ALS diagnosed !!

[Gingergrrl]

Thanks for your reply, i am always happy when anyone with useful information replies to one of my posts, even if i quoted someone else when asking something

Thank you and that made my day but am afraid if I keep relying, I will take this off track from Omar's original post which is too important. Am happy to chat further via PM. Am at IVIG the next three days in case I do not reply until next week.

 

[patient.journey]

thanks for all they good replays ,, am in the ER for kidney pain and some up normal function test and they asked a neurology doctor to come and see me on my demand to discuss my symptoms without mentioning my last diagnose maybe he would say something else hopefully ..

am taking another opinion for my neurology symptoms and seeing what is causing my kidney problems today also !!

thank you guys again

 

[leela]

Not that diagnosing or treating Chronic Lyme Disease is easy, but that disease complex often presents as Dxs such as ALS, Parkinson's, etc.
Lyme (Borrellia and co infections) is known as "the great imitator" because it presents many symptoms associated with other diseases--
and it typically affects kidney/bladder, heart, and CNS. Contrary to popular belief, most people never get the bullseye rash.

Here's a place to start, if you are drawn:
https://www.lymedisease.org

Best of luck in finding the best answers and treatments for you!

 

[TrixieStix]

@MeSci
Unfortunately the slow progressing form of ALS like Stephen Hawking has is rare and is only found in like 2% of those with the disease. Having lost 2 friends to ALS in the past couple years I understand the gravity of such a diagnosis and hope that the doctor is wrong and that it is indeed something else.

 

[Daisymay]

Thank you and that made my day but am afraid if I keep relying, I will take this off track from Omar's original post which is too important. Am happy to chat further via PM. Am at IVIG the next three days in case I do not reply until next week.

Good luck GG, I really hope it helps x

 

[btdt]

Hi Alvin, I know you are asking @Silence (not me ) so I will keep this brief but feel compelled to reply b/c I think your question is so important. I was given a CFS diagnosis by a GP in early 2013 and basically fired by her and told there was no treatment. I accepted this diagnosis as fact as I continued to get worse until I could not stand/walk at all without a wheelchair 24/7. I saw doctors but if they had a specific theory of CFS, they just plugged me into their theory whether they had examined me or reviewed my test results, etc.

I began working with an ME/CFS specialist in mid 2014 (who initially accepted my CFS diagnosis b/c I do meet many of the criteria). But as time passed, he studied and reviewed my case in it's entirety and now feels that I do not have CFS, that my symptoms are different from most of his CFS patients, and that we needed to keep digging deeper even though it was unclear what my true diagnosis is called. I have POTS & MCAS but something else was going on, too.

Long story short, after a neuro found I had a weird calcium autoantibody (but then totally dismissed me), my main doctor took this very seriously and understood that this autoantibody required cancer checks and that I probably had lots of other autoantibodies, too, and he was correct. He felt high dose IVIG was my best chance at improvement and he was 100% correct and this led to Rituximab (in 2 wks, hasn't happened yet).

So, the point of my story (damn, it got long after all) is to not accept anything as fact until you have the evidence and for Omar and Silence, to see specialists in ALS/MND vs. a random doc who is just guessing. The docs who will say, "I don't know what's going on but let's keep looking" are the heroes in my book vs. the ones who have a single theory that they plug all patients into.

Am still praying for you @Omar (and now @Silence, too) that an explanation will be found that it is not ALS. It may not apply but many autoantibodies cause muscle weakness and are worth checking into (in addition to the EMG and nerve conduction tests with a good neuromuscular doc, although I know a good Neuro is sadly very hard to find).

"weird calcium autoantibody"

Could you please tell me the name of the test that found this calcium autoantibody?

 

[Gingergrrl]

"weird calcium autoantibody" Could you please tell me the name of the test that found this calcium autoantibody?

The one that I have is called the "N-type calcium channel autoantibody" but there are a few other types like the P/Q type which I do not have. The test that first discovered it was called the "PAVAL" panel from the Mayo Clinic. A doctor ran some blood tests and sent them to Mayo but I have never been to Mayo (just my blood ). Hope this helps.

 

[kangaSue]

"weird calcium autoantibody"

Could you please tell me the name of the test that found this calcium autoantibody?

Not sure if it's the case in Canada but here (Australia), the test for calcium channel antibody alone is called "voltage gated calcium channel (VGCC) antibody". Not sure if it needs to be specified as N-type, P/Q-type, L-type or whatever although my doctor did specify N-type on the request form.

I have seen these antibodies referred to as "voltage dependant calcium channel (VDCC) antibody" in some references too.

