Symptoms progressing more rapidly.

[mitchel friedow]

Hello all,

My symptoms seem to be progressing at a more rapid rate than over the past year. I have much more rigidity, twitching and spasms, and now I have bulbar symptoms that I have never experienced in the past, such as a hoarse voice and facial faciculations. The neurologists currently have me on 80MG of Baclofen, 324MG of Quinine Sulfate, 75MG of Lyrica, 2MG of Chlonazepam, 500MG of Hydrocodone(when I need it) and 3MG of Lunestra per day. When that doesn't seem to provide enough relief, I still take a couple of 800 MG Skelaxon tablets per day. I am also going to start taking Sinimet to help with my slowness of movement. Needless to say, I feel like a walking pharmacutical company. I should be as loose as a goose, but I am more like a stiff in the morgue. My real concern is that I have not gone past the five year window that my neurologists have set for me to not have ALS. Does anyone else take this much medication? If so, what are the results?

 

[DBowman]

Wow, Mitchel that seems like a lot of different medications to me as I didn't recognize some of them. I know what the Baclofin and the Quinine and the Ambien do, but I'm not sure about the others...Has anyone ever mentioned "Rilutek(Rilusole)? Where were you diagnosed? I'm sure your doctor is giving you immediate symptomatic help. My neurologist has never mentioned the others to me. Is one of them for your emotional lability? Why do you take Ambien...are you having trouble sleeping? I noticed I sleep a little, get up for a while, and go back to sleep....all in all, I probably DON'T get the sleep I REALLY need. I really have poor sleeping habits anymore. Is something like that happening to you?What are the other meds for and how are they helping you?

Godspeed, DBowman

 

[sral]

I've done alot of research on the point at which a PLS diagnosis can be made. They recommend 5 years for bulbar onset. My mom's neuro however, said that it's 3 years and she has bulbar onset.

 

[fiddleplayer51]

Hello Mitchel,
No wonder you feel like a walking pharmaceutical company! (That's a great description BTW!) I agree with DBowman--that's alot of different meds. Were they prescribed all at the same time, or were you prescribed some of them and didn't experience relief of your symptoms and so were prescribed more? I would ask your neuro to re-evaluate. Also, I think there can sometimes be a danger in attempting to mask symptoms. To mask symptoms can cause us to lose touch with what we are really feeling.

When will you have your next neuro appointment? Have you had an EMG or has your neuro mentioned EMG and other tests? Five years sounds like such an arbitrary time frame to work within and an awfully long time to watch and wait. I would encourage you to schedule an appointment with your neuro and even go so far as to be referred to a neuromuscular specialist. I think knowing what you're dealing with if at all possible is essential as well as the peace of mind it will give you if the EMG is negative.

The array of manifestations of symptoms, the order in which they appear, the degree to which they are manifested is so varied, that each case must be examined and treated with completely individualized attention. No two cases are alike.

This isn't to alarm you, but I think being pro-active in your care plan is essential especially with these NMDs.

All good wishes as you seek answers, Mitchel.

Jane

 

[olly]

mitchel

that is way too much meds,80mg of baclofen is a huge dose.
if all this is not working then you may need a baclofen pump fitted,this gives a slow constant release and works faster and better than the meds.
it is used when like yourself people can not get relief the conventional way.
ask your neuro/doc about it.
take good care
caroline

 

[mitchel friedow]

Hi all,

The current medications that I am taking were prescribed over time to deal with the symptoms that I have developed over the past four years. As most of you know the Baclofen is for the muscle rigidity and the Quinine Sulfate is for the muscle cramps. I agree that 80MG is a lot, but I am trying to put off using the Baclofen pump for as long as I can. My rigidity is severe enough that it has affected my ability to walk, move and sleep. The Baclofen allows me to walk without shuffling my feet ,so that I am not constantly tripping on stairs and toe tripping, especially on carpet. The Lyrica and Chlonazepam were prescribed to help with my involuntary muscle movements, which usually occur at night. Sometimes, my legs and arms have a mind of their own and move about. The Lunesta was prescibed to help me try and sleep, although the rigidity gets so severe at night , I wake up because I can feel the pressure placed on my spine. The pressure sometimes results in pain that warrants using the Hydrocodone for relief. I also frequently recieve trigger point injections in the spine at the local pain clinic to help relax the soft muscle tissue around my spine that contracts and spasms. My local neurologist is starting me on Sinemet to help with my slowness of movement and to also combat my rigidity.
I have been seen by neurologists at Mayo Clinic, but their opinion is that I have a neurological condition yet to be determined. Emg's have so far been inconclusive and since I have not exibited any atrophy, they are reluctant to put a name on my condition. My opinion is they are holding out making a diagnosis, until they are sure that I don't develop Lower Motor Neuron signs. My local neurologist has talked to me about the possibilty of me having PLS. I also currently take an antidepressant to help me deal with the frustration. Changes are starting to happen, more muscle twitching, increased lack of cordination in my hands and recently I have developed a hoarse voice. Time will tell.

 

[Al]

Sorry to hear things aren't going all that well Mitchell. Hang in there.
AL.

 

[fiddleplayer51]

Mitchel,
What neurological symptoms were you having prior to your back surgery in 2004? What problem was the back surgery addressing and what part of the back was operated on? Did the back surgery correct or relieve whatever it was intended to correct/relieve?
Lots of questions....I'm just trying to piece the chronology of your symptoms together.
All good wishes,
Jane

 

[DBowman]

Mitchel...Have you ever heard of Stiff Man's Syndrome?

DBowman

 

[mitchel friedow]

My back surgery in 2004 was to remove a portion of the disk located at the S5-L1. It was an emergency surgery, in that some disk material had become lodged in the main nerve root going down the left side of my lower body. The pain was so bad that I was put on a morphine drip and believe me when I say, I was hitting the button when ever I was alowed. The surgery went well and for some time I was pain free. The thing that the neurosurgeon didn't tell me is that when you have this type of surgery it causes more stress on the adjoining disks in the spine. The rigidity I now have, contributes to the stress placed on the area of my back that the surgery was preformed. My neurological symptoms became much more pronounced about two months after the surgery. Looking back I may have had symptoms prior to the surgery, but I'm not sure.

My local neurologist has discussed "Stiff Man's Syndrome", but he is inclined to rule that out because of other upper motor neuron problems that I am experiencing. He has also discussed Multiple Systems Atrophy, but again I have some symptoms unrelated to this disease. Mayo Clinic is simply in a holding pattern, waiting to see if more symptoms develop. My next EMG will done sometime in the next six months.

 

[sand]

Mitchel,
Wow, I also had back surgery in 2003 and my left leg weakness got worse. I am also having left arm and hand weakness. I just was diagnosed May 28th with PLS and started Rilutek along with more Neurontin (300mg. 3 tablets 4 times a day. I also take Hydrocodone 650 mg when needed for back pain. The Neurontin controls my leg tingling and numbness. It seems my meds are different then yours and I will be seeing my general doctor on Monday to discuss lithium since my neurologist doesn't want to prescribe it. I am willing to try anything to hang on for a couple of more years.