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Old 02-10-2008, 08:27 PM   #1
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new here

Hi all -

I have a son who is in his early 20s and who has a mild form of cerebral palsy from his premature birth. In the last two years he's had some odd symptoms we thought were changes in the cerebral palsy since he's now an adult. Those symptoms are fatigue, intermittent numbness in places on his legs and feet, electrical sensations in his abdomen and other places, and increasing spasms (why we thought it related to the CP). Yesterday at the lunch table he suddenly told me he was feeling a squeezing sensation in his chest as if someone was hugging him tight. That lasted only a few seconds but soreness and tenderness in those areas continued today.

Does this sound like MS? I'd welcome your opinions and also would like to know what kind of doctor we'd see first for this. My son already takes Baclofen for the CP and sees a neurologist who has completely blown off my son's account of these symptoms. Of course, the neurologist knows nothing of the "hug" that happened yesterday but that set off alarm bells in my head.

Thanks so much for your help - Barbara
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Old 02-10-2008, 09:17 PM   #2
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Re: new here

Due to your son's CP, you may want to approach the doctor as to whether it is CP related. Then, if it is not, the doctor can arrange a visit with a neuro. MS presents with varying symptoms. My brother-in-law has CP and he sometimes has pains that are CP related.

I would love to be able to tell you what is happening, but at this stage, I think you need to approach it with medical testing.

 
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Old 02-11-2008, 03:39 AM   #3
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Re: new here

I also deal with alot of people who have CP through my work. I have heard them describe what sounds like to me, the MS hug, only to later find out this IS INDEED a CP thing!

Its not unusual to experience what your son described. I would also suggest presenting this to his doctor and letting him take it from there. If you are TRULY interested in what type of doctor would handle MS; it would go to either a Neuorologist who has MS experience, or straight to an MS Specialist, who are highly trained Neuros with fellowships in MS....

You might also check healthboards CP sections looking for more people with CP or caregivers of people with CP, to see if this is something they can help you more with...
good luck.
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RRMS- dx 05

Last edited by MSNik; 02-11-2008 at 03:40 AM.

 
Old 02-11-2008, 06:07 AM   #4
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Re: new here

Thanks to you both! I do hope it's CP related just because my son has already had so much to deal with in life. I had a Lyme tick bite last summer, so also wonder if he's had a Lyme tick bite we don't know about.

Roseanne Roseannadanna's father was right, it IS always something! That's a Gilda Radner phrase for some of you sweet young things who might wonder about that sentence!

Fingers crossed - Barbara
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Old 02-11-2008, 01:23 PM   #5
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Re: new here

Loved Rosanna! Gilda was quite an inspiration, wasnt she?
I hope things work out for you. Do get your son tested for LYme...Lyme mimics MS in many ways...but find a Lyme Literate doctor- regular old blood tests do not always pick up Lyme...alot of false negatives are out there. Someone who specializes in Lyme disease will send his blood work to the right place and get the right answers...its worth a shot we are only talking about a blood test for starters!
Good luck and let us know how you make out.
Nikki
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RRMS- dx 05

 
Old 02-11-2008, 08:35 PM   #6
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Re: new here

Thanks Nikki -

I didn't find a Lyme literate MD, but did learn a lot from the Lyme site here and my GP was willing to send my blood test to IGENEX lab (cost a fortune) and use the Doxy protocol that lasts 6 weeks instead of the CDC 2 week course. I had only one + on band 21 myself, so hope for the best.

My GP is on maternity leave just now, so wonder if we risk anything about our son's health by waiting until she's back in the office in about 5 weeks ...?

Do you know if any other medical problem also has the "hug" as a symptom?

What a quandary!

Thanks - Barbara
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Old 02-12-2008, 04:15 AM   #7
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Re: new here

Barbara, Im glad you were able to find out about Igenex. That is the best lab in the country for dx Lyme...my blood work was sent there as well. I feel comfortable saying that my Lyme came back negative, and it IS negative. I trust them.
I dont think you are risking anything in a month. Does she have someone covering her whom you could see if there are any new developements? She must have someone taking emergencies...but overall, nothing seems to change that quickly with neurological diseases. I wouldnt make yourself sick worrying about what a 5 week period can do. Many people wait 3 months to seee a neuro or have tests done for MS.....
Should be ok. Have a good day, ok?
Nikki
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RRMS- dx 05

 
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