Mayo does a number of different autoimmune antibody panels that include VGCC Ab tests.
http://www.mayomedicallaboratories.com/it-mmfiles/neurology-request-form.pdf

 

[taniaaust1]

after been in the ER more than 10 time in one month with muscle spasm , tongue twitching , heart palpitations , high blood pressure and more wired symptoms a new diagnose is added to mine ? ALS !!

Hi Omar, Ive had all those symptoms with my ME at various points except the tongue twitching one. From your post it sounds like your doctor is still trying to guess what u have. I suggest to go and see someone who actually specializes in ALS to ask what he thinks, try not to allow guessing drs to concern u esp when ME imitates so many other illnesses at times with their symptoms. (my sister with her ME/CFS she often gets swallowing issues).

Ive heard of many people who have ME/CFS being diagnosed with other serious stuff but later having their diagnoses pulled from them when drs reaslise it wasnt that after all and regiven them back the ME/CFS diagnoses

If u fit the canadian diagnostic ME/CFS criteria well, it could well all be your ME/CFS and associated issues. Note B deficiency can cause tongue twitching. So it could be a good idea to get yourself a good multi B supplement to see if there is any improvement

 

[patient.journey]

thank you all my dear friends

what caused my CFS or CFS like illness is one nasty infection that i dont wish any one of you do have , its mostly still in my body and it played my body in really bad weird way all those years


am having my third course of antibiotics this month skin infection , sinus infection and now for kidney infection with 3 negative cultures but with high pain , blood in urine that doctor even didnt know what to prescribe ( no fever once )

i had another diagnose for ALS while i was in the ER but deep inside me i dont believe so

i will leave the ALS for now and i will try treating my kidneys and stand again

regards

 

[btdt]

high pain , blood in urine

I never have fever been sick many times rarely fever.. how are they diagnosing these infections if the cultures are normal?
Have they done a PCR?
How do they know what antibiotic to give you if they don't know what bacteria you have?

 

[patient.journey]

high pain , blood in urine

I never have fever been sick many times rarely fever.. how are they diagnosing these infections if the cultures are normal?
Have they done a PCR?
How do they know what antibiotic to give you if they don't know what bacteria you have?

i dont get fever ever like my body is not fighting , i have frequent urination , both kidney tingling and pain , back pain, thirst , testicles are non comfort , nausea , legs pain + my original body symptoms

3 urine cultures are negative , 5 urine analysis included bacterial microscope searching and nothing was found but he put me on keflex and today is my forth day and it doesn't seem to help , its making my body act weird after all those courses of antibiotics and if nothing changed by tomorrow am stopping them

regards

 

[btdt]

It would seem they are not looking in the right places I sure don't know the answer wish I did.
I hope doctors can sort it out soon...wishing you the best.

 

[Maya24]

@Omar88 Hope your pain will ease soon. Sending you vibrations of peace, joy and a good night's rest.

 

[kangaSue]

i dont get fever ever like my body is not fighting , i have frequent urination , both kidney tingling and pain , back pain, thirst , testicles are non comfort , nausea , legs pain + my original body symptoms

but with high pain , blood in urine

I don't know that it can cause all your symptoms but, more so if the testicular discomfort is more pronounced on the left side, look into getting a Doppler ultrasound for left renal vein compression (Nutcracker Syndrome) which could fit for all the symptoms in the above two quotes.It can cause POTS too and if you're really unlucky, GI dysmotility from having SMA Syndrome at the same time.

 

[Gingergrrl]

@Omar88 Hope your pain will ease soon. Sending you vibrations of peace, joy and a good night's rest.

I am also continuing to send good thoughts your way @Omar88 that you will have relief of your symptoms and the true cause will be found (and it will not be ALS).

 

[TrixieStix]

w

thank you all my dear friends

what caused my CFS or CFS like illness is one nasty infection that i dont wish any one of you do have , its mostly still in my body and it played my body in really bad weird way all those years


am having my third course of antibiotics this month skin infection , sinus infection and now for kidney infection with 3 negative cultures but with high pain , blood in urine that doctor even didnt know what to prescribe ( no fever once )

i had another diagnose for ALS while i was in the ER but deep inside me i dont believe so

i will leave the ALS for now and i will try treating my kidneys and stand again

regards

what do you mean by "leave the ALS for now"?

 

[bombsh3ll]

I do hope you get some relief soon Omar and am glad there are still other avenues being pursued. Keep us updated. Best wishes

 

[Dechi]

@Omar88 I think your plan to treat your kidneys and forget about ALS for now is the best.

There might be something else that explains your test results. Sending good vibes and hoping that you get up on your feet and well very soon !

 

[Skycloud]

I'm sorry you're going through this. Sending you some encouragement, Omar, hope you find answers and good treatments soon