles but not when I have the cramping. Definitely no problems with numbness of either hand.

I called my neuro's office to see if I should maybe take Baclofen more than once a day and he asked me to come in instead. His take is that unless I have a c-spine lesion then it is not MS related. He said we would do an MRI and an EMG and that maybe it would "only be a pinched nerve".

I had the MRI and c-spine is clean. After several scheduling issues I got an appointment sooner than the original March 24 date for the EMG and went to my hospital on Feb 27.

When I got there they said he had only ordered a nerve conduction study and because he was on vacation there was no way to confirm so they only did the conduction without EMG.

I am still waiting on those results but if this isn't MS, what the heck is it? The gripping strength in my right hand is much better but still not 100% and the left isn't great but still better than right.

He did a partial neuro exam too and noticed my left leg was quite weak (minimal patellar reflex) but he doesn't seem to be too concerned and hasn't tested anything for my legs so I am going on the assumption that the leg is MS and not related to the hand issue.

Thanks so much for any input and I apologize again for the length,

Corrie

[Corriel]

Thanks guys!

Kyle, like you, I found it odd that he is insisting it isn't MS related but I also can't fathom that I could have that signifcant amount of weakness not show either so I'm officially stumped. The MRI did show a slightly protruded disc in C5-6 but the radiologist said it was not "significant".

Alex, I am hoping that once my neuro gets my nerve conduction results he will call but I am planning to touch base with his office again mid-next week to see if the results are in and if they are, I will be making an appointment then. I am always intrigued about the grey matter changes but my neuro never speaks of them.

Thanks again,
Corrie

[HVAC]

Most of the damage in MS is gray matter which does not show up on MRIs which only show white matter. Every case of MS is individual.When do you see the doctor again?

Alex

[kwarendorf]

SPMS is nothing more than a label. It does not indicate any specific level of disability. It just describes, in very general terms,  the trade off between defineable relapses and steady progression of the disease.

I was diagnosed in October of 2011. My initial diagnosis was SPMS. I have not had a replase since I was diagnosed. Neither have I experienced any noticable progression of my MS.

I'm not sure why your doc insists that MS problens with your hands are only associated with c-spine lesions. I don't think I've heard that before. I have heard that c-spine lesions are notoriously good at hiding from MRI views.

Kyle

[Corriel]

Thanks so much for sharing Karry! My reflexes never seem to get tested regularly and not always by the same doc (sometimes it is the neuro, sometimes the physiatrist).

The grip strength scared me and even my massage therapist is noticing that things seem to be worsening. At first I had trouble with biceps, then the forearms, then the hands which all seemed to get worse about 6 months ago.

In the last month she has noticed issues with both rotator cuffs, my right bicep tendon and my pecs, delts and lats on both sides. My neck and shoulders hurt more than my hands now and I'm thinking this all has to be related.

I get frustrated because my brain MRI is unchanged from 7 months ago and spine is still clear so I thought if this isn't MS maybe my family doctor can help.

I saw him a couple of weeks ago and he said that it sounds like MS to him but it just isn't visible on MRI yet so he passed me back to my neuro.

I didn't agree with the neuro at first but it does seem to make sense that if it is affecting both sides it should show on c-spine easily enough.

I should take more magnesium but I know it is usually recommended at certain times before/after other meds and I just can't seem to remember it when I should.

Might not be a bad idea to see about getting my level checked too.

I do have osteo in both hips with bone spurs as of about 4 years ago but my family doc said it wouldn't cause the leg weakness. He moved my arm around a bit and said the joints felt fine so he was confident everything was MS related.

I wondered about RA but nobody seems to be leaning there or asked me to have any blood tests.

While I appreciate the neuro's somewhat placating approach in telling me it might just be a pinched nerve I'm pretty sure that is bull. :)

We do seem to have a lot of similarities with symptoms so maybe between the 2 of us we can get it figured out.

SPMS? Really? Has your neuro said anything about that?

C.

The nerve conduction study was a week ago so I am hoping that maybe I will hear something in a few days.

[karryon55]

Hi Corrie,

When I read about some of your symptoms or clinical signs I always think you sound a bit like me. We were dx about the same time as well. I recently spent time in hospital and I had a different team of Neuros or trainee docs most of them as my usual Neuro is not at this facility. Anyhow I have brisk reflexes in all 4 limbs with the trainee Neuro and I thought that maybe they had not tested them properly.

I do believe that young people (lol I'm not sure I fit that category anymore) and nervous/anxious people can show bilateral brisk reflexes. This sort of made sense for me as I was not exactly happy with the way things were going for me with these young docs so I could easily say I was feeling nervous at the time. I do know that my reflexes aren't usually all brisk rather some are and some aren't.

I also get a lot of muscle spasms and spasticity but I recently found out my magnesium was way too low and the supplements I was on were not being absorbed. I am now on capsules & my levels are better but I don't feel my spasticity is good enough for me so I am going to see my Neuro in July and ask about Baclofen. I can get tightness and stuff going on in many of my limbs/back but I'm never sure if this is MS or arthrits going on.

I somehow got labelled with SPMS which my Neuro has never mentioned to me so I'm trying not to take in what the teaching facility have said as it is probably invalid.

I'm trying to not get off track here sorry. I would be interested in what your results say and if there is something else going on with you or even something different altogether. I have just felt uneasy about my dx and that's for many reasons but mainly because of my existing RA and autoimmune stuff going on & I feel I'm a bit atypical in my presentation.

I have weakness in my right leg and left arm. My right grip is useless though but my left is better. I put a lot of my problems down to my RA and was wondering if you have been checked for arthritis?

I'm sorry I don't come with any brilliant answers for you Corrie but I do feel for you. I hope you get some answers soon.

Gentle Hugs,

Karry.