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Old 08-15-2013, 12:53 AM   #1
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was told monday, probable MS

So I have been in a steady decline since mid March when I first began having trouble walking, nearly falling, several times a day. Right leg would just go out after a sudden, sharp, stabbing pain in my lower back. After 2 wks of this, I went to the dr because the pain was not tolerable. Got pain meds and an mri, found mild arthritis on one facet, a bulging, degenerative disc with a small tear and figured we found the culprit. I saw a pain dr, got 3 epidural injections that did not help, in fact I was getting worse slowly. Working as a cashier became harder and I started physical therapy. By the first week of may I was having shooting pain down my right arm, was dropping things because I would just let go and my arm would go numb. Then the pain in the neck and arm got so bad I didn't sleep for two days. With a numb/painful/at times tingling hand and arm and severe neck pain I went to the dr and requested a cervical mri and to see a spine specialist. The neurosurgeon started me on gabapentin 3 wks ago and ordered a thoracic mri also. Neck has 4degenerative and bulging discs, no cord impingment and 2 arthritic facets. So yes my neck should be hurting but didn't explain everything else. Thorasic showed 5 nerve root sleeve cysts. I have now been on medical leave for the past 6wks, laying in a bed or re liner in intolerable pain. I finally agreeded to take the vicodin round the clock and am taking the gabapentin which they help, but I cannot function as a 32yr old mother should. Monday the right side of my face got fuzzy and heavy, tongue was tingling, so my mom to me to the hospital to rule out stroke, that is when I met with 2 neurologists in the er who looked over my mri's that were in there system and said that because of the cysts and the mri not giving an explination they both believe that ms is highly probable. I am going in on the 20th to meet with them. Any advice, I just want my life back and the quality of my life is steadily declining and I feel helpless, like my body is revolting against me.

 
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Old 08-15-2013, 07:27 AM   #2
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Re: was told monday, probable MS

Froggie91206,

Welcome. Thank you for sharing your experiences thus far.
I certainly hope that you can get an answer on the 20th.

Some of what you are feeling may well be your disc issue but also the meds you have been prescribed which do not allow you to function well as "Mom". Gabapentin has a mixed success rate and for many MSers who take it or who have taken it, higher dosages are needed as time progresses and eventually for most it is ineffective. After an extended period, you have to be weaned off of gabapentin to prevent any withdrawal because an immediate withdrawal can cause adverse reactions.

The numbness in your face and tingling are symptoms I get in the summer months. Cold water or a cold compress can help, but there is little relief. The symptom is an annoyance.

MS attacks will come and go and with any luck, your problems will fade. Talk to the neuro about getting off of Vicodin and if you should get off gabapentin. You might try getting off of Vicodin first and then note any changes with regards to feeling more like yourself.

I am glad you reached out to share with us herein. I hope you know you are not alone. If you need to discuss disability, you can discuss this on the Insurance forum on this same site. If you have questions before the 20th, we are here. Do let us know what happens on the 20th. MS, if this will be your diagnosis, is not fatal and you need not relinquish your position as "Mom".
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Old 08-15-2013, 09:27 AM   #3
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Re: was told monday, probable MS

Thank you for replying. My wish is to boff pain meds because I don't ever want to become dependent. I asked for other meds, had a severe reaction to both tramadol and toradol. My dr is trying to get me to take a higher dose even of vicodin so that the pain gets controlled and allows me to function, but I don't want to be "high" all the time, so I am sticking with the lowest dose. It is the pain that is preventing me from functioning, not the meds, but I refuse to be drugged up. The pins and needles in my right foot is very annoying and having significantly weaker right side is also a scary feeling. At this point I just want answers and a game plan. My mom, working in neurological research, said if it comes back positive, there are a few studies I could get into, so that is encouraging. Thank you for the advice on the facial symptoms. Glad to know it isn't just me when it comes to gabapentin, seems like it just makes me feel weird, but doesn't take the pain. I just want to be able to go for walks and play with my son, without wanting to just cry in pain. Heck, I just want to sleep through the night without waking up from the pain in my leg. Do you find that using a tens unit is helpful? I am using it a ton, but as soon as I turn it off, any relief I felt is gone. Well again, thank you. I have been on the back board for a few weeks, but with this new information I thought seeking out support here and reading through others posts would be helpful. This diagnosis would explain the black blurred spots in my vision for the past few years. Even considering this diagnosis seems incredibly surreal to me.

 
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Old 08-15-2013, 10:49 AM   #4
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Re: was told monday, probable MS

Froggie91206,

A TENS unit does not work for me, but if it works for you, use it. My mother used a TENS unit for her intestines when she was in her late stages of Parkinson's.

There is no specific tests for MS whether an LP or an MRI. The only thing doctors can do are to eliminate the MS mimicries. An MRI cannot confirm or deny MS, but it is used as a tool under the Revised McDonald Criteria. The LP cannot confirm or deny MS. 85% of MSers have positive results for O-bands, but 15% are negative for O-bands. My results have been negative after 2 LPs (1982 and 2002).

