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Isaac's syndrome

Lynn2
14 Recommendations

Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease...
Thanks,
Lynn

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1167 replies

MissMollypolly

We are heading away for thanksgiving so


HAPPY THANKSGIVING FOLKS!!

Molly

boonie2

I would hope my experience would not deter others as I am sure it does help as why else would they use it. But for me they know I got too much but also think I might be allergic to it.
I would encourage others to do some research and make informed decisions.

rickthurbon

Boonie
Sorry to hear about your side effects from the IVIG.
Hope you are improving as the days go by.
Everything has side effects and its a shame this caused you the problems it did.
I hope your problems do not turn others away from trying this treatment as I know it has good results with other Autoimmune conditions.

Kind Regards
Rick
Sydney Australia

MissMollypolly

wow Boonie

My neuro wants to do that with me, but I read up on it and decided that I could end up worse than I started, so she and I do not see eye to eye.

She finished by telling me - come see me when you need me - I havent been back.

So sorry you went thru that. Its so important to weigh all the options before starting on anything -

Molly

rickthurbon

Leapgirl

Thanks thats it.
It was the first thing I read about I Isaacs when I got out of hospital.
Do you want to start a topic with it on the Isaacs chat centre. Makes for informative reading.

Thanks and Regards
Rick
Sydney Australia

boonie2

I have Isaac's Syndrome and just went through my first round of 5 days infusion of IVIG. It resulted in me in the hospital for 4 days with heart issues and hemocritical anemia that required 2 units of blood because my red blood cells were exploding.

TerriLF

Leapgirl,

I am so sorry to hear what you and your daughter are going through. I can personally relate to the stress of an undiagnosed illness. I'll be thinking of you both often.

RICK--is this the South African article you were looking for?
http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijn/vol1n2/issacs .xml

Terri
Detroit
USA

leapgirl068

Hello everyone.
My 12 year old daughter is being tested for Isaac's right now. I have read through many of your threads and can relate to so many of you. My daughter has been getting the muscle spasms non stop for a year now. In Sept. she started with pains all over her body. Many times there are more than one pain at a time. None of the doctors we've seen can pin point what's wrong. We are seeing a ped neuro, who thought it was a vitamin d diff. that was causing the pain. She had an EMG yesterday, but couldn't finish it because it was too painfil for her. I am taking her back to finish the test but with a sedetive. My friend who is a neuro, but doesn't work with kids, told me it sounded like neuromyotonia/isaac's. After doing a little research and reading your posts, I am pretty sure Lulu, my daughter, has it. Any insight you may have will be helpful. I am beside myself right now, watching her in so much pain and feeling helpless.
stacy

TerriLF

Thanks, Rick and Suzi. I do have an appointment with the Cleveland Clinic in January. The doctor specializes in peripheral nerve diseases and was trained at the Mayo Clinic. So, I may have a more accurate EMG done there.

boozysuzi100

thanks Rick-will do !

boozysuzi100

TERRI-rick is right-think the key to this is to get a neurologist who is experienced in this field.I do not have a neurologist as i discharged myself from his clinic as he appeared unconcerned and disinterested regarding my symptoms.I saw 2 neurologists at first who both 'patted' me on the head and told me i had a virus which would get better in time.It was only when i went to occupational health at work that i managed to access a good neurologist who although he confessed he didnt know what was wrong ,at least researched my symptoms and sent a sample of blood off for testing to Oxford which in the uk is renowned for its expertise in this field.Although i was told the door was always open there following my appt,for me this was not practical as it is a 6 hour drive and by then my illness was not as acute.I have only been posting on here for 2 weeks after accidentally stumbling on the site by accident but have found it invaluable.I only wish i had accessed it earlier as i would have felt better informed and certainly reassured.I have been numerous times already this year to my gp regarding my sweating and have drawn a blank everytime just to be told its my age etc.even my last neurologist disregarded it.Shortly after visiting this site ,it quickly became very apparent that this is a prominent feature in Issacs for many of us. Working in the medical profession myself i feel it is a pity that some medics(not all) do not attempt to familiarise themselves with certain conditions.I know as a nurse when patients have presented with rare diseases etc i have made it my business to find out more about that condition.On a positive note you appear well informed and i hope you will be more assertive than i was when seeking answers.I was convinced i was on 'my last legs',as i felt so ill and in retrospect wanted to believe there was nothing wrong.Also when the symptoms first hit you and you feel dreadful it renders you vulnerable and i almost gave up the fight to find some answers as i was so frustrated and worn out with it all.We all come from different parts of the world,all have different symptoms and tratments but think what we all have is an understanding especially of how difficult it is to get a firm diagnosis.That is the starting point to living with issacs and incooperating it into your life as best you can.Keep pushing and i wish you the best of luck!

rickthurbon

BooziSuzi100

Doctor David amongst others has discussed Globus Pharyngeus (problems with the throat and neck) in the subject
CFS Vs Isaac Syndrome on the Isaac Pro Boards its easy to find.

