weakness, pain, a lot of problems

[caseygabe]

Hi,
I am new to this site. I just wanted some opinions. I have a lot to say, so this could get lengthy.

In 2001, at the age of 21, I had had a severe concussion from jumping horses with quite a few broken bones as well. About 3 months later, I started having problems with weakness in the legs, eye problems, etc. I had tests for MS and all came up negative. One morning, about 3AM, I noticed I was having problems breathing and got to a hospital in time to be put on the ventilator and diagnosed with Guillain barre syndrome (GBS). I went 18 months with paralysis in the legs, but eventually got back the use of core, arms, and hands.

In 2003, I was dx with CIDP due to flare ups yearly, but that was an unsure diagnosis and still is. It depends on the dr. The MS tests (MRI - negative for lesions). Can't due a spinal tap due to every time I get a severe infection in the spine.

symptoms now:
burning
weakness in legs and arms,
hot/cold sensation loss
migraines
Pressure in the head that is unexplainable
peripheal vision loss
constant infections (UTI, Kidney, pneumonia, bronchitis)
lymph node swelling in the neck and armpits
have been told spleen is swollen
anemia
muscle spasms
drop foot
Lost all my hair on my head, eyebrows, eyelashes (although it is now coming in again)_
rash on feet and chest at times
nausea or vomitting
always feel full
irregular periods (went for 2 years w/o a period)
cervical pap smear not normal (have to watch for cervical cancer)
don't sleep well due to pain
epilepsy

Been tested for food allergies. Also, here is the weird part. I use to be able to take just about any medication, I can't hardly take anything now. In the last 3 years, I have developed anaphylactic shock allergies to:
Penicillin, valium, sulfa, ceclor, tetracyclane, doxycyclane, metroindazole, tylenol, ibuprofen, aspirin, demeral, darvocet, darvon, latex, bees


contracted muscles in hand
more left sided than right
I never feel good anymore
night sweats
weight loss, then gain
Trigeminal Neuralgia (diagnosed)
joint pain
leg swelling

Cat scan didn't show the swelling of the lymph nodes, although you can see them
Bone marrow biopsy came back normal, although chromosome study did NOT come back normal
MRI comes back normal
EMG (depends on the month, have had low average and also have bad emg's)
Mammography came back ok, although it did show swelling in the lymph nodes but Cat scan did not. Ultrasound showed swelling of lymph nodes
LDH level extremely elevated at TIMES
Anemic, been given blood transfusions for this
Blood work will come back normal some months, other months will come back with high WBC, low RBC, Low hemoglobins, low monocytes, lymphocytes

Family history:
Mother: breast cancer
Father: lymphoma, MS, heart probs, Blood pressure issues
Brother: CIDP
Sister: cervical cancer,

Here is the wierd part of all this. In my family, on my mothers side, there have been cousins with very similar symptoms as mine, but have passed away in there 30's. no diagnosis, no reason. I just lost a 1st cousin with this last year. No one knows what it is.


Please email me with response. I will be checking this periodically.

***@****

I am a 28 year old female. I am still very active as a paraequestrian rider and work out 4x per week. Although I know things are getting worse daily. I don't feel right anymore at all.

[caseygabe]

Yes. Most of these symptoms are happening now. I feel crazy some days. I am not sure where to go with all this, except I have had a horrible time finding a Dr. to take the case on and realize that this is no normal case and to look for something "not Normal."

Laurietta

[Redsnapper]

I am so sorry you are having to go through this.  I too am young, 22, and I have had awful symptoms for the past 4 years.  When I read your post it reminded me of something I had read about for myself.  Addison's diseas/adrenal insufficiency fit quite a few of your symptoms.  I have recently become allergic to everything it seems.  I can't even use bandaids anymore!  I have bene diagnosed with vertigo, livedo reticularis, raynaud's syndrome,irratible bowel and postural hypotension but no one can figure out what is causing it.  Plus, I have like 50 other symptoms that I don't have a "Verified" name for that still are driving me nuts!  If you find anythign out would you please post on here what it is?  I will do the same for you if you think it woud help.  My blood work is normal and then slightly abnormal randomly just as your is.  I am so frusterated and just down right sick I can barely stand it!  I hope you feel better soon!

Rian

[Dr. Kokil Mathur]

Hi
Thanks for such a detailed post. I am really sorry to learn about your condition. How are you now?
You have explained your symptoms well. It is definitely a progressive disease and you do have a strong family history. I have not examined you, so based only on your symptoms it’s possible that you have CIDP. I am giving you a link to the centers that can help you with your problem. http://www.ninds.nih.gov/disorders/cidp/cidp.htm
Please let me know if it is of any help.
Here is another link that gives all details of CIDP, including symptoms, diagnosis and treatment.
http://en.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy
It is a difficult situation and you need to rely on your doctors. I am not sure what treatment is being given but please go through the links for all the available treatment. The first link also gives centers where research is being carried out for better understanding and treatment of CIDP and GB Syndrome.
For food and drug allergy you will need to go through a lot of skin sensitivity and blood tests like the RAST Panel. For treatment of anaphylactic shocks many auto-injectors are available like: http://en.wikipedia.org/wiki/EpiPen
However please discuss this with your physician.

Meanwhile if you need more help, please feel free to contact. I’ll be happy to answer your queries. Please keep me posted.