This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all! I am new to the boards and have some questions I hope someone can answer for me. I have actually asked the question on other forums and WebMd but still have no conclusive info.

I have been dealing w/ sx's since October 2002. First started noticing pain and weakness in hands/arms, had a loss of coordination with hands, felt clumsy, began noticing tremor. By December started feeling weakness w/ alternating periods of stiffness. Thought of Fibromyalgia, but Rheumatologist didn't think this was the cause. Sent to a neurologist who found 4 lesions on MRI...posterior/anterior right frontal lobe, lateral the atria of the right ventricle.....(I just got MY first copy of the MRI report yesterday, was told by this neuro, nothing suggestive of neurological problem, i dont' understand that!).....anyhow...

I have been examined by two neurologists...and looking at med. records, both indicated hyperactive reflexes of 3+ on knees and ankles, initially had unsustained clonus, second neuro said 3 beats of clonus bilaterally. I had expressed to both of them the pain and stiffness in legs, nothing mentioned of this in reports. I have had two major "attacks" of leg problems...first in Feb 03...woke up oneday and fell a few times before I realized left leg offered no support...could barely move the leg forward, foot drag...this year, in April, same thing happened in my R leg.

I have read that clonus is a "hallmark" sign of spasticity...I don't know if the leg cramps and spasms I feel are spasticity or possibly Fibromyalgia? Lately feels like my thighs are smoldering, stiff, and painful. it gets much worse whenever I lay down...find myself wiggling my ankles a lot...not sure if this is to keep my mind off of thighs and calves, or because it actually makes them feel better.

I've heard that spasticity in MS causes charlie horse cramping and spasms. Is there lesser degrees of spasticity? I feel that whatever it is, is progressing. My leg problems are my #1 concern at this point, restricting my activity on a day to day basis. Would the clonus indicate this is spasticity over the stiffness felt in Fibro???

I am going to a new neurologist next week. I would like to ask about a medication to help with the leg problems. Anyone have any advice regarding Baclofen vs. Zanaflex?

Thank you very much for your answers. The diagnosis process is so difficult.
~Dana

Sorry to hear this. These symptoms sound somewhat familiar to what I have experienced and I was dx'd with MS. A definite analysis can't be done without a MRI of the spine. An MRI would also determine if it is stenosis or other neural damage.

It is hard to exactly compare what you are having to what I have had so I'll describe what I felt.

Early on, my inner thigh had spasms. If I placed my foot on the edge of the table, my leg would jerk harshly to and fro in a rhythmic pattern. I did have tremedous pain in my inner and outer thigh. It felt like a monster was squeezing my upper leg.

There must be different degrees of spasticity. I think the extreme is that the muscle becomes so tight that you can't bend your knee. I have experienced this on several occassion.

After my first neural visit, my doc. put me on Baclofen. Personally, I question its effectiveness. When I did have extreme tightness, I upped the dose and it did nothing to relax the muscle. However, I still take it today. I read that both baclofen and zanax may work for some but not others. You may have to experiment to see which one works for you.

The main advice I can give you is to press your doc for an MRI. Good luck and keep us updated.

I take baclofen-the zanaflex made me extremely groggy. I also take klonopin at bedtime-helps me sleep and I do not wake up with drug hangover if I just take .5 or .25 mg. Good luck.

Good Morning and thanks for the info...

I just got a copy of my Rheumatologist' report and there is nothing indicating that Fibromyalgia is the culprit of all of this. I am so confused!

I know exactly what you are talking about, Xenova, when putting foot on a table, or when sitting and putting only the toes on the ground...leg wobbles up and down like crazy. The stiffer my legs get, the worse the bouncing.

I've also been able to realize that at first...two years ago when this was going on, that I would describe the pain in legs as "pain." Very vague. I have noticed now, though, that it is definitely a mild to moderate cramping feeling--worse in thighs and around the knee joints.

