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Old 07-29-2005, 06:15 AM   #1
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is this a stupid question?

This may sound weird but I just want to ask. On the inside of my thighs, the upper thighs, they have very limited sensation. It has been like that for a very long time. I can dig my nails into my skin there, not that I have, but I can. I can pinch really hard there and it barely has a sensation. If I do the same thing to the lower part of the inside of my thighs, it seems to have normal sensation and anywhere else on my thighs. Is this a normal symptom of MS or am I just a medical mystery?

 
Old 07-29-2005, 07:45 AM   #2
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Re: is this a stupid question?

Tiarah...I have a similar situation. Little or no sensation on top of my right thigh...perfectly normal everywhere else and normal on the left thigh. I am guessing it has to do with nerve conductivity. I am actually thankful for that little "deadened" spot. It makes the Avonex injection a breeze because I don;t even feel the slightest sting!

 
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Old 07-29-2005, 08:03 AM   #3
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Re: is this a stupid question?

You know, I have had this for a long time and my friend is the one to tell me the other day to make sure that i bring this to the neurologists attention. I never thought about it as being related to MS, I just figured I had decreased sensation on the inner upper part of my thighs. Hmmmm..... Now can you inject into the inner upper part of your thigh? Can you inject in teh same spot over and over again?

 
Old 07-29-2005, 08:06 AM   #4
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Re: is this a stupid question?

The only place on your thighs - I am told - that you can inject are on top and in the sides. The reason is because the injection needs to get into the muscle. Inner thigh injection would only hit the "fatty" tissue. Avonex is designed for intramuscular injection. Bummer, huh? And yes...do let your neuro know about that decreased sensation. He needs the info so he can track what is happening in your body.

 
Old 07-29-2005, 08:33 AM   #5
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Re: is this a stupid question?

Okay, thanks. How often do you inject? How soon after a diagnosis do you need to be injecting? IF diagnosed with MS, do they start you on steroids first or do they go straight to injections?

 
Old 07-29-2005, 08:40 AM   #6
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Re: is this a stupid question?

Whether you go to steroids first or straight to injections depends on your current condition and neuro's judgment.

As for how soon to begin injecting...again, you & your neuro would decide that. My neuro gave me a few weeks to thoroughly research each drug and make my decision. I chose Avonex.

After that, his office communicated with the Avonex people on my behalf, got the prescription started...and after my first dose was delivered to my home, they set up an appt for a training nurse to visit and teach me to inject. As I recall, from diagnosis to the first injection, about 5 weeks passed.

 
Old 07-29-2005, 09:02 AM   #7
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Re: is this a stupid question?

In those 5 weeks you took no medications? Where the symptoms bad in those 5 weeks? How long has it been since you were diagnosed? Why did you choose Avenox?

 
Old 07-29-2005, 09:53 AM   #8
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Re: is this a stupid question?

Yes...I did take meds during those five weeks. Elavil for pain control...Antivert for dizziness...Advil for pain (used stronger prescription as needed)...anti-inflammatories. Basically, I just treated the symptoms - which all we can do with MS right now.

The symptoms were getting better in those five weeks. I was on the tail end of a months-long exacerbation. Of course, we didn't know in those months that it was MS. We were pursuing a dx from May 2003 through January 2004. I was dx'd at the end of January and began an MS-specific protocol.

After careful consideration, I chose Avonex because after realizing ALL the CRAB meds come with the potential for side effects, I figured "once a week" was all I could stand to go through them...and because of my work/family/church structure and associated "busy-ness," once a week worked best for my needs. I also liked Avonex's support system - it's thorough. And I felt the drug had been well-tested and liked what I read as I researched it.

Some swear by the other CRAB meds...and it WAS a tough decision to make...they ALL have good points....but Avonex is what I felt worked for me. Turns out that was what my neuro was going to recommend for me, too.

I have good reports about Copaxone and Rebif too. Don't know much about Betaserone.