There are few, if any, meds which can deal effectively with pain related to MS. I use my own remedies which work for me. There are some other MSers who have also used or tried my remedies and the result is mixed. The TENS unit works for you and there is nothing wrong with that.

Answers are indeed what you need. When you formulate a game plan, I would encourage you to make your plans while you are not under stress or duress from the pain. Make your strategies objective rather than allowing any subjective ideas to skew your plans.

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Old 08-16-2013, 05:28 AM   #5
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Re: was told monday, probable MS

"Any advice, I just want my life back and the quality of my life is steadily declining and"

i really relate to you about this and how it feels to see and feel the quality of life is declining . but .. think of something you really love doing and try doing it more .. it helps me when i define new goals and dreams about a few things i love.
i wish you the best.

 
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Old 08-16-2013, 08:17 AM   #6
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Re: was told monday, probable MS

Thanks. My goal today will be to pass the next level on Candy Crush that I have been stuck on for weeks! Hahahaha I couldn't resist Hey, at least my sense of humor is still intact, right

 
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Old 08-16-2013, 08:41 AM   #7
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Re: was told monday, probable MS

Froggie91206,

LOL, a goal is still a goal. Keep your sense of humor and you will go very far. In 1982 I learned to crochet to recover my hand use, In 2002, when my MS worsened, I played video games with my sons. Times change!! Take each day, one day at a time.
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Last edited by MSJayhawk; 08-16-2013 at 08:42 AM. Reason: typo

 
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Old 08-16-2013, 09:31 AM   #8
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Re: was told monday, probable MS

Jayhawk, I love to knit and crochet, and have been working on my now 8mo old nieces baby blanket for way too long. I just have to keep stopping. And now there is another new baby in the fam too...At least my sisters are very understanding. They know it is something I love to do for the babies, and the others have one, so at this point, I will get it done when I get it done. I work on it for about 20-30min a day for the last few days, but that's all I can do before the pain makes it not an option to keep going. I just plan on getting both of the babies their blankets by Christmas, and figure that saves money on presents. Is there anything you have found to help your hands? or is it the continued use that helped over time? thank you so much for reaching out so quickly, you have really helped ease my mind, as I am sure you know, is just kinda in a state of shock and limbo. Well I must get back to my candy crushing Yes, I have a problem, wish I had never started that darn game, it sucks you in!

 
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Old 08-16-2013, 10:52 AM   #9
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Re: was told monday, probable MS

Froggie91206,

No worries. I learned to crochet because I needed to re-teach my hands and fingers how to work. My uncle used to make crocheted doilies out of feed sack string and he continued to do so to keep his fingers nimble for his job. I figured if his hands could make things I could too.

When I crocheted, I would do it while I studied at college. In 2002, I was starting to crochet again, but as "dad" my little one had other ideas. Lego blocks were the first thing and my rehabilitation nurse said to go for it. We built forts and castles and many other things. As I recovered, video games were the next thing the boys enjoyed and I got an extra controller. Actually, the video game was good in that it exercised cognitive functions too. As my two sons have left me behind (dad is no longer able to challenge them except in a couple of Wii sports) , I have my gardening to help my hands maintain exercise.

Nowadays, my hand problems are currently temperature triggered problems. Cold water soaks in the summer and warm gloves in the winter and I am fine. I have found that the crocheting is more difficult as my fingers are not as nimble as 1982. I now use a larger crochet hook. if i had a local knitting teacher, perhaps knitting would be another thing to add?

When I crocheted, I would go until my hands hurt, then rest and go again. I carried my bag of yarn with me and would crochet every time there was free time. I did not have temperature intolerances in 1982. In 2002 I found the temperature intolerance affecting me. The cold soakings in the summer help, but the insulated gloves are not good when you try to crochet! If you can only do 30 minutes, count that as a blessing. Like little steps, even a large project will eventually be finished. If we take the first step, we are headed in the right direction!

If you have difficulty with your hands, like me, I would encourage you to be careful in the kitchen. Cutting and slicing is something I no longer do. I use a pair of food shears (scissors) to stay safe.
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Old 08-16-2013, 05:34 PM   #10
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Re: was told monday, probable MS

Quote:
Originally Posted by froggie91206 View Post
Jayhawk, I love to knit and crochet, and have been working on my now 8mo old nieces baby blanket for way too long. I just have to keep stopping. And now there is another new baby in the fam too...At least my sisters are very understanding. They know it is something I love to do for the babies, and the others have one, so at this point, I will get it done when I get it done. I work on it for about 20-30min a day for the last few days, but that's all I can do before the pain makes it not an option to keep going. I just plan on getting both of the babies their blankets by Christmas, and figure that saves money on presents. Is there anything you have found to help your hands? or is it the continued use that helped over time? thank you so much for reaching out so quickly, you have really helped ease my mind, as I am sure you know, is just kinda in a state of shock and limbo. Well I must get back to my candy crushing Yes, I have a problem, wish I had never started that darn game, it sucks you in!
How sweet. i think gradually you can find a way to do knitting and other things you love even more efficiently ... i think this will happen ... there is always a way. many of us have complete health but we dont appreciate it - but when we have limitations like pain we can appreciate more and every moment. here is the secret!
having breaks and trying to meditate ( just forget work ) helps my hands and other things.