I sure hope that the new neurologist I go to will have some help for me. I was hesitant about the Baclofen because I heard that it caused severe depression...but, I don't like the idea of the drowsiness w/ Zanaflex either...Hmmmm....
~Dana

When I have muscles spasms, all my joints, especially my knees and finger, wrist, but also hips and ankles as well. For bone pain that is not relieved once the spasms are reduced with baclofen, i take ultracet. It does not make me sleepy at all. They tried to say the fibromyalgia thing with me too, but thats not it. I do not have muscle spasms all the time, but when I do, I also have joint pain, so I believe its a MS thing. My neuro knows, hopefully yours will as well.

Baclofen can also cause drowsiness. I never can tell if the MS or baclofen or other drugs are making me drowsy. I never read that baclofen can cause "severe" depression. I can't tell if my depression is from the avonex, baclofen, MS, or something else. THings have gotten better with LDN but that's a different topic.

You should analyze yourself for some of the other symptoms for MS. Do you have the urgency to urinate or any other bladder problems? Constipation? Fatigue? Disrupted sleep? Dizziness? Fatigue? Numbness? Visual problems?

If so, let the neuro know. Again, the neuro will not go farther than saying it is probable MS until an MRI is done along with a lumbar puncture and evoked potentials test.

Keep us updated.

Cathy and Xenova...you two are soooooo helpful! Thank you for your prompt replies.

Here's a my background to give you an idea of what's been going on:

September 2002: Dx'ed by laproscopy w/ Endometriosis....

October 2002: Began noticing pain in primarily in R hand, w/ accompanied weakness and tremor. By December, tremor, pain, weakness, in both arms. Trouble w/ grip, small hand/finger tasks. Also started noticing leg stiffness and pain at this time...

I was thinking possibly Fibro...Rheumy said I was not "typical" fibromyalgia patient and sent me to Neuro after completing bloodwork for thyroid, ANA, arthritist, Lyme...think there were more, but all were good.

The neuro found the 4 lesions on brain MRI but said they were of no neurological significance...said to look further into Fibromyalgia.

A few weeks go by and had the extreme weakness and loss of support in left leg...this took months before I finally got strength back, has never felt the same. Started noticing cognitive problems--one word memory loss, confusion...Tremor moved fully into both arms, legs, head, and tongue...GP suggested that I get a second opinion from a new neuro...

This neuro insisted tremor caused by anxiety...treated as such w/ no success...recommended that I see a psychiatrist...I did and the shrink reported to neuro that I was of sound mind, didn't think it was a psych problem. Neuro still did not recognize problems as being neurological. Wanted to schedule a follow-up MRI in one year.

I decided it was something I would have to live with. A few months went by and hubby and I found out we were pregnant. During my pregnancy I felt wonderful! My activity level increased immensely...did not notice the tremor as much, no gait/walking problems...decrease in pain. It was awesome. 5-6 weeks post-partum I started noticing sx's were coming back. By 3 months post-partum everything was back, plus new things I hadn't had prior to pregnancy...

Fasciculations in all muscle groups.....nothing I can't live with, just another one of those things that might indicate something...tremor returned to hands and tongue...tongue is now "lopsided" left is lower than right and deviates to the left side....fasciculations are present when tongue is at rest and protruding...cognitive problems have been a problem--slow thought process when speaking, have trouble fitting words together so tehy are gramatically correct, have noticed stuttering, which has never been an issue for me.

the pain in my legs has shifted from generalized pain, to cramping as I have mentioned. had another "attack" of the bad leg weakness, this time in my right leg. started with spasms in R thigh.....i experience lots of pins & needles in hands, arms, legs, feet...wasn't sure if this was neurological or circulatory??? definite numbness in toes of R leg when i had the worsening of weakness....numbness comes and goes....

last month started noticing eye pain/pressure...specifically w/ movement....very slight blurriness...i disregarded this until someone mentioned that i should get it checked for optic neuritis (the pain w/ eye movement being an indicator). I went to an opthalmologist, but by the time i got to the appt. eye was feeling better and she thought perhaps the eye pain was migraineous in origin, as I have been having the worst headaches I have ever had in my life in the past few months.

i have noticed the urinary urgency...when I have to go pee, I HAVE to go pee...

I have itching of unknown cause in my legs..I could scratch for hours...