Rick
Sydney Australia

rickthurbon

TeriLF
I agree with BooziSusi
I am certain there are many misread EMG's when it come to a diagnosis. I don't believe it is the equipment. It comes down to the interpretation. Two were performed on me by different Neurologists - I was having bad fasciculations at the time. Answer from them was "No nothing wrong with you go home and chill out" !!! Third Doctor's EMG bulls eye - Isaac Syndrome.
The Antibody test - only about 40 percent prove positive.
I am Antibody Negative but still have been diagnosed with Isaacs.
Rick
Sydney Australia

boozysuzi100

doesnt mean you havent got issacs.i had numerous negative EMG s which was quite frustrating.However my antibody test was positive.When i went to see professor newsom-davies at oxford (uk) he picked up abmormalities with EMG but i would imagine equipment is more hi-tech there on account of it being a specialist unit.

TerriLF

Well, my second emg was completely normal today. Did convince my doc to draw blood for VGKC. We'll see what that brings.

Terri

boozysuzi100

can you all refresh me on 'the throat thing- as cannot face digging thro the threads.just that sometimes my throat and neck go tight (sometimes feels like ive cricked my neck) but it extends down my chest and back almost in a cramp like fashion.it sometimes scares me because it is so weird and uncomfortable-is this what you mean??

roybean88

Thanks Molly, Mine is worse when I lay down ,or get up to quick ( or when I move my head a certian way). However I will try to cut back on salt. I love salt so I know for a fact I comsume way to much of it...... At times my blood pressure is low (not that low) but lower than most people. Not enough to worry about most of time. What is strange is my heart beats on the higher range for relaxing than most people. Even with lower blood presure. Not really sure what is up with that. Had my heart checked out a few years back & they said everything looked good. I will take your advice with the low salt diet & see how it goes. Would rather not go see yet another doctor & get more test done... Thank you for you help!!

TerriLF

Boozysuzi,
Thanks for letting me know your Isaac's started in the toes. This will give me more ammunition to keep fighting for a diagnosis.

Clarke,
Here is a link to the ingredients in Exhilarin.
http://www.metagenics.com/products/a-z-products-list/Exhilarin
If the link doesn't work, it is mainly Holy Basil Leaf, Ashwagandha, amla fruit and bacopa leaf. Interestingly, it says it works on the NERVOUS SYSTEM.

I go for a second EMG today. Keep me in your thoughts and prayers.

Terri

clarkesharp

Hey there,

Boozysuzi,
I know what you mean about the feverish feelings when it gets hot. This used be a big problem for me, especially if I went to a restaurant, which are invariably hot inside, and was eating salty foods and wine. I believe that this is one of the areas where the medication has been most effective. I don't really get these hot feelings to the same extent. I suppose upping the dose might reduce it even further, and even cut out the sweating eventually. Gabapentin doesn't seem to make me forget like carbamazepine - not at 900mg/day anyway. My name is Martin btw, and I'm from Troon in Scotland - and I still have cigarettes from time to time too.

Terri,
I looked up Exhilarin, but couldn't find an ingredients list. The tea I used was Lipton Yellow Label, but again I don't know what specific tea's made up the blend. I'm convinced that this sort of thing causes immune overreaction in some people. I was run down at the time and also had sinus trouble at the time so it's probably a combination of factors or else more people would get isaacs than actually do through taking Exhilarin.
But you got it through ingesting the pill. The digestive tract is normally an effective screen for most harmful things in the body. My dog for instance, eats a lot of weird stuff and doesn't get ill. Probably just shows how damaging the specific causative substance was. I think they are flavanoids - could be wrong (we had a discussion about this in the other forum if you want to check it out).

rickthurbon

Magnolia653
I cut down on the Teretol to get an idea of how the Infusions of Rituxamab was helping I felt pretty good when I started to cut back however I needed to put the dose backup.

Rick
Sydney Australia.

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