Jayhawk is right. i have hurt my hands in kitchen a lot recently ! take care, use good knives, ask others to help, dont work with cold and hot things and wait. etc.

Last edited by shahila; 08-16-2013 at 05:38 PM.

 
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Old 08-17-2013, 04:51 AM   #11
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Re: was told monday, probable MS

Froggies,
sending you prayers of strength..please keep us posted on how things turn out and know that no matter what you hear, it doesnt change who you are.

I definately agree on your thoughts to get off the Vicadin, as many of the symptoms you are describing could actually be from taking it....Gabapentin doesnt help very many MSers- some, but not many...it wll be interesting to see as you decrease certain meds, how your body responds..

Wishing you better days ahead and answers coming!
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Old 08-21-2013, 11:51 PM   #12
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Re: was told monday, probable MS

So two days with no vicodin, my choice, and no difference aside from a clear head and slightly more relaxed shoulders. Good to see that wasn't helping in any way, just made me high...ugh.
I saw the neurologist yesterday and I first met with a resident who seemed like he just got off of a psych rotation. It became quite infuriating as he kept pushing the "are you depressed" question at me and was unwilling to accept my answer of no because he saw in my chart that years ago I had taken zoloft. It was quite demeaning and very angering. I finally got so mad I couldn't stop the tears and told him I was now feeling very defensive and as though he made his mind up before he walked through the door. He then aske me if I had any guilt, to which I replied, "doesn't everybody have some guilt about something. What guilt do you carry?". Maybe I went too far, but I was ******. I know what depression feels like, I overcame it and it sure as hell didn't have any of these side affects. Ugh... once the attending came in, he did my physical which showed a weakend right side and hyper reflexes. At that poit the prior convo was never brought back up. After hearing that 5yrs ago I also was diagnosed with epteem bar, he ordered the mri of the brain, with and without contrast and uped the gabapentin, which is only making me more tired with minimal relief, but I will take that for now. So now I just have to wait on insurence to authorize the mri, will be a few weeks if they keep going like they have been. Will keep you posted.
Thank you all for the positive thoughts and encouragement, it means a lot. Night

 
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Old 08-22-2013, 02:05 AM   #13
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Re: was told monday, probable MS

hey! i really relate to you about your experience with the resident. i m sorry he hurt your emotions. such things make you sad. i learnt when someone with limited knowledge asked this question it is good to stay calm and say yes, i m very sad of my situation. they just want to hear this and they don't care after you say 'yes'.the evidence is seeing all the physical pain, but still who cares!

Good days will come to you ! i cant think of any happiness or unhappiness that lasted forever. all the best.

Last edited by shahila; 08-22-2013 at 02:05 AM.

 
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Old 08-22-2013, 06:59 AM   #14
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Re: was told monday, probable MS

Shahila, thank you so much. It was just upsetting because he was telling me that my "perception of my pain could be from depression", and when I said I wasn't he insisted hat I could be depressed and not know and that could be causing my pain.so I was defensive, and it really upset me. I already changed to a different dr in my pcp office for someone trying to tell me it's in my head, without ever doing a physical, which shows there is a problem. And you are right, no happiness or sadness lasts forever. I really appreciate you acknowledging my feelings on this. That means a lot. Have a great day!

 
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Old 08-22-2013, 08:04 AM   #15
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Re: was told monday, probable MS

froggie91206,

Sorry to hear of your bummer of a visit. Residents and all doctors should take a bed side manners rotation, I think. Given the resident's apparent lack of experience, you have to let these things roll off your back. Some residents are hoping to get a feather in their caps for making a diagnosis early. My neuro has residents in her office, but they start by shadowing her and then if they pass muster they are given some free reins.

I am happy you are no longer on meds that simply keep you from reality. You need as much clear thinking as you can gather. IF IF if you have MS- most of it IS IN YOUR HEAD. That is, your CNS is managed through the head and lesions will be found in the head or along the CNS "wiring" (c-spine, t-spine, and maybe even L-spine).

You also need to remember that MS can cause anxiety or depression too. they can certainly be standalone diseases/problems, but they can also be MS linked. There is no shame in this and you should not be made to feel ashamed. The fact that you are trying to get an answer shows that you want answers and you recognize that there is a problem.

As for the people who seem to slow things down or simply cannot empathize or understand your situation- the world has always had these people existing and they will always exist. You need to ignore them and move forward. there are, i believe, more who will help you than those whom you are best to dismiss.
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