I am looking forward to getting another MRI. I am not confident that MS is out of the picture at this point. My grandmother had MS and by the time hers was caught, she was blind and paralyzed. I know that times have changed as far as technology and things...but, I know that a key element in prognosis is getting a quick and accurate dx.

Let me know what your thoughts are on these sx's. How long have you two been diagnosed??? Oh...also, I am 24 y/o female...problems started when I was 22...

And, THANK YOU for your help. I appreciate your time...I know that you all have your own symptoms and lives you are dealing with and I think it is wonderful that you have taken time to help others.

~DAna

Sounds alot of what I had. You need a second opinion and MRI. Do not go to the same neuro-he sounds like a quack. MS symptoms often are quiet during pregnancy, a nd then around 3 months later, relapse, All of your symptoms, from the memory, verbal, gait, sensory, and muscular problems sound typical for MS, and you have a family history. I was very depressed by the time I was diagosed, but now, when I am very fatigued for prolonged periods, others think depression, but not, just fatigue. I did become suicidal on betaseron, and switched to copaxone. Its not just the MRI, but usually spinal tap as well. My spinal tap was normal, MRI was not. Never had evoked potentials. If you can, go to a neuro who has alot of MS patients in his practice. Hang in there. You will be amazed at how just symptomatic treatment will make you feel better.

Heya Cathy...

I just checked my WebMD post to their in-house expert, Peg Shepherd. I gave her the full version of my MRI results and she said that she doesn't know how/why the neurologist ruled out MS. She said the MRI results are typical of MS. You can check that out here:

http://boards.webmd.com/message.asp?message_id=7390665

So, yeah...I am going to call the new neuro and quiz about her MS specialties...I'm in Idaho so we don't exactly have cutting edge medical care here...I will also call the local NMSS to see if they have a good recommendation for a local neuro. If not, we are willing to travel to get a good evaluation.

Thanks, Cathy. Your advice and experience are so appreciated.
~Dana

It does seem like a classic case of MS but I am no expert by any means. I started seeing a GP months before my 36th BD. I was diagnosed with MS one month after that and started Avonex soon after.

In retrospect, I think I had symptoms 3 years before that. In my 20's, I remember having double vision when I got hot.

Anyway, it is now 16 months after the diagnosis and have been relapse-free. However, the problems with my leg did become worse on two occassions. Physical therapy did help alot. When I thought things were going down hill, I started LDN one month and now I feel 87% of my former self.

Please let me know if you want to stay in contact with me via email.

I would love to stay in contact with you via email! That was wonderful for you to offer. That would be great. I have met some other people both w/ and w/out an MS dx and it is so helpful and therapeutic to talk to other people who know what you're going through.

I am really trying hard not to jump to conclusions whether it is or is not MS, but it's very hard not to search for answers. I think it's human nature to need to know what is going on. I dunno.

Anyway...email addy is dclary@cableone.net.

thanks xenova!
~Dana

Xenova
Just wanted to tell another Louisianian hello. Did I butcher the word? LOL
Not often I run in to another person from the state I live in.

Well, you've gotten a lot of good advice. Especially, find an ms specialist or clinic. Everyday neuros are not reliable for ms.
Re: spasticity. I have one word: Keppra! maybe 3 words: Keppra! Keppra! Keppra! It's an anti-epilepsy drug so it's off-label for ms but it has changed my life. I take 2500 mg daily now (titrated at first) and only 2 mg zanaflex and NO baclofen. Keppra works beautifully. I would never take baclofen again. Research was first from U. of Texas. You can get info through Google.
Best, Vicki

Vicki, keppra doesn't make you sleepy?

Well... sometimes there can be benefits to clonus too

They started me on Baclofen because of spasms, and it worked in a few days. I've been too chicken to quit taking it.

I have/ had a lot of clonus in my left leg when tying to use the clutch in my truck, and could not trust myself on hills... in traffic etc... and was killing the engine occasionally (makes you look / feel like a real asshole, if the light just turned green and there are folks behind you)

As a result - I was FORCED to get me a beautiful new blue Chevy S10 4x4 with an automatic transmission and I love it.

Hugz n Blessed Be )O(
=Greg