 
Old 07-29-2005, 09:58 AM   #9
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Re: is this a stupid question?

well, thanks for the info. Why did they take so long for your diagnoses? Is it going to take that long for mine do you think? Even with the MRI with what it says, "small white matter changes with demyelination" as well as probably text book symptoms? I don't want to go that long without some kind of answer whether it be MS or not.

 
Old 07-29-2005, 10:08 AM   #10
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Re: is this a stupid question?

MS can mimic other problems...we didn't know WHAT was wrong. It began with a breathing problem, so we did many tests on the lungs. Then it became a stomach problem...I had horrid tests on my stomach for almost 3 months and lost a lot of weight because I couldn't eat. Then it became dizziness - extreme dizziness with a feeling of fullness and burning around my sinuses. So we had a CT Scan of the sinuses and did 2 months on powerful antibiotics. THEN we went exploring for Meneire's disease. It was not until I called my internist and said "These antibiotics aren't helping with the sinus infection...I have double vision." HUGE red flag.

She sent me for an MRI which showed demyelination....they first suspected White matter Disease (fatal). THAT was an ORDEAL. That was December 2003. THEN things moved quickly...I saw a neurologist and a neuro-opthalmologist and after several more tests, MRI's, an LP and adding 2 plus 2 and getting 27, LOL!, they diagnosed MS.

So...just like MS itself, everybody's experience on the road to diagnosis is different.

 
Old 07-29-2005, 10:25 AM   #11
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Re: is this a stupid question?

Wow, isn't that funny. This past year, probably in March or April I had been having breathing problems. i am constantly taking cough drops as it seems to open up my lungs somewhat, but anyway, they sent me for a pulmonary function test, which came back normal. They said my breathing was fine but it doesn't feel like it is and hasn't in a long long while. I still take cough drops at least 10 times a day just to get that "open" feeling in my lungs. I have been treated also for "allergies" and "Eustachian tube disease" now for about 4 years because of this fullness that I have in my right ear. Tried every antibiotic, ever OTC and prescription medication plus nasal sprays and even with my insurance the copays for these meds was ridiculous. One day I went to the pharmacy for yet another type of medications, came out with this little bag and spent 60 dollars, which the medication did absolutely nothing. I have my scans with me so I can take them to the neurologist and, not that i have a trained eye, but I don't know what they see in white matter changes and demyelination. I even looked on line at other sites to see MRIs of positive MS and normal MRIs and mine look normal. It doesn't make sense to me. I have doubt that they will find anything and then I wonder why I am experiencing these MS symptoms. In your "unprofessional" opinion, could this be nothing even though the MRI said what it said?

 
Old 07-29-2005, 11:00 AM   #12
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Re: is this a stupid question?

Wow....I can't really give any sort of opinion on those MRI's. I did the same thing as you...and still couldn't "read" the films. "Something" is obviously going on.

I was like you...always getting new meds as the docs tried to figure me out! At one time I was seven different meds simultaneously, plus Avonex. Ugh!

 
Old 07-29-2005, 11:07 AM   #13
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Re: is this a stupid question?

I guess only time will tell. I hate this waiting period though. Thanks for your info!! Have a good day!!!

 
Old 07-30-2005, 02:07 AM   #14
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Re: is this a stupid question?

Quote:
Originally Posted by tiarah
This may sound weird but I just want to ask. On the inside of my thighs, the upper thighs, they have very limited sensation. It has been like that for a very long time. I can dig my nails into my skin there, not that I have, but I can. I can pinch really hard there and it barely has a sensation. If I do the same thing to the lower part of the inside of my thighs, it seems to have normal sensation and anywhere else on my thighs. Is this a normal symptom of MS or am I just a medical mystery?
Just a thought but. if you're going to see a Neuro, then it might also be worth asking him/her to check for any possible disc problems in your spine. Sometimes numbness can be caused by that too - a spinal MRI should show if that is the problem. Good luck.

 
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