Are there any good message boards/News groups for people with MS?

Question

I have many symptoms, (off and on) of MS. I'm having trouble with my GP at getting a diagnosis & any help for that matter. Can anyone point me to a good News group?

Answer 1

GREETINGS!!! I'll answer this question for the both of you!!!

First of all, here are my qualifications for providing you with this answer:

1) I've successfully managed the symptoms of MS for over 45 years.
2) I was an HR Executive for over 30+ years, and combined my professional and personal expertise in creating a website dedicated to assisting folks with "chronic disease symptoms" better document, communicate, corroborate, and manage their symptoms and the resulting impairments to become expert patients; chronic disease self-managers; and, partner with their doctors to practice patient-centered health care.

http://www.disabilitykey.com

My website contains tons of information in 2 blogs, downloadable free articles and self-help ebooklets, and the Disabilitykey Workbook which contains over 100 pages of how to processes and actual forms - blank and completed examples - to assist folks. This workbook is available for a very small price (under $10).

Now, because you are having trouble with your GP at getting a diagnosis and any help, here's a blog that I did that discusses not only the top 22 MS symptoms, but what - at least a year ago - were the top medications used to help you better manage those symptoms.

The reason that I like this list of symptoms and their associated "management aids" is that precisely because MS has so many symptoms, you may need to take some time to do some "introspection" to figure out which TYPE of symptom do you have!! For example: do you have "plain vanilla" depression, or do you have depression coupled with either pain or fatigue? The management aids for the 3 different "types" of depression are different; so, the more precise and specific you can become shen documenting both your symptoms and how they impair you so that you can better inform your doctor, the better your doctor can assist you with symptom management!!

So, your Doctor tells you that you have a disease. You know that you have symptoms that impair you in your every day life, but you want your Doctor to give you something to make the pain/symptom go away!

What is the best medication for your symptoms, for your illness? Remember, only your Doctor can help you. However, the better informed that you are about what is out there, the better you can discuss alternatives with your Doctor(s).

The following information comes from the National MS Society website. Now, most disease medication lists start with the brand name first, with the SYMPTOM that it is to address almost as an after thought. BUT, we, the patients, start with the symptom first, so that's how I have decided to sort the medications. Here goes. Products available without a prescription are so indicated (+).

Once again, this will provide you with information to discuss with your Doctor. By having options of medications for a symptom, you and your Doctor can discuss which treatment would be best for you, given your other symptoms, your specific condition, and any other factors that only your Doctor can know. And, if you do not know what the symptom means (I'm not sure that I know what "Paroxysmal itching" is) you can ask your Doctor, and learn something new!


Fatigue: Amantadine; Cylert; Provigil

Spasticity: Baclofen; Dantrium; Intrathecal Baclofen (ITB Therapy); Valium (muscle spasms); Zanaflex

Constipation: Mineral oil (+); Colace (Docusate (+)); Dulcolax (Bisacodyl (+)); Enemeez Mini Enema (Docusate stool softener laxative (+)); Fleet Enema (Sodium phosphate (+)); Metamucil (Psyllium hydrophilic mucilloid (+)); Phillips' Milk of Magnesia (Magnesium hydroxide (+)); Sani-Supp suppository (US) (Glycerin (+))

Erectile dysfunction: Papaverine; Cialis; Levitra; MUSE; Prostin VR; Viagra

Nausea; Vomiting; Dizziness: Antivert (US), Bonamine (Can)

Paroxysmal itching: Atarax

Disease-modifying agent: Avonex; Betaseron; Copaxone; Novantrone; Rebif;

Urinary tract infections: Bactrim; Septra; Cipro; Macrodantin

Urinary tract infections: (preventative) Hiprex, Mandelamine (US); Hip-rex, Mandelamine (Can)

Urinary tract infections (symptom relief): Pyridium

Urinary frequency: DDAVP Nasal Spray; DDAVP Tablets

Bladder dysfunction: Detrol (US); Ditropan; Ditropan XL; Oxytrol (Oxybutynin Transdermal System); Pro-Banthine; Sanctura; Vesicare (US)

Bladder dysfunction; Pain: Tofranil

Depression: Effexor; Paxil; Wellbutrin; Zoloft

Depression, Pain (neuropathic): Cymbalta

Depression; Fatigue: Prozac

Tremor: Laniazid; Nydrazid

Tremor; Pain; Spasticity: Klonopin (US), Rivotril (Can)

Acute exacerbations: Decadron; Deltasone; H.P. Acthar Gel; Solu-Medrol

Pain (dyesthesias): Dilantin; Neurontin

Pain (paresthesias): Elavil; Pamelor (US), Aventyl (Can)

Pain (trigeminal neuralgia): Tegretol

Now that you have read all 22 categories of Multiple Sclerosis symptoms that HAVE a medication that might mitigate it, and know of many others that have no associated medication, I'll bet that you are asking yourself how do I make the link between knowing that I have one or more of these, and explaining how this symptom impairs me? If you have these questions, please check out our website at http://www.disabilitykey.com.

Also, please feel free to email me by clicking on my Yahoo name. I'll send you some specific forms to document your symptoms to better communicate with your Doctor.


Finally, here are some suggestions:

1) Document your symptoms and their impairments. (My forms are being used worldwide.)

2) use any Internet search engine and plug in the words "MS symptoms". Then you can see if you have any or all of them.

3) Then, go to see your doctor, better prepared to partner with him/her in getting you a diagnosis not only for your "condition", but for medications and/or other suggestions for "managing" your symptoms.

4) A FANTASTIC "virtual village" for folks with all types of autoimmune diseases - including, but not specific to MS - is the following:

http://www.butyoudontlooksick.com

While started by someone with Lupus, this website contains tons of supportive forums, including an MS-specific one, Moderated by me!! I also Moderate the Social Security, Work Related, and Baby Boomer forums.

Finally, please feel free to contact me by clicking onto my Yahoo name and email me or im me with additional questions along your process of discovery.

Best wishes.

Answer 2

mswatch.com is great- you register but its free.
It hard to get a dx, as docotrs may know its some type of neru problem but cant name it yet
You need to go to a center or doctor that specializes in ms

any question fee free to ask

Answer 3

Oh my gosh... the post above this is awesome!! I'm am checking it out as soon as I leave this site.... thank you thank you, thank you
I'm also going to print is for my sister !!

Answer 4

you tell me i